Stories

Please leave a comment below and share your DCIS story/journey. We can learn so much from one another! Family members and loved ones are welcome to share their perspective as well. Thank you!!

109 Responses to Stories

  1. Marimar says:
    August 17, 2012 at 7:03 am

    Hello everybody,

    I found out I had DCIS last April. Unfortunately since mine is high grade and because of the size of one of the areas I have been told I need a mastectomy. I have shed a lot of tears and have felt very alone. I am working on changing my diet and having less stress in my life. I want to have a mammogram to see what is happening now. I want to see if anybody knows anybody who has high grade DCIS and/or is watching and waiting as opposed to surgery. Thank you and white light/good luck to you all.

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  2. dp4peace says:
    August 17, 2012 at 3:04 pm

    Hi Marimar,
    Have you tried posting your question on breastcancer.org? There may not be a lot of support there for watching and waiting with high grade DCIS — especially in the DCIS section, but you may try the alternative forum/threads. Great that you are working on healthy eating and stress reduction. You may also want to visit Dr. Silverstein for a 2nd surgical opinion as well as Dr. Lagios for a 2nd patholigical opinion. Their info is in the “Resources” section (glad you found it!). Keep on the path of health and peace and be sure to keep in touch!

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  3. Marimar says:
    August 17, 2012 at 5:03 pm

    Hi dp4peace,

    I will try posting my question on breastcancer.org. That’s a good idea. I think I may have posted something on another site but not there. I will also see about contacting Dr. Silverstein and Dr. Lagios. I will keep you all posted. This is a great site, I’m so grateful for it, thank you! Health and white light to everybody!

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  4. Joan Merwyn says:
    January 27, 2013 at 9:19 am

    Dear Donna and all of you out there on the healthy path
    ,
    Thanks so much for your website! It confirms all my suspicions and instincts! I am still exploring it, but am reaching out to you personally, as I have surgery for a lumpectomy scheduled on Feb. 20th, 2013 and need to figure out if I even need it. I have no intention of doing any further treatment- unless they find something invasive.

    I, like so many others on your site, am being strong-armed by the medical profession to do lumpectomy, aggressive radiation for 5-6 weeks (5 days a week) AND 5 years of tamoxifen for a diagnosis of:

    Post Biopsy Diagnosis (10-gauge needle core):

    – One, .6 to .8 centimeter sized DCIS in left breast. Less than 1 Centimeter!
    – Intermediate grade, cribiform type with calcifications and prominent mucin production
    – Atypical ductal hyperplasia
    – Microcalcifications within DCIS, stroma, and benign ductal elements
    – Step sections were evaluated

    Positive receptor studies for ER and PR

    “The stains do not provide any convincing evidence of an invasive component in this biopsy.”

    I am a youthful, energetic and healthy, 61 year-old, who has been on an organic vegetarian diet most of my life. I also smoked for most of my life, and quit 2 yrs. ago, by using electronic cigarettes, which deliver nicotine without any of the thousands of burning carcinogens. I did get a diagnosis of emphysema a few years ago, but have no effects, except an occasional wheeze. Am an active, a movement artist and educator. I live in both Rhode Island and New York City (Brooklyn), where I work.

    I have not been getting mammograms for the past 7 years. Had a thermography a few years back. No history of breast cancer or uterine cancer in my family, although lots of other kinds of cancer on my Mother’s side.

    I am a survivor of a potentially deadly melanoma in the back of my eye (choroidal), which was successfully treated in 2002 with 5 zaps of pinpointed proton beam radiation at Mass. Eye and Ear and is in complete remission with a 1% chance of recurrence. (the hospitals in NYC wanted to either take my eye out or radiate my brain, but that’s another horror story..).

    My path report on the (right) breast biopsy eventually came as a result of the hospital in RI (where I had a mammogram in Oc, 2012) calling me repeatedly to look at a past mammogram, which I was unable to locate in NY. Since they were unable to locate a comparison mammo, eventually, they pressured me into getting a second mammogram- which i had on Jan. 11. 2013. Please note that they called me repeatedly, but refused to tell me WHY they wanted this comparison. turned out to be- you know- the usual: a tiny micro calcification cluster.

    During the second mammo in Jan. of 2013, they (the radiologist) insisted that I also have an ultra sound. he then told me that I needed a biopsy, due to the cluster, which could indicate – (you got it) the C-word. All my red flags went up (scare, scare, scare the patient into filling their coffers with cash, etc).

    Turns out, the hospital has a new, 5-year old Breast Care Wing and are trying to keep it going, I guess…D

    Impression from mammo and ultrasound 1/04/13:
    “Suspicious microcalcifications with a corresponding much smaller area of shadowing seen sonographically. Steriotactic core biopsy of microcalcifications is recommended.”

    So, they are evidently “concerned” about the possibility of the mucus being “muscinous cancer” which they tell me IS an invasive kind. They sent the stains to a lab in California: Clarient Diagnostic Services and evaluated them in RI hospital.

    The following comment was on the hospital path report:

    “There are areas of prominent mucin extravation that are focally associated with detached, neoplasticductal cell clusters.This could represent disrupted DCIS glands, but the findings are concidered suspicious for an invasive mucinous carcinoma. Special stains have been ordered in efforts to better characterize that process, but ultimately, the overall process will likely best be evaluated on the exisional specimen. ER and PR studies have also been ordered and will be reported in an addendum.”

    The hospital is insisting that this is the complete path report and refuses to admit or show me any path results of the mucinus samples that were sent out! HUH?

    Furthermore, they want to take out my sentinel lymph node, just in case….
    AND I think they may have gotten all the DCIS out in the biopsy, at least the calcification cluster was gone in the after-biopsy mammo (I saw before and after mammo)

    So, before they chop me up and poison me (that (rad/tamox part I won’t do- unless it’s invasive- i might consider..). my questions to myself and anyone on this path who want to reflect on this with me are:

    Do I need a lumpectomy yet?
    If so, should I let them remove and test the lymph node?
    Should I “wait and watch”?
    Or, get a mastectomy (not leaning toward that one- but do NOT want rad or tamox)

    I scheduled the surgery for Feb. 20th, when I have a week off. How long is the recovery and do I REALLY need this???

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    • dp4peace says:
      April 2, 2013 at 10:42 pm

      Hi Joan,
      I’m so sorry for not replying here sooner. I feel like I did reply but do not see anything. I am wondering how you are doing and if you had the surgery on Feb 20th and what the result was? I would for sure recommend a 2nd opinion from Dr. Lagios….Please update me so I can better respond. Hope you are doing well and my apologies again. ~ Donna

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      • Joan Merwyn says:
        April 14, 2013 at 10:07 am

        Hi Donna,
        Thanks so much for your response
        I did have surgery on Feb. 20th. They did get clean margins. Of course they want me to do tamoxifen but I am not going to. It was entirely in situ.
        I am on the east coast. Do I need to go to California to get a second opinion from Dr. Lagos? That would be difficult.
        I may go to Dana Farber to get second opinion from Dr. Ann Partridge, the oncologist you have quoted on your “Hysteria” page. I contacted her pre-surgery and she said there was no point in my seeing her until after surgery, as “DCIS is primarily a surgical disease”. In an email, she said she would be: “….happy to see you (me) after surgery to weigh in on value of further therapy including tamoxifen, which is NOT a no- brainier for the treatment of women with DCIS.”
        Any thoughts or suggestions would be appreciated.
        Thanks,
        Joan

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      • dp4peace says:
        April 14, 2013 at 12:29 pm

        Hi Joan,
        You do not need to go to Dr. Lagios in person for 2nd opinion. I believe if you fill out forms on his site, Dr. Lagios takes care of ordering your pathology slides from the hospital where your surgery was at. His service is well worth the money for peace of mind that it is actually a correect diagnosis. Up to 25% of times it is not! Quoted from Dr. Lagios’ website: “Unfortunately, inadvertent errors in interpretation, either for the actual diagnosis of carcinoma, or in evaluating size, stage and margins, are commonplace. The National Cancer Institute (NCI) and the American Cancer Society (ACS) strongly recommend a pathology review of the slides, particularly for duct carcinoma in situ and other non-invasive lesions, for which the error rate on review may be as high as 25%. A second opinion may make the difference between a benign hyperplasia vs. an in situ carcinoma, the need for re-excision, radiation therapy and/or chemotherapy. Second opinions can also help by confirming a diagnosis and providing reassurance that the patient is making a reasonable choice.

        For a pathology second opinion to be of maximal value, it must be based on direct re-examination of the pathology slides used for the original diagnosis. In the course of making a therapeutic decision for their breast cancer far too many women receive second opinions merely based on review of the written reports. With many new breast cancers of minute size or entirely non-invasive, the issue of a direct review of the diagnostic materials becomes even more critical.”

        Dr. Partridge would be another one I would include on my team if I were on the East Coast. But, getting the 2nd pathological opinion from someone like Dr. Lagios is truly critical in my opinion.

        Great they got clean margins!! Curious what your pathology report says. Grade, size and margins. Also what is your age? Glad they did not do sentinel node biopsy!! 🙂 Donna

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      • Joan Merwyn says:
        April 14, 2013 at 10:10 am

        PS – they decided not to take out the sentinel node, didn’t think it was necessary 🙂

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      • Joan Merwyn says:
        April 29, 2013 at 4:27 pm

        Hi Donna,
        Thanks for the info on sending my path specimens to Dr. Lagios, I will look into this and get back to you on the results.

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  5. tcs says:
    February 14, 2013 at 8:51 am

    hi sisters/perhaps brothers….i thought i posted my story yesterday but i do not see it but there could be a duplicate in another category. So my story goes in condescended version…2005 discovered calcs in mammo which after waiting 1.5 years biopsy then lumpectomy with no radiation or tamoxifin based on dr. lagios index. (during 1.5 years did acupuncture, raw food diet, juicing, etc but got scared to go all alternative) then mri’s and very few mammos every year since until recently with more diagnostic mammos more calcs (doctor just said mri’s do not detect calcs) so much for years of feeling clear! so just had surgical biopsy stereotactic failed do to calcs to close to skin but actually i think i scared the doc since i do not like too many mammos…had about 25 recently with all the procedures.

    just got a call yesterday dcis stage 2-3 two sites and doc said mastectomy or we can try a few surgeries but might be in lymph…ummm scary and really i cannot believe it. so will go back to lagios although his index will probably indicate something since i am medium to high but haven’t seen full report. will meet with surgeon but she doesn’t seem to have another opinion then the formula however love laura esserman whose name i got from this site…thank you! i need an appointment with her pronto. i told doc that there is 99% chance i will not be getting a masectomy, actually i said 100%…i do not know at this point if that is true but that is how i am feeling.

    open to all responses but for the people who truly believe in their heart mammo is the only way no need to respond…i have enough of these voices in my head….looking for other voices that match my feeling and belief system…thank you.

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    • Donna Pinto says:
      February 15, 2013 at 10:32 pm

      Hi tcs,
      I can fully relate and empathize with your dilemma. I was told mastectomy or 6 weeks radiation. I didn’t believe that was the right thing and I never stopped looking for better, saner answers. And it is on-going 3 years later! Good that you will get a 2nd opinion again from Dr. Lagios. That is #1. He changed my intermediate grade DCIS diagnosis to low grade. I also got a “LOW RISK” score from the Oncotyp test. And a clear MRI. But the Drs and even Dr. Lagios were still recommending mastectomy or 6 weeks radiation. My VNPI score was an 8. Yet, it still made no sense to me.

      Why would a DR. say it might be in the lymph??? My surgeon also tried to scare me with the “what if it’s in the lymph nodes.” I too had calcs in a secondary spot which showed on my last mammogram (Sept. 2011) and was not removed from last surgery because it was 4cm away. I was told mastectomy was a good option. I am no longer doing mammograms — which I wrote a blog post about. https://dcis411.com/2012/02/01/my-choice-for-no-radiation-no-more-mammograms/. From my research, I believe the AURORA RODEO MRI is a much better way to monitor my situation. No, MRI will not show calcs, but it will pick up high grade DCIS and invasive cancer better than mammograms.

      Dr. Esserman is great for peace of mind, especially if it’s not high grade DCIS. Determine that first with Dr. Lagios. I am also ER/PR positive. Due to this, you’ll be encouraged by Dr. Esserman and others to take tamoxifen for 5 years. Here’s a good “alternative” article to read about that: http://www.all-natural.com/tamox.html

      Please know you have options. Dr. Silverstein and other oncoplastic surgeons can do lumpectomies with reconstruction. Mastectomy is not the only option! I have written about all this on this site. I can also relate with your statement, “I got scared to go all alternative.” I was in the same boat. Despite my highly alternative healing guru reassuring me that I had nothing to fear, I felt I still needed to do mammograms 8 months after my first lumpectomy left 2 positive margins — which led me to two more surgeries a year and a half later. The fear of the “what if….” that is presented to us can be paralyzing. That fear needs to be addressed. Really go into it. What is this fear about? Once I truly got out of that fear, I began to feel empowered by my decisions. I found new Drs that were more in alignment with my decisions. I trust that everything is presented to us for a reason. I believe things don’t happen to us, they happen for us. All will be okay. Once you have all the info, you will make the best decision for you. You will know. You will be guided. Trust. You found this site. Take the info and take the time necessary to listen to what you need to do. The answers will come.

      Please stay in touch and feel free to ask anything else. I hope this has been helpful in some way. Sending you much love and light. ~ Donna

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      • Marimar says:
        February 16, 2013 at 7:49 pm

        Hi wonderful and courageous women of DCIS 411,

        I haven’t looked at this page in a while but lately I have felt in need of support again. Basically I came to a point where I got some great information (a lot from this page, I’m so grateful for it!) but am having to go it alone because of financial issues. I would like to have a thermogram/blood tests etc to see what is going on with my DCIS or go see Dr. Lagios for a third opinion (already have had two opinions, well three, one from a surgeon, one from UCSF and one from a naturopath) but right now I don’t have health insurance or the money to afford those things (thermogram, see another doctor like Dr. Lagios, etc.). I did have some blood tests done maybe three months ago (just a regular panel) when I still had health insurance but I was afraid to tell the doctor where I went why I had the blood tests done (afraid she would push/recommend traditional treatment, i.e. mastectomy, etc.).

        I’m not even sure what blood tests I have to have done to see what my DCIS is doing? In April it will be a year since I was diagnosed.

        Does anybody know what blood tests you have done for DCIS? Even if I did know I’m not sure how I would afford them? Are they expensive? Does anybody know if there is financial help for alternative methods?

        I don’t mean to be a downer here but this is my situation.

        For several months now I’ve been busy trying to find work so I can pay off my medical bills from the past (I’m still paying for the biopsy I had back last April) and other bills. So all I can do for my DCIS now is pray a lot, exercise, read a lot and try and change my lifestyle/eating habits/vitamins, etc. as much as I can. I have read tons of books and articles..and do as much as I realistically can with my life situation right now.

        Sometimes I get nervous because I don’t know what is going on inside. I know I feel pretty well and energetic and I have been changing my lifestyle since I found out about this.

        I just need support and especially from other women in my situation and find out what other women in my situation (financial hardships) do…

        Thank you all of you and God bless,
        Marimar

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      • dp4peace says:
        February 16, 2013 at 8:18 pm

        Hi Marimar,

        I can really empathize. One of the most stressful parts of this diagnosis is the financial burden — with the multitude of Dr. visits, opinions, testing, etc. All the holistic/naturopathic/alternative stuff (plus supplements and organic food) is not covered by insurance anyway. I have felt so much better since I have eliminated going to mainstream Drs. I do have health insurance so that certainly helps with costs of annual MRI and lab tests — but that is all I am doing now. Blood tests can not show anything about DCIS. Maybe if it is invasive, I don’t know? Thermograms did not pick up my DCIS 2x so I wouldn’t rely on that. I am not doing them anymore. My recommendation would be to reach out to family and friends. Share your story and ask for financial help. I did a “Hike to Half Dome” and raised over $700 which I paid to my amazing healing guru nutritionist friend — who never asked for a penny. https://dcis411.com/2011/12/12/half-dome-hike-2010/

        It’s time to get creative. Ask for help. Make up your own 3 day! If you need support, I am here!

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  6. tcs says:
    February 14, 2013 at 8:59 am

    oops one more thing that i recently found out which i have no idea what it means…i am estrogen positive receptor and progesterone.

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  7. tcs says:
    February 17, 2013 at 8:25 am

    hi marimar-

    i am not sure how old you are but there is a program in cal called bcctp…breast cervical cancer treatment program for woman from 40-? that cannot get insurance coverage. of course this is only for western stuff but perhaps it will give you some peace of mind. (hopefully i am understanding you correctly). also i would ask lagios for sliding scale and everyone else you come in contact. also i liked what donna said.

    best of heath to you.

    tcs

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  8. tcs says:
    February 17, 2013 at 8:32 am

    thank you donna for my reply…i would love to know where i can get an aurora imaging in bay area for future screening and can i ask my breast surgeon for an oncotype dx or do only some doctors do it…and what is quercetin and where do i get it and apricot seeds?. on another note, a friend keeps recommending cannabis oil…who knows but it seems to cure alot of other stuff.

    at this point i am on a full pause from my breast surgeon…i just looked at my incision from my biopsy…whoa about 5 inches geez…any good creams to minimize scarring;-) i ask this half jokingly but also honestly…this is obviously nothing compared to a mastectomy.

    that is all for now…after reading the article on tamoxfin…ummm…i do not think so. interesting that dr. esserman would be so in favor…she seems intuitively pretty reasonable.

    thank you for this fight…i feel so much more supported already…obviously my friends and family are scared and confused…i am not at this moment.

    warmly,

    tcs

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    • Marimar says:
      February 17, 2013 at 8:56 am

      Hi Donna,

      Wow, your Half Dome Hike was awesome, that’s so cool that you did that! I was just checking out the link you sent me. 😀

      I really appreciate your comments and sharing your experience with me. It gives me some idea of where I can go on this journey. I feel less alone when I read about other women who have been through this too and they have coped/survived/thrived!

      Thank you for all your ideas and support! Take care and white light!
      Mary

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  9. tcs says:
    February 20, 2013 at 6:53 pm

    donna…can you or anyone answer my questions in the post above feb 17…8:32 a.m.? thank you.

    on another note…i met with my breast surgeon yesterday and she showed me pictures of people who did not do anything with their dcis…oh my goodness! one breast looked like a brain, another had an orange coming out of her breast…colors pink, blue, etc. scared me to death…still have image. she knows i will not to masectomy and she said only one time radiation so she said why don’t we take another mammo and use as a base line for every 6 mo. mammos. (i am not sure why we cannot use the one b4 surgery…maybe she feels biopsy removed some cells…who knows. (i am hoping to do aurora mri to measure but there is none in sf).

    anyone who can help ease my mind would be great.

    thank you.

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  10. Donna Pinto says:
    February 21, 2013 at 4:45 pm

    Hi tcs,

    To answer some of your previous questions….

    Your surgeon or med. oncologist should be able to order the Oncotype test (if you fit the criteria).

    I order many of my supplements (including quercetin) from Vitacost.com. I don’t know anything about apricot seeds or cannibis oil but I have heard from others that they use this.

    Not sure if there is a closer Aurora imagaing center to SF but you could call them. I have the Aurora link posted under resources.

    I highly recommend using castor oil packs (you can google or youtube it) as well as traumeel for healing of the area where you had surgery. Vit. E oil may be good for the actual scar, but I didn’t put anything directly on my scar (which was/is fairly small).

    I have never heard of photos of dcis left untreated and I haven’t seen any in 3 years of research! It would be great if you or your dr. could post these for others to see. I would love to get the pathological opinion of an expert like Dr. Lagios about those photos. Did your doctor say if it was high grade DCIS or if there was a microinvasion or if the DCIS had turned invasive and the photos were of invasive cancer? Too many unknown factors. DCIS is heterogenious in nature. I’d love to ask Dr. Esserman if she has similar photos of dcis left untreated. Great scare tactic. If I were you, I would consult with other doctors such as the ones I have on my resources link. I too was told I needed a baseline mammo after 2 surgeries Sept. and Oct 2011…but I haven’y done one since. My choice is to not do mammos at all. My choice for surveillance is an annual Aurora MRI. There are not a lot of surgeons/doctors who would agree to this for surveillance as they only know what they know. My surgeon in SD told me I would maybe get an MRI covered by insurance 1 time. Well, I just had my 2nd annual MRI and it was covered by my ins.

    Hope this was helpful. Most important thing is to get the 2nd pathological opinion from Dr. Lagios and find a doctor who is more in alignment with your views/choices. Glad you are not worried.

    Keep investigating and keep me posted.
    Donna

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  11. tcs says:
    February 21, 2013 at 8:40 pm

    thank you so much donna….i ordered my 2nd opinion and called aurora today….i will look at everything you write and follow up tomorrow. i do not think my breast surgeon would give me the photos but i can ask…it seems like her partner is also a breast surgeon or pathologist.

    thank you again….i wrote in a haste before so sorry it was a little more curt then i would have liked.

    tcs

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  12. tcs says:
    February 26, 2013 at 8:22 am

    well dr. lagios results are in…an index of 10 with intermediate grade…summary recommendation masectomy since 50% re-currence in 8 years even with radiation. (i am paraphrasing).

    donna…i know you had an 8 right and you are steady in your course of no radiation, no mammos, and no masectomy?

    thank you…feel pretty good despite it all.

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  13. dp4peace says:
    February 26, 2013 at 9:27 am

    HI TCS,
    Glad you are feeling good despite the “10.” Yes, I was an “8” according to Dr. Lagios and his recommendation was re-excision for better margins plus radiation (to reduce recurrence risk to 15% from 30% at 12 years) or mastectomy. One month after my two surgeries and Dr. Lagios’ evaluation, I saw Dr. Silverstein (oncoplastic surgeon) who was sure he could do a “reduction lumpectomy” plus reconstruction — on both breasts. Good to know, but too drastic for me at the time. One month later I flew to visit Dr. Esserman at UCSF and she was pretty calm about my “risk.” She ordered the Oncotype test which showed that I was in fact “low risk” for invasive. By monitoring with RODEO MRI annually, I feel very good that anything serious (even high grade DCIS) will be picked up at an early stage and I can deal with what actually is there, rather than the fear of what may be. None of these Drs take into account the natural means of risk reduction…and I do believe we can do a lot naturally to reduce or prevent recurrence or invasive breast cancer. Nobody knows for sure and the medical Drs are recommending prevention measures that are extreme. We must question, investigate and individually weigh all the information before coming to a decision that we can feel good about and one that will allow us to live our lives and be able to sleep at night. I feel 100% sure I am doing what is right for ME. I am eternally grateful to the information and angels that appeared to help guide me and that which continue to guide me. I am a better, healthier, wiser, stronger, more connected person thanks to all of it. And….I am happy to keep paying it forward. through this site. We are a small growing sisterhood. No matter what our decisions! Keep feeling good! Much love and light to you TCS and to all who may read this, Donna

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  14. tcs says:
    February 26, 2013 at 6:49 pm

    donna…you are my first angel…i hope it is okay that i write again. i spoke to a woman today who had dcis one year mammo then father passed next year dcis invasion on mri and mammo so whe elected to do masectomy one breast, chemo, a genetech something called ?, and tamoxifen. she is also in the medical field…she strongly encouraged me to be aggressive. whoa. however she did say hers was HERC2 which is aggressive. it is tough to get an appointment with esserman…she is in high demand…i asked my breast surgeon to call her for me since she trained with her. and 2nd call to aurora and no call back but will keep trying to find this tool.

    little freaked again tonight…wow these beliefs are powerful by people who believe they need to treat aggressively. but in reading your message i will breathe deeply and trust my inner knowing and continue to sit with it all.

    (she told me juicing spikes insulin and superfoods do something else and recommended abrams integrative healing book).

    aaaaawwwwhhhhh.

    tcs

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  15. tks says:
    April 2, 2013 at 3:21 pm

    Hi Tcs,
    Diagnosed with DcIS October 2012…Two stereostatic biopsies at one facility. Has Er positive stage ) grade 3..Had second opinion in December. Had Lumpectomy surgery at UCSF January 17, 2013… Clear margins….Did the oncotype Dx test and my score came back 15% recurrence of DCIS or invasive cancer in ten years. Did not see Dr Lagios..No radiation recommended after surgery but Exemestane (Aromasin) pill for 5 years.

    Have a mammogram in six months….

    Freaking out from taking the pill. Researching to go alternative. Don’t know what to eat or how to start…Any recommendations …..Naturopathic Dr.s in san francisco…any clinical nutritionists….
    SOS……..

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  16. tks says:
    April 2, 2013 at 3:22 pm

    stage 0…..

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  17. tks says:
    April 2, 2013 at 3:45 pm

    trying to go all organic…have to detox, don’t know how…..started eating raw vegetables…beans…eliminating dairy products…..but what about eating out or go on vacation….very confusing….debilitating and mind boggling……

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  18. tcs says:
    April 17, 2013 at 9:43 am

    hi there…i just got back from a vacation so sorry for the delay. i am not familiar with the drug you are taking…i haven’t heard of it in my rounds. and when you say grade 3…is that intermediate dcis? anyway…just saw donna posted her diet. my dcis came back after no radiation (do not want to scare you). but green powders a must, ph over 7.5, try to juice or veggies…organic as much as you can, cancer loves sugar so try to cut down, but lagios says dcis is not about nutrition so who knows. i am not sure this is helpful…just being real.

    whatever you do work on your emotions and mind;-) best wishes to you.

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  19. tk says:
    April 18, 2013 at 4:26 pm

    Thanks a lot…

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  20. tcs says:
    April 29, 2013 at 12:53 pm

    hello…i have my last meeting with dr. ewing who works with dr. esserman at ucsf…esserman was too busy to meet. so i am going to hear about the tamoxifen study and then i am making my decision on my course of action. decision includes masectomy to be done with it all (obviously this choice does not feel aligned), wait and see (mammo and aurora imaging), or tamoxifen depending on my intermediate grade dcis.

    i continue to drink my green powder, juicing has fallen by the wayside right now, continue taking supplements, yoga when i can, hiking, walking, tennis….my jaw has been clenching not sure from stress or what. i feel pretty balanced about it all.

    advice/support welcome.

    tcs

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  21. dp4peace says:
    April 29, 2013 at 4:02 pm

    Hi tcs,

    Sounds like you are doing a lot to manage the stress, which is so vitally important when it comes to DCIS/cancer. As my guru Adriana always says, you can eat all the right stuff, but if you don’t take care of the stress, even the greens will turn acidic! Glad you are feeling balanced about it all. Keep on empowering yourself!

    I too got away from juicing for a while and started blending more. But now I got a brand new NutriPro juicer and I am gung ho again! Have you checked out the Gerson Therapy? I just met a woman who healed her thyroid tumor in 60 days. And spoke with a man who healed his bladder cancer. There are so many videos on youtube. Here is one: http://www.youtube.com/watch?v=U7Ck9D45OT4 . I would keep watching videos like this.

    Remember, UCSF may be biased towards tamoxifen (they are doing clinical trials), but Dr. Lagios is pretty bold in his belief that tamoxifen has little to no benefit. Here is some good info to read before making a decision: http://all-natural.com/tamox.html

    Keep me/us posted!
    Much love and light,
    Donna

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  22. tcs says:
    May 14, 2013 at 8:34 am

    hello…well just met with dr. ewing since couldn’t get appointment with esserman…i am meeting with oncologist to go over tamoxifen but will be prepared with reading up on it. unfortunately i did not learn one new thing with meeting with dr. ewing…it is so formulaic but still have hope that i will make the right decision for myself…all advice/support appreciated.

    warmly,

    tcs

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  24. Joan Merwyn says:
    May 15, 2013 at 3:19 pm

    From The New York Times re DCIS and mammograms:
    THE 6TH FLOOR BLOG:
    Behind the Cover Story: Peggy Orenstein on Rethinking Her Stance on Mammograms
    The author of this week’s cover article answers questions about a 1997 article on breast cancer that she regrets writing, and what she has learned since then.
    Here’s the link:

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  25. dp4peace says:
    May 15, 2013 at 4:02 pm

    Thanks tcs and Joan for the article posts. I have posted both stories on my facebook group with some interesting dicussions going on there: https://www.facebook.com/groups/373056561416/?fref=ts

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  26. tcs says:
    May 21, 2013 at 3:17 am

    met with dr. dolbomb…oncologist ucsf…his thoughts lumpectomy with radiation/tamoxifen or mastectomy…secondly tamoxifen. i am getting down to my decision and i am exhausted. he says if i do nothing there will most likely be big issues down the road.

    gosh…not sure what feels right at the moment.

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    • dp4peace says:
      May 21, 2013 at 8:39 am

      HI tcs,
      I was also told ” not to be stupid,” I was recommended by several different Drs to either do another surgery plus radiation and tamoxifen or mastectomy. Dr. Lagios said “not to do nothing.”

      Listening to the western medical doctors was for me the most stressful part. As I read more and watched videos and visited with holistic-oriented professionals, I became stronger and much more aligned with what was the right decision for me based on my individual DCIS criteria.

      I watched a couple of Dr. McDougall’s video yesterday.Here is one on BC treatment: http://www.youtube.com/watch?v=c_MNty1Gk3Q

      I like to focus on the positive statistics as Dr. McDougall says: 65-70% chance of no recurrence at 10 years. And, by monitoring with RODEO MRI annually, anything growing will be caught early. Deal with what IS, not WHAT IF….

      Here’s one on mammography:

      Wondering what grade Dr. Lagios confirmed your DCIS cells as? Also, did you have the oncotype test? Please recap. You are doing exactly as I did. No matter what you decide, at least you know you have done all the research and sought after the most sane solution. All is well — no matter what. DCIS is not life-threatening! Much love and light, Donna

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  27. tcs says:
    May 30, 2013 at 7:34 am

    i have not had the oncotype test…and dr lagios rated me a 10.

    and i am still trying to get someone to call me back rodeo mri.

    thank you.

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    • dp4peace says:
      May 30, 2013 at 8:06 am

      tcs,

      Keep trying with the Aurora Rodeo MRI or find another place. Ask your Doc to order the oncotype.test. It’s intermediate grade DCIS, right? Reread Dr. Esserman’s quotes daily:

      “Minimal-risk lesions should not be called cancer.”
      “With DCIS, the bulk of what we find is not high grade.”
      “Only high-grade DCIS is likely to progress to invasive breast cancer.”
      “If it doesn’t look like high-grade DCIS, we should leave it alone. We would eliminate two thirds of all biopsies if we did.”
      “Currently there are sufficient data to stop and rethink the entire approach to DCIS.”
      “Less than 5% of DCIS turns out to be something else, including invasive cancer.”
      “There are now 60,000 new cases a year of DCIS in the United States. But we haven’t seen any drop in invasive cancers, despite treatment of DCIS as if it were early cancer.”
      “The burgeoning problem of DCIS is a result of mammography screening. In the days before widespread mammography, DCIS was rare. In the United States, DCIS incidence has risen from 1.87 per 100,000 in 1973 to 1975 to 32.5 in 2004, according to a recent report published online January 13 in the Journal of the National Cancer Institute.”
      “Is the purpose of mammography screening to look for DCIS? No”
      “Maybe we shouldn’t try so hard to find it — particularly low- and intermediate-grade DCIS. We need to take them out of the screening agenda.
      Excerpted from: Take Carcinoma Out of DCIS and Ease Off Treatment

      Do more yoga and stay in the light!
      Donna

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  28. tcs says:
    July 18, 2013 at 6:11 pm

    hello…well i have been investigating a masectomy…i know crazy huh (just kind of want all this behind me and never thought i would say this but new larger boobs to boot). i found out that my special program thru medical does not cover reconstructive…there are 2 surgeons in marin. so 15-20K for nice new boobs. the mri/aurora closed in fresno so i would have to go to la or san diego.

    i am back at a loss again and my surgeon doesn’t want me getting a mammogram…now this is a first. why??? i was just hoping that after my surgical biopsy there would be nothing to see and then i can go forward with my life.

    so…guess i need a cheer or go back to what i know.

    warmly,

    tcs

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  29. Sherry Mollo says:
    August 11, 2013 at 11:36 pm

    Thank you so much for this site. I have been praying for some sign of support of my gut level feeling to not move forward with surgery after a diagnosis of DCIS. Thanks to the comments on the blog and stories (including Donna’s which could have been mine), I am seeking more info about my specific tissue sample, about many of the issues raised in these stories (like grade etc.) and getting 2nd and 3rd opinions. So much anxiety could have been averted (I was thinking of quitting my stressful job) if I had some of this information. Luckily many of my friends support me in my endeavors to NOT just follow my doctor’s orders without questions and clear answers. After my research on my exact medical condition, I plan to detoxify and take up yoga. Does anyone else have positive recommendations of physical and mental changes I can make and of any specific nutritionalists/holistic practitioners I can contact in Southern California. I am 63 years old and otherwise healthy and vibrant. Sherry

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    • Kay Ashley says:
      August 13, 2013 at 7:36 pm

      I would suggest listening to audio when you sleep. Louise Hays has several available, one on cancer, that are fabulous. That will help mentally, and listening to them while you sleep gives you the subliminal advantage of hearing it 21 times for your brain to learn it.

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  30. jg says:
    December 18, 2013 at 9:52 am

    First, thank you _so_ much for this incredible website, and the many inspiring stories and great resources within!

    I’m hoping someone might have some advice on ADH: in particular, whether to get a second opinion of the pathology slides, any guidelines for ‘active surveillance,’ and what type of doctor should oversee an active surveillance program.

    Some background: I recently had a biopsy to sample two areas with calcifications that had changed over the course of a year (based on digital diagnostic mammograms). The pathology report indicates that one area is benign, but the other region showed Atypical Ductal Hyperplasia (ADH) with some focal necrosis. When I was given the diagnosis on the phone by the doctor who performed the biopsy, she said that surgical removal of the area is the recommended treatment, to be sure there’s nothing more serious in that region. The necrosis was of concern to her. So, I’ve been referred to a surgeon. On the phone when I received the diagnosis, I did ask about active surveillance, so she referred me to a surgeon who is known to consider surveillance as a potential approach. I haven’t yet scheduled the appt. with the surgeon.

    A few questions…

    1. For ADH, is it always important to get a second opinion of the pathology slides themselves? (At the moment, my thought is to get a second opinion only if surgery is very strongly recommended. At that point, I think I would send everything to Dr. Lagios for evaluation. Does that seem ok?)

    2. Is there a general protocol or set of guidelines for “active surveillance”? From what I’ve read on this site, I think would prefer to get the RODEO MRI annually, and skip further mammograms. I wonder, are there any published guidelines or papers supporting annual MRIs instead of (not in addition to) mammograms? I’d love to have something to bring to the surgeon, but maybe it’s so case-specific that ‘guidelines’ don’t apply here.

    3. What type of doctor would oversee the active surveillance? I was a bit surprised that I was referred to a surgeon so quickly, even after saying that prefer surveillance. Would a surgeon be the one to oversee surveillance, or would this be done by a radiologist? I want to be sure I’m working closely with one person, who is sympathetic to the surveillance approach and understands my preferences… rather than having to confront this each time a calcification changes a bit.

    Sorry for all the questions! It has been a whirlwind of a week. Any insights or feedback would be most appreciated.

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    • dp4peace says:
      December 18, 2013 at 10:43 am

      Hi JG,

      So glad you found my website and have found it helpful and inspiring! Great questions…I wish I would have known to ask when I was first diagnosed with ADH and immediately scheduled for surgery for a wide excision biopsy (to get a bigger sample). I had no clue that was really a lumpectomy and quite an invasive surgery with the highly invasive procedure of placing a wire through the breast and having a mammogram machine smash down and radiate my breast before the surgery (so the surgeon could know where to cut). This was worse than the surgery I thought! Here are some links on my new website regarding active surveillance and RODEO MRI:http://dcisredefined.org/choices/active-surveillance/ http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/ — you can print out the studies. Most surgerons haven’t even heard of RODEO MRI. I was just told by someone who contacted Dr. Lagios that there is a new SIEMANS MRI which is even better — but I have not researched this yet. Dr. Esserman told me she probably would not have ever done surgery on me after being diagnosed with ADH. She would have prescribed tamoxifen and then do mammos or MRIs every 6 mths. It does seem odd that the person who would oversee one’s care in these cases is a surgeon (as they are more apt to do surgery if there is anything suspicious-looking.) I had some calcifications in another area of my breast (from mammo June 2011) which I did not biopsy….just doing RODEO MRI annually to monitor. They haven’t even shown up on MRIs the last 2 years. I am scheduled for my annual RODEO MRI on Jan 14, 2014. I have not seen any breast specialist/surgeon/oncologist since my visit with Dr. Esserman Feb 2012. I see no point unless something shows up as suspicious. Most breast surgeons/oncologists wioll suggest 6 mth mammos or alternate with MRI every 6mths to monitor. Every case is so individual and you have to follow your gut with who you choose to oversee your care and how you will monitor. Keep reading and investigating. I have tried to make it easy for someone like you to access all the info in one place that I wish I had in the beginning. The new website http://www.dcisredefined.org should keep you quite busy! I also would recommend finding a good integrative or naturopathic Dr. and try to determine any nutritional or hormonal deficiencies/imbalances. This, I believe, is the missing piece in understanding the causes of breast cancer and how we can best minimize our risk. Please feel free to ask more questions as you go. Your questions are helping many more women who will undoubtedly have the same questions! Peace and blessings, Donna

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      • jg says:
        December 18, 2013 at 4:40 pm

        Thank you so much, Donna, for your thoughtful response. I can’t tell you what it means to me, that you would take time from your day to offer such a kind and well-informed response.

        >Great questions…I wish I would have known to ask when
        >I was first diagnosed with ADH…

        I’m so sorry for the painful process you went through, as you became a pioneer who brought these issues to the attention of us all.
        Truly, the only reason I knew to ask my questions about surveillance, etc. was because I was fortunate enough to find your website as I awaited my biopsy results. You’ve developed a forum that is unique and so important; again, thank you.

        Regarding ‘active surveillance,’ I appreciate your pointing me to your great dcisredefined site. The links to research articles are immensely helpful.

        > I have not seen any breast specialist/surgeon/oncologist since
        >my visit with Dr. Esserman Feb 2012. I see no point unless
        > something shows up as suspicious.

        The approach you described for yourself makes so much sense. I truly applaud you for finding a path that works for you, amidst the pressure to sample-screen-sample! I know it must have been quite a fight, but well done! And thank you for sharing your experience and developing this resource.
        Wishing you a great outcome on your upcoming MRI. I’ll be thinking of you on Jan. 14.

        All the best to you and to everyone, for a healthy, strong, and happy 2014!

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  31. Sherry Mollo says:
    December 19, 2013 at 10:57 am

    I have been struggling emotionally since August with my diagnosis of DCIS. Thanks to this site I have researched, obtained my records, changed my diet etc. I feel my diagnosis was reacted to extremely and I was put on an “assembly line” for MRI surgery and radiation. Due to my research I am anxious but also not worried totally about my prognosis. My question is where do I go now since I do not agree with their treatment plan (given by a surgeon not an oncologist)? How do I find an active surveillance doctor? I live in Southern Calif. love to u for this website. Sherry

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    • JG says:
      December 20, 2013 at 2:23 pm

      Dear Sherry,
      I just wanted to offer some words of support. I’m very new to all of this, and I’m steep on my own learning curve.
      I just wanted to applaud you for being thoughtful about the ‘status quo’ treatment. Please be strong, and know that any questions and concerns that you have are very legitimate, and deserve very clear answers. Never doubt that.

      [A note about my own situation, which transpired over the past couple of weeks. I was talked into a biopsy (it never even occurred to me that I could decline this biopsy!), which showed ADH, and of course, surgery is recommended, appointment with surgeon upcoming. I’m here to tell you that I will not have surgery, and that’s not up for negotiation. That’s a line in the sand that I’ve drawn. If my biopsy had revealed DCIS, I would take the same response (for myself). The biopsy itself was unfortunately complicated (two areas that were difficult to access, for various reason), the healing sites are still quite painful (a week out), and will likely be disfiguring. For any future invasive procedure, I will require strong evidence that invasive cancer exists in my breast, and the evidence must be presented to me in such a way that I completely understand it and agree with the requirement for another invasive procedure (be it another biopsy, or surgery).
      I’m in the insanely fortunate situation to have access to a surgeon who is sympathetic to active surveillance as a treatment option. That’s who I’ll meet with in the coming week or so.

      Sherry, I wish I knew what to say, since you’re faced with strong advice toward surgery and you have no doctors available to you are willing to entertain other options. I truly hope others here will respond with some advice. Meantime, please stay strong.

      best,
      JG

      ps. From Virgil, the man who brought us “love conquers all” also comes these words of wisdom: “The medicine increases the disease.”

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      • JG says:
        December 20, 2013 at 2:53 pm

        Sherry, please know that refusing surgery is absolutely a very legitimate decision.
        It’s the decision I’d make for myself.

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  32. litlady1 says:
    December 20, 2013 at 2:44 pm

    Wow what a thoughtful reply! Two immediate comments: first I later thought I should have refused the biopsy but like you I never imagined I could. Looking at my mammogram the questionable area was hardly different from other non questionable areas. Radiologist predicted “probably benign”. Now after my research I see the whole thing could have been left alone. The biopsy was painful and more invasive than I was led to believe. No scarring etc. but long heal time. Second I thank God that my doctor/surgeon was so insensitive even rude. If she had been empathetic, I would not have become angry, done extensive research, and pulled all my records and tissue samples. Anyway I am contacting City of Hope looking for an active supervision sympathetic doctor. Thanks. I agree with you no surgery for me at this point. I know of someone who diagnosed with DCIS had a double mastectomy. I do not know all details–just hope it truly was necessary. Blessings Sherry

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  33. litlady1 says:
    December 20, 2013 at 2:45 pm

    Litlady1 and Sherry are same person. It is complicated.

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  34. litlady1 says:
    December 20, 2013 at 3:00 pm

    Dear JG. I never saw that response because my computer never seemed to be able to post comments nor receive replies. So recently I reset up blog on my iPhone under litlady1. Now it is December and I have done nothing but change diet work on meditating etc. I hope this new blog source will get me some responses re doctors. You sound like a strong woman. Hope to hear more in the future. Best of luck. We can be co-supporters.

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  35. dp4peace says:
    December 20, 2013 at 3:49 pm

    Hi JG and Sherry,
    Just wanted to say thanks for sharing your thoughts, questions and perspectives. I actually think the advice Kay Ashley gave to Sherry back in August was extremely valuable. Although I have not listened to Louise Hay’s CDs, I have listened to BellaRuth Naperstack’s guided imagery CDs and they are wonderful. The mental part of DCIS and the fear of breast cancer is probably the biggest hurdle to overcome. Anything we can do to eliminate the stress, fear, anxiety, etc. will also help our physical healing. Please see all the sections here: http://dcisredefined.org/integrative-solutions/natural-risk-reduction/ especially “transorm stress.” Also check out the link to innovative doctors: http://dcisredefined.org/resources/integrative-doctors/
    Sherry, since you are in So. Cal, I would highly recommend Dr. Kristine Reese (naturopathic Dr) at Lotus rain clinic in San Diego — http://lotusrainclinic.com/

    I have not found a breast specialist Dr. in So. Cal that I have felt is in alignment with my decisions for no mammograms and active surveillance only through annual RODEO MRI. Dr. Esserman from UCSF has ordered my last 2 MRIs and I have not seen her since Feb 2012. I see no reason to go to a breast surgeon, radiologist or medical oncologist if I am not choosing their treatments. Since I have been a patient of Dr. Esserman’s (flew to SF to see her) and she is a proponent for less treatment, I consider her to be my overseeing Dr. now — and will have the MRI results sent to her. I trust her because she is advocating for leaving low grade DCIS alone — and NOT biopsy unless it looks like high grade DCIS or invasive. She was pushing me to do tamoxifen, but I was not sold at all. I have my next MRI scheduled for Jan 14th at Saddleback Memorial Medical Ctr in Laguna (I switched from UCI due to my insurance switching). So….if you can not find a Dr. in So Cal, you may want to consider going to UCSF as I did. Dr. Esserman is on a 6 mth sabbatical right now, but since she is the Director there, other surgeons and oncologists will probably be of similar mindset and be more open to overseeing active surveillance. I loved UCSF and how they provide a research asst to take notes and record your appt. They also pair you with someone similar who has taken a similar path…and they call you for support and advice. This is part of UCSF’s decision-making services….and it really should be the model. The problem I have with UCSF is that they made me wait 3.5 hours to see Dr. Esserman — and they said this is pretty standard. She only sees patients 1x a week on Wednesday, so this was quite a challenge for me considering I have two young kids who need their mom during the week! But….I felt it was IMPERATIVE that I meet with Dr. Esserman personally as she was sort of my “saving grace” — from the medical world regarding DCIS. Next came Dr. Lagios. But the most important thing for me was getting over the big fat FEAR that was deeply rooted. You have read my story, but here is the short version: http://dcisredefined.org/stories/donnas-story/

    Keep reading throiugh all the links on my new site and find a knowledgeable and compassionate naturopathic Dr that has worked with people with DCIS or BC. I am re-reading Dr. Lee’s book at the moment which is EXCELLENT and makes so much sense……”What Your Doctor Might NOT Tell You about Breast Cancer: How Hormone Balance Can Help Save Your Life” by Dr. John Lee, MD: Dr. John Lee, an internationally renowned pioneer in bio-identical hormones, presents a hormone balance program to help reduce your risk of breast cancer or a breast cancer recurrence.

    Bravo to you Sherry for changing your diet for the better and meditating. You are your best health advocate! xoxo, Donna

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    • gofish says:
      January 24, 2014 at 7:53 pm

      Dear Sherry, Donna, and all,

      I hope everyone’s doing well.

      Sherry, back in Dec., you mentioned being anxious but not too worried about your DCIS diagnosis. At that time, you were seeking a doc who supports active surveillance. Any luck finding a good doc? How are things going?

      In my neck of the woods, I’ve had some questions answered, but many more raised.

      My initial diagnosis (based on biopsy of microcalcifcations detected by mammography) was ADH. It was under the assumption that ADH was correct, that I made my great claims to myself – and I posted those claims here! – about refusing surgery. (ah, what confidence I had, about the best route forward!)

      For me, things have become a bit more…. Well, muddied… since that time.

      After the initial diagnosis of ADH, I got a second opinion on the biopsy slides from a consultation lab that is highly recommended, including on this site. This doctor is certain my biopsy slides show intermediate DCIS. Score of 6 on the Van Nuys scale. This doctor, based on viewing my mammogram and biopsy slides, strongly urged excision. Given that I’m a “6” on the scale, with adequate excision (meaning good margins, I gather), I would not need radiation or Tamo.

      The doc’s advice was to get an MRI in 8-10 weeks after the biopsy date (so that everything could heal up, as wound healing can look like a tumor), which might (though he doubts it) show DCIS beyond the biopsy site. The point of the MRI is to fine-tune the surgical approach. Barring some new discovery via MRI of extensive DCIS, it’s probably a 6-7 mm area, or golf-ball size lumpectomy (to get margins).

      I asked the doctor whether I should seek out a RODEO MRI. His response was that’s less critical than it was 10 years ago. [Please take this with a grain of salt, as it’s just one person’s opinion, but his thought was that MRIs with “dedicated coils” for breast imaging are quite good, so it’s less important to seek out RODEO MRI. Perhaps the gap is gradually closing, between RODEO and other ‘dedicated coil’ breast MRI technologies. I’m sure this is nuanced, and something that we each need to investigate for ourselves.]

      With that second opinion (that I have DCIS, not ADH) in hand, I met with my surgeon. She is absolutely great, everything I hoped for, and more. She’s sympathetic to active surveillance as an option. However, she made a very compelling case that I should just go ahead and get a lumpectomy (without radiation or tamo), followed by active surveillance.

      Arg! I was really hoping that a surgeon would tell me that I don’t need surgery at all. (How’s that for a pipe dream?)

      I pushed back a bit, asking for an MRI (next month, to be >10 weeks post-biopsy, so that the hematomas from the 2 biopsy sites will have a chance to heal). My surgeon was fine with that. In fact, her concern about the MRI is that it’s quite sensitive and will reveal entirely new areas that will concern me. She mentioned “going down the MRI road,” which I understand can involve chasing every little dot with a biopsy, etc. I reassured her that I wouldn’t overreact to blips and bobs detected via MRI.

      It seemed overall, my surgeon doc doesn’t have a lot of confidence in MRI’s to distinguish DCIS vs. invasive cancer. My hope is that MRIs can make this distinction.

      Ultimately, despite the fact that my surgeon views MRIs as having limited informative value (in terms of deciding how to treat my DCIS), that’s what we’re doing. An MRI in ~5 weeks, and we’ll take it from there.

      I’ve bought some time. But honestly, I feel like I’m countering the expert advice of two great docs (the second-opinion consultation who read my slides, and my local surgeon), both of whom feel a “simple” lumpectomy is the best route forward.

      After the MRI, I can’t imagine any interpretation other than surgery. The only question is how extensive.

      The thing is, I really don’t want to have surgery!!

      Maybe I’m in a good window, where excising this DCIS area will save me more extensive surgery later, and avoid later radiation and Tamo? I want to make a rational decision here, and maybe surgical excision is the most rational choice?

      why am I so resistant to surgical removal, when that was recommended by two experts?
      I guess I’m resistant because I feel I’m just buying into the conventional wisdom that DCIS = cancer = surgery. I also feel the numbers aren’t great, regarding the outcomes of DCIS left untreated.

      I wish I could join a clinical trial of women who leave DCIS alone, and focus on eating/moving better in their lives.

      argh. I’m sure, after my MRI next month, I’ll be strongly encouraged to surgically excise the area with DCIS. If that happens, I’m not sure what ammunition I have, to argue against surgery. I actually really don’t want surgery, and in my gut, I feel the changes I’ve made recently (eating better, exercise, stress reduction) should be helpful.

      I want to ask you guys, how firmly should I stand, against having surgery for intermediate-grade DCIS?

      If I do have surgery, I know it makes sense to ensure that MarginProbe is used. But I hope it doesn’t come to that.

      love,
      JG

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      • gofish says:
        January 24, 2014 at 8:09 pm

        >I also feel the numbers aren’t great,
        >regarding the outcomes of DCIS left untreated.

        to clarify, by “the numbers aren’t great,” I meant that the numbers aren’t robust. From what I can gather, there aren’t robust/useful numbers regarding outcomes for women who choose to leave DCIS alone (untreated).

        In making my decision about surgery vs. not, I would like to see good (i.e., robust and well-documented) numbers regarding the outcomes for women who leave DCIS untreated. The popular literature says that such numbers are unavailable, as women with DCIS decide to treat it. Hmm. I’m sure those numbers are out there.

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  36. litlady1 says:
    December 20, 2013 at 3:56 pm

    Dear D4peace: no time to respond fully now but will give a full answer later just wanted to THANK YOU and let you know I follow your site and have followed tons of your advice. I do listen to CDs at night and am happy to get more suggestions. I am a high stress person. But I never saw that response. More later. Blessings ang peace.

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  37. JEY says:
    January 22, 2014 at 12:10 pm

    Dear Donna

    Firstly, thank you for your wonderful websites which have been a great help to me since my diagnosis.

    I live in New Zealand but will be visiting San Francisco in the middle of the year, and am aiming for an appointment with Dr Esserman to discuss my complicated DCIS history. Do you know when she is returning from her sabbatical and can you give me some indication of her consultation fees (I’m not covered by insurance)?

    In the meantime, I have an appointment soon with a holistic doctor who specialises in hormone treatment. He has been recommended by a friend, and has fronted a television programme here called “Is Modern Medicine Killing You”.

    Here in NZ the breast surgeons only offer one treatment – SURGERY, which so far I’ve been able to resist.

    Please have a read of the following link about the treatment of prostate cancer here in NZ, which I think has parallels with the treatment of DCIS. We women don’t suffer incontinence or impotency, but we can end up with disfigured breasts and the severe after-effects of surgery.

    http://www.stuff.co.nz/the-press/news/9623384/Doctors-slate-prostate-leaflet

    Thank you and I look forward to hearing from you.

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    • JG says:
      January 24, 2014 at 8:26 pm

      Dear JEY,

      I wish you all the best in your search for a doctor whose goals and perspectives align with yours. I know it’s not an easy task.

      In response to your suggestion and link for the prostate cancer article, I would just add this people’s pharmacy show as a potential resource:

      http://www.peoplespharmacy.com/2013/12/21/928-supplements-vitamins-blood-pressure-and-cancer-screening/

      They address the risk of cancer over-screening. But, the connection between prostate and breast cancer over-screening is not made. (In fact, the prostate cancer docs make a point to distinguish the two cancer types.) While I wish they’d commented on DCIS and over-screening/ over-treatment for breast cancer, I think there are lessons to be learned from the progress in prostate cancer.

      at some point, the dots will be connected, among cancer types.

      JG

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  38. litlady1 says:
    January 25, 2014 at 8:59 am

    Dear JG. I am no expert and do not want to advise others on what to do. However based on my constant on going research I am also adamantly against surgery for me. I feel the whole DCIS medical community is in massive confusion and since medical communities abhor confusion they relay on what has always been done. But I am like an ostrich right now and have yet to get a second opinion hiding my head in the sand. Donna has given me some great ideas what to do next but based on what I have read and the details about my biopsy I do not feel too unsafe. I think you could get more opinions search out a Naturapathic doctor and work on your mind body connection and stress. I was unwell a lot of my youth and got into nutritional studies and I truly believe our bodies can heal themselves. Also a thought I had when my surgeon recommended similar to yours was of course surgeons only see surgery as an answer because that is their lens on healing. I have much more to tell you but may not have answers. In Mind Over Medicine dr rankin says seek out healing doctors sympathic to working with you to heal yourself. Read that book. That search for a proper doctor is what I am doing now plus guiding healing imagery, research, nutrition, exercise etc. I will be happy to give you my home email but am not sure how to do that without being public. If anything we can be a support group of 2. One last thought. A golf ball size excision sounds major to me. Best of luck. I admire how much control you are taking over this.

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  39. litlady1 says:
    January 25, 2014 at 9:02 am

    Dear JG did you get my last post. It was an extended response to your question. Sherry

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    • JG says:
      January 25, 2014 at 9:32 am

      Dear Sherry,
      thanks so much for your response. I’m glad to hear that your research is constant and on-going…. I know it’s exhausting at times, but so important to gather the information you need to make decisions that are right for you. To me, it doesn’t sound like you have your ‘head in the sand’ at all! Quite the contrary.

      I do agree, it seems like the community is facing quite a bit of confusion. The more I read, the more confusing it seems. Like you, I prefer to step back, take some time, and make sure I gather all the information I need to make a decision.

      The second opinion I received (on my biopsy slides) was quite useful to me, as it changed my diagnosis (from ADH, to intermediate DCIS). It involved nearly $700 out of pocket. A bit painful financially, but I think it’s worth it to me, to have a more accurate diagnosis.

      My fear is not only having one surgery (and yes, ‘golfball size’ seems quite substantial to me as well!), but also that I’ll be on a track for many more surgeries. Even if the surgery was 100% successful, with clear margins, I have a sneaking feeling that DCIS might crop up in other places in the coming decade or two, and if I’m on this track, I’ll biopsy, be subject to more surgery, etc. To me, I feel I’m at a major fork in the road on how to approach this issue, moving forward. I also know that medical knowledge is increasing at an exponential rate. So even next year at this time, available options and recommended treatments may be quite different than today.

      Sherry, thank you so much for the book recommendation, ‘Mind over medicine.’ I’ll definitely order that book today and will read it carefully!

      I stumbled across this interesting article from last April:

      (If the link above doesn’t work, one can google “Our Feel-Good War on Breast Cancer Peggy Orenstein”, and the article should be the first search result.)

      all the best, and keep reading and asking questions,

      JG

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  40. litlady1 says:
    January 25, 2014 at 9:17 am

    Hi go fish. I don’t think the numbers are out there. I do believe 99.99 of diagnosis of DCIS are treated with surgery. I know of a lady (don’t know details of her specific diagnosis ) who said she had DCIS and was promptly told to have a double mastectomy (she had it). I was horrified. I just hope it really was necessary. I holding out right now because I tend to be surgery phobic and I just want to be clear in all this confusion. I heard from source that she is avoiding surgery and undergoing some type of hormone treatment in San Francisco that is considered cutting edge (ironically). Have to go. Will try to say more later

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    • JG says:
      January 25, 2014 at 9:39 am

      yes, I think there’s a clinical trial, in which some women with DCIS are given Tamoxifen only (no surgery). Me personally, I would be concerned about the side effects of Tamo, and might actually opt for surgery if that were the choice presented.

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  41. JG says:
    February 15, 2014 at 8:52 pm

    Re: Recent BMJ study – old news, or game-changer for your thinking?

    Dear all,

    I hope everyone’s doing well.

    As I await my MRI in a few weeks, I feel fortunate for the time I’ve ‘bought,’ as I await this MRI. [My ‘story’ appears at the end of this note*.]

    So, I’m now researching more deeply, as I await the MRI appointment early next month.

    I confess the recent NYT article on mammograms has influenced my thinking.

    These articles in the NYT were prompted by this study:
    http://www.bmj.com/content/348/bmj.g366
    .. which has the associated editorial in the same journal:
    http://www.bmj.com/content/348/bmj.g1403

    I’m sure these ideas will continue to spread throughout the popular press in coming days and weeks.

    I was in the process of coming to grips with the decision of a lumpectomy (sans radiation or tamo), after the MRI (hopefully) confirms that my DCIS occurs in one particular area. Based on biopsy, the area is ~6 mm, so for “good margins,” a “golfball size” area of tissue would be removed. I’ve asked about availability of MarginProbe to confirm good margins, but i await a response on this front.

    However, the recent BMJ study (and associated press) makes me pause. I guess, in my heart of hearts, I’m looking for a reason not to go through with surgery, and this recent study might support that.

    sorry for the long prelude, but I’d like to ask: Does the BMJ study influence your thinking about treating ‘problems’ that were diagnosed by mammography alone (i.e., no detectable lump or other manifestation of a problem)? Or, is this kinda ‘old news,’ and not a game-changer?

    best,
    JG

    *[Sorry if this is repetitive, but my story is this: apparent calcifications detected via regular ‘screening’ mammogram, prompting diagnostic mammogram; two areas of micro-calcifications detected on diagnostic mammogram, prompting biopsy of both sites; then a stereotactic biopsy of both sites, one benign, one initially diagnosed as ADH by in-house lab; I requested the biopsy slides and recent mammograms be read by M. Lagios; he upgraded ADH diagnosis to intermediate DCIS, score of 6 on Van Nyes scale. He clarified why he thinks it’s DCIS and not ADH: 1) I have: nuc grade 1 and 2; 2) Evidence of necrosis. Generally not a feature of ADH. Commonest circumstance is DCIS; 3) My ductal lobule units. Changes have completely eliminated normal structure. Cells have been replaced by neoplastic structures; 4) Also supporting DCIS, pleiomorphic microcalcifications. Some even show branching. He recommended the following: breast MRI, 8-10 weeks after biopsy, to let everything cool down. MRI too soon after biopsy would give false positive. Little blood vessels in wound repair light up the same way as tumor. He definitely advised surgical excision. The idea of the MRI is that it might detect additional areas of DCIS, thus altering surgical plan. Speaking under the assumption that it’s localized, to the apparent ~6 mm, excision with ‘good margins’ should be sufficient; no need for tamo or radiation.]

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  42. litlady1 says:
    February 17, 2014 at 9:33 am

    Dear JG: you did not mention your age. That might change my answer. The study was very interesting and prob will begin to change mammo frequency for younger women. I am always amazed how these reports focus on the mortality rate. Why aren’t these studies focused on prevention? Why not no mortality rates with early detection? On the other hand I feel all this testing might be too much. Are you worried about the MRI? I refused one. However my stats are different from yours and I am 63. Currently I am seeking a doctor for active surveillance for my DCIS. To do that I have to take full responsibility for my consequences. Are you willing to do so if you refuse surgery? However when you say “in your heart of hearts” I feel that you should listen to your intuition and not jump into something you have doubts about. However again you have an excellent doctor advising you from all reports. So what a quandary. I have only one area of suspicious calcifications stage 0 and no necrosis. Yet they recommended the full board–surgery radiation and drugs. Please! So I am suspicious of the whole cancer industry. At least they are not recommending a full mastectomy. I do not know what to say except to listen to your inner voice and research as you have obviously been doing. The BMJ articles do not really change my attitude except that my biopsy was prob unnecessary. Again on the other hand since it I have drastically changed my diet and attitude towards cancer. I have to thank my diagnosis for that. Best of luck in your decision making.

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    • JG says:
      February 21, 2014 at 12:25 pm

      Dear Litlady1, thanks for your response. Lots of good issues there to consider. Hmm… I’m not worried about the MRI per se, but I guess maybe I should be?
      In your situation, the advice of surgery, radiation, plus drugs really does seem like too much!! That’s good you’re questioning it, and making efforts toward prevention (through diet, etc.)
      I’m in my early 40’s, which factors into why surgery is recommended in my case. Arg… even through I’m not 100% comfortable with the idea, I may go through with it. Time and research isn’t helping me decide, so I may never be fully comfortable with either decision. If I didn’t have surgery, I would be doing that completely on my own, against the advice of two excellent, independent doctors and the loved ones around me. Even if I’m willing to deal with the consequences of not having surgery, I’m essentially asking them to, as well. best, JG

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  43. JG says:
    February 22, 2014 at 5:30 pm

    Well, I’ve just spent most of the day reviewing the literature, popular press, and talking with my family. I’ve come to a decision (which may seem like a lack of a decision!…). I’m going to wait 6 mos, and then decide on surgery vs. not. Meantime, I’m going to do everything in my power to tilt my lifestyle toward healthy (in terms of diet, exercise, stress-levels, sleep, etc.) I’ll revisit this in August. Whatever’s going on in my breast has been doing so for many months, probably many years, and I owe my body 6 mos to see if I can reverse the trend through good habits.

    we’ll see…. wish me luck!

    I’ll let you know how it goes.

    best,
    JG.

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  44. dp4peace says:
    February 22, 2014 at 5:57 pm

    Happy to hear you have come to your decision! Time and good health habits can do wonders for the body-mind-soul. Sending much love and light, Donna

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  45. litlady1 says:
    February 22, 2014 at 6:06 pm

    Congrats on your decision! If you have not heard of it here is a website to look at chrisbeatcancer.com. I found it inspirational and although it is not breast related cancer I feel his advice might profit you. Sign up for his emails. He has lots of info on nutrition and avoiding toxins. Just got one today from his site regarding non food toxins to avoid or be aware of for example. Also Donnss green drink and all her recommended books. Also looked today at two moms in the raw. Tho famous I had never heard of them. So much out there. My problem is stress control because I have others going on in my life outside of my control. Nutrition and exercise is withiny control. So happy for you.

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  46. JG says:
    March 7, 2014 at 7:21 pm

    hi all,

    with respect to my story posted here, I just wanted to provide an update, in case it’s useful for others weighing their choices about a DCIS diagnosis.

    This will be repetitive to the kind folks who have listened to me earlier, but just to recap…. After calcifications in a mammogram prompted a “diagnostic mammogram”, which inevitably detected calcifications that raised concerns, two sites (with concerning calcifications) were biopsied with a vacuum-assisted stereotactic device (maybe you could call this device a ‘needle,’ but that seems debatable). The move from ‘concerning mammogram’ to ‘stereotactic needle biopsy” seemed automatic. I didn’t understand that biopsy of these two locations in my breast was an actual choice for me.

    I retrospect, I would come to realize that the “to biopsy, or not” is a significant fork in the road. Given the data available now, I would NOT have opted to biopsy the sites identified via mammogram.

    Anyways…. I did move forward with the biopsy, because I felt I was pressed for a decision. [More accurately, it never occurred to me that I was “deciding” anything at this point. It was basically, something odd on the mammogram; thus, we’ll schedule you for a biopsy. I didn’t realize I had a say in the matter. ]

    So….

    Had the biopsy of both sites in my right breast. (I’m weirdly small-breasted. Of the two biopsy sites, one was very close to the nipple, the other site was a couple inches back. It seems weird, there are two “sites” in my little breast…. I’ve never referred to them as ‘breasts’ until all this…)

    I would not have actively chosen the biopsy path if I had understood I had a reasonable choice not to biopsy… but anyway), after I had the breast MRI (which did not raise any new flags) and then met with my (excellent!!) surgeon for a second time, and we agreed on the “wait 6 mos” plan. Moving forward, for active surveillance of DCIS, the plan is to alternate mammogram and MRI, every 6 mos. [She noted that most in my position, with a relatively small (6mm) localized area of DCIS would opt for lumpectomy, she’s also willing to support my decision to reassess in 6 mos. I’m very grateful to her, and I also appreciate that I might change my mind and opt for a lumpectomy in 6 mos time!]

    Rest assured, I’ll continue to explore this in the literature, and see whether I’m personally convinced by the data that I’ve opted for the best choice, for me. The reason why, in my “heart of hearts,” a lumpectomy (which I know understand is termed BCS) didn’t seem right for me, is simple: I didn’t (and don’t) understand the pros and cons, in a quantitative way, of lumpectomy vs. not.

    As I continue my explorations, I’ve stumbled across two sites that might be useful to others:

    1) People’s Pharmacy show about diagnostic screening, the “NNT” metric. It’s a good one…
    http://www.peoplespharmacy.com/2014/02/22/936-hazards-of-screening-how-the-hunt-for-disease-leads-to-overtreatment/
    [to listen to ~hour-long show, click “play the audio file,” just to the right of the man’s photo.

    2) Diagnosis and Management of Ductal Carcinoma in Situ (DCIS):
    http://www.ncbi.nlm.nih.gov/books/NBK32572/
    [One can view the various pages on this report, by using the “previous” or “next” buttons, at the top right of the page. Yes, this may seem like the “party line” on DCIS, but at least, as far as I can gather, the authors of this synthesis have no vested interest in the outcome. Personally, I’ve found this “e-book” to be a great source for understanding the data behind the “conventional wisdom.” Whether one agrees with the conclusions or not, it’s always worth knowing what studies inform the general conclusions, which are passed onto doctors and then to us as patients. ]

    Personally, I’d like to see the data for outcomes of women who choose to leave DCIS alone (no surgery or drugs). I gather that statistic has yet to be determined!

    On a more pragmatic note, I just had my first breast MRI. Here’s what I wish I’d known, and what I’d advise to a friend undergoing her first breast MRI:

    You need to bring two items:

    1) ear protection – even the ear-plugs you can buy at your local big-box store. (The headphones provided might slip out of place, and there you are, remaining completely still amidst dangerously loud beeping)

    2) foam pillow – the only 2 problems I had during my MRI were the noise (which basic earplugs would have solved) and the pressure on my forehead. When asked to stay completely still, for 40 min or so, if some weight is pushing on a particular spot, you’ll come to realize it. For me, I settled in and agreed on a posture where my forehead was pushing against the pad provided. After 10, 20, and then 30 minutes, that spot started to become intolerable. I made it through the time of the MRI, but just barely. 20/20 hindsight, I wish I had lied down, in the position I’m expected to keep for 30 min, identified pressure points, and then asked to have foam pillow (which I’d have brought) put at those points, reassessed, etc.

    In short, I think MRI’s could be far more comfortable than they currently are. I’m frankly shocked that these two measures above (redundancy on ear protection, and identifying/addressing pressure points) aren’t standard practice. Rest assured, next time I have an MRI, they will both be ‘standard’ for me! (I’ll bring my earplugs and pillows, and insist on it.)

    On other fronts, when I spoke with my (wonderful!) surgeon, I asked how unusual I am, in asking all these questions and challenging the standard treatment. I was rather moved to learn that she had been thinking of me in her ‘own time.’
    She said that she had actually been trying to understand why this decision (lumpectomy vs. not) was so tough for me. In her view, implementation of the “standard care” would mean a simple surgery, or “30 min in surgery.” I asked about MarginProbe, and apparently it’s not available to me,and even if it were, she feels it’s not useful for determining DCIS margins.

    So, I’ve kinda made a decision to wait 6 mos, and my doc supports this. While I’ve promised not to “worry” about my own situation during those 6 mos, I’ll certainly follow the literature about DCIS.

    JG

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  47. DX DCIS says:
    June 8, 2014 at 1:19 pm

    When I first read about Donna foregoing radiation, I thought she’s so reckless. Well little did I know that the long(very long) road of DCIS led me to the same place. I documented everything on my blog: dxdcis.blogspot.com. I was diagnosed with DCIS grade 3 at 39, but after my UCLA surgeon laid out all the consequences, I couldn’t bring myself to fully irradiate my entire breast because I would have minimal choices of preservation later in life. I decided to minimize my risks with Tamoxifen instead of EBRT.

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  48. litlady1 says:
    June 8, 2014 at 10:03 pm

    I am still doing nothing except diet vitamins mind body work no hope to get a second opinion from City of Hope. I was told that they support active surveillance.

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  49. Connie Bowman says:
    January 8, 2015 at 10:08 am

    An earlier post: Personally, I’d like to see the data for outcomes of women who choose to leave DCIS alone (no surgery or drugs). I gather that statistic has yet to be determined!
    Me too! anyone aware of any of these studies?

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  50. Cheryl says:
    January 14, 2015 at 4:04 am

    Has any heard about Chrysin? I was told that this is like a “natural” version of Tamoxifen, yet I’m having a hard time finding good data on it. I found some information that it is a alternative aromatase inhibitor and there were other ones listed (flavonoids) besides Chrysin, Quercetin, Naringenin, reservatrol, apigenin, and some others. Has anyone taken any of these or have discussed this with a Naturopathic Physician?
    I also wanted to share that I had the Oncotype Dx test done and I received wonderful news!! My score was a 2!!! This meant that I have about a 5% chance of DCIS reoccurrence, and a 3% chance it could return as invasive. The only thing that I found to be confusing with the way figure these percentages on the woman of this test group was that a third of the woman did use Tamoxifen, so this test isn’t all truly 100% for woman who just did lumpectomy alone. Anyway, I started the new year off great!!
    Cheryl

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  51. Donna says:
    January 14, 2015 at 8:37 am

    Hi Cheryl,
    Congrats on the excellent news regarding your Oncotype DX test results!! I had not heard of Chrysin before. Found this good summary from Marnie Clark’s website, (which I have recently discovered and find very valuable): http://marnieclark.com/is-chrysin-a-good-natural-aromatase-inhibitor/ Donnie Yance’s excellent book “Herbal Medicine, Healing & Cancer” discusses some of the other alternative AI you mention:http://www.amazon.com/Herbal-Medicine-Healing-amp-Cancer-ebook/dp/B001C4RA7E I have taken Quercetin (and some others like DIM or Indole 3 Carbinol) for years following his recommendations. Besides supplements, there are also foods: to increase that have been studied to effect estrogen and reduce breast cancer (From Dr. Saxe, UCSD): ferrmented soy foods (especially South River or Ohsawa miso), seaweed, brassica (cabbage) vegetables, mushrooms, green and kukicha tea. Sandie Walters wrote a great article summarizing tamoxifen on our website: http://dcisredefined.org/choices/tamoxifen/ Be sure to see this link:http://all-natural.com/tamox.html 🙂 Donna

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    • JG says:
      February 14, 2015 at 5:10 am

      hi Cheryl,
      I also take Quercetin and Indole 3 Carbinol. Like you, I had a lumpectomy (a couple of weeks ago, in my case – it was a small, discrete region, surgery went smoothly, clear margins, etc.). For me, that’s all the intervention I plan to do, hopefully (along with nutritional changes and support, etc.). Will get breat MRI/mammograms (alternating every 6 mos) moving forward.
      For me, in terms of considering further intervention, the clincher was understanding the number needed to treat, in order to help one woman. Seemed quite high to me, given risks.
      I await news on the genetic test. That’s wonderful news that your score was so low!
      best,
      JG

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  52. Cheryl says:
    January 14, 2015 at 10:02 am

    Thank you very much Donna!!

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  53. Sherry says:
    January 14, 2015 at 10:47 am

    I am still grappling with what to do with my DCIS diagnosis two years ago. I have so far refused ANY treatment because of low grade, stage zero, and other low risk indicators. I received a referral to City of Hope and got all my test results and records, but the nurse on the phone with whom I was trying to schedule an appointment with an oncologist was very rude when I told her I was interested in working with a doctor who would oversee active surveillance. She told me that was “not the medical way” and they could not help me. They also wanted me to go back to St. Jude and repeat all my tests. Since I did not like the St. Jude agenda to get me into surgery, chemo and radiation, I doubt going back there will serve any purpose. Should I keep trying to have my general doctor refer me to a more sympathetic doctor in my insurance network? Or should I just go see Dr. Lagios? I am not stressed at all anymore over my diagnosis and have completely changed my diet and modified my lifestyle to some degree. I just do not trust those doctors and I feel peace doing nothing–but I would like to have someone agree in Southern California to work with me on surveillance. Thanks for any help or insight you can lend.

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    • dp4peace says:
      January 23, 2015 at 9:21 pm

      Unfortunately I haven’t found anyone in So. Cal who is willing to work with “doing nothing” other than naturopathic doctor. The best person I could recommend to “oversee” your situation is Dr. Laura Esserman at UCSF. There really is nothing they (the Western medical Drs.) can offer us other than “standard of care.” It just doesn’t exist presently. As Dr. Esserman has said, we must demand it! That means refusing the standard of care and going elsewhere. Someone that could “work” with you is Dr. Kristine Reese, a naturopathic Dr. in San Diego, but she can not order imaging tests such as MRI. I have a very nice primary care Dr. who is compassionate and has ordered my MRI in the past. I am seeing her next week and if all goes well and she orders my MRI, I will give you her info. The only thing to “DO” is to LIVE HEALTHY and stay away from stress and fear about DCIS. An annual dedicated breast MRI is the best way I know to monitor a “higher risk situation.” Please stay proactive regarding breast health!! http://dcisredefined.org/2014/05/23/proactive-breast-health-club/

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  54. Milly says:
    February 24, 2015 at 7:57 pm

    Hi Sherry..saw your post. Did you get a second opinion about your DCIS ? I was diagnosed in September by my local breast center. They told me the pathologist was renowned and unlikely to have misdiagnosed me. They pressed for a lumpectomy followed by radiation. I was overwhelmed with these diagnosis. I went to see an oncologist on my own and told him I did not want surgery. He suggested tamoxifen as a preventative. He also told me it was unlikely that my pathologist had misdiagnosed me..I considered it but not being in menopause yet and possibly putting my body into it prematurely made me pause. Anyhow my regular doctor pleaded with me not to not do anything. Finally I went for a second opinion in NYC at a well known cancer hospital. They looked at all of my pathology slides from the other center and my mammogram films from 2009 to the most recent. They had a team of pathologists look at my slides and diagnosed it as ADH. I had the surgical biopsy shortly after and it was found to be ADH..I’m so glad I went for a second opinion, so I’d recommend that first to anyone who is diagnosed with low grade DCIS .

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  55. Carrie Ann Salvi says:
    April 10, 2015 at 9:34 am

    Thank you for doing this! My story is here: http://www.carrieannsalvi.com I have refused all conventional treatment aside from diagnostics, which I am trying to limit due to toxicity.

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  56. Stephanie says:
    September 15, 2015 at 2:05 pm

    Hi – I was diagnosed with DCIS in August 2014. I saw three different doctors at three different institutions and they all told me the same thing – that I needed an immediate mastectomy. Intuitively I felt that this wasn’t the way for me to go. I went to see a natural healer and have been working with her since.

    She immediately put me on the Alkaline Diet, along with dry brushing, drinking distilled water with lemon, and tissue salts. I have since done many fasts (water and juice) and enemas. It took months, but my pH levels finally became alkaline.

    Around the six month mark, I went and had another Mammo and MRI, which showed no progression, it was stable and was even slightly smaller.

    I am going to go for another round of tests next month and am looking forward to excellent results.

    Thank you, thank you, thank you for this website! It was one of the first ones I found when I started doing research after my diagnosis. It greatly helped to ease the burden and to know that I wasn’t the only one interested in alternatives.

    I’ll continue to share any updates I have.

    xo

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    • Milly says:
      September 15, 2015 at 6:48 pm

      Hi Stephanie, it does sound unusual that they would recommend mastectomy for DCIS. I was diagnosed by biopsy and they wanted to do a lumpectomy. I went for a second opinion at memorial Sloan Kettering hospital and they did a surgical biopsy which is a smaller removal of tissue than a lumpectomy. The results came back after the tissue was reviewed by a team of pathologists that it was not DCIS but it was atypia or ADH. Needless to say I’m glad I went for a second opinion. Make sure the doctors you go to are not associated with each other or go to the nearest major city with top specialists. Good luck to you.

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      • Stephanie says:
        September 17, 2015 at 2:31 pm

        Hi Milly,

        Thanks for your comments. Mastectomy was recommended due to the size (over 12cm). I had a core needle biopsy under mammo and I had two different hospitals (Juravinski & Princess Margaret – I’m in Canada) run the slides. I saw three different doctors and two of them did a team review, so I am fairly confident in their diagnosis. Not that it matters, I’m not following their recommendations anyway! 🙂

        I can’t overstate the importance of second, third, fourth, fifth opinions! If only to find a doctor that you are comfortable working with. We are supposed to get three quotes if we want to do a home reno, but we are going to take one doctors word for it? No way!

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  57. Milly says:
    October 6, 2015 at 5:28 am

    Hi Stephanie,
    If you can check out the cover of this weeks Time magazine from the U.S. Its front page is about DCIS and how women are not adhering to the standard of care.

    Milly

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  58. Stephanie says:
    October 6, 2015 at 1:46 pm

    Yes, thank you Milly! Someone else mentioned this article to me as well. Here is the link to the online article. Happy reading!
    http://time.com/4057310/breast-cancer-overtreatment/?xid=homepage&pcd=hp-magmod

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  59. baygirl says:
    December 15, 2015 at 12:29 pm

    Found your blog after being diagnosed with DCIS recently.

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  60. Robin says:
    February 26, 2016 at 5:00 pm

    I was diagnosed with adh borderline dcis multifocal. Up to 4 mm. The surgeon says a total of 3 cm. my Mri was clear. Should I have a lumpectomy and what are the chsnces the lumpectomy would show anything more than low grade dcis?

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    • Stephanie. says:
      February 27, 2016 at 7:54 am

      Hi Robin – sorry to hear of your diagnosis. I would suggest getting multiple opinions, have the screens run again, do your own research, and decide what the best option is for you. No one (doctors included) can tell you what the best thing is for you. Only you know that. If you do go the surgical route only work with a doctor that you are comfortable with. However, dietary and lifestyle changes can do a lot! An alkaline diet, dry brushing, sweating, etc. are great places to start.

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  61. Wendy says:
    August 4, 2017 at 1:12 pm

    It’s been 3 years since I was diagnosed with intermediate grade DCIS. Since that time, I’ve had consultations with 7 breast surgeons in 3 different states. Five out of the seven recommended I have a full mastectomy. This was such a difficult pill for me to swallow. How could they recommend something so barbaric for a condition that wasn’t considered an invasive cancer? I am so happy I listened to my gut and I didn’t rush into a decision that would impact me for the rest of my life. I finally decided to fly across the country to visit with Dr. Mel Silverstein in Newport Beach, CA. He reviewed my case and took me on as a patient for an oncoplastic reduction. My case was considered extreme due to that amount of DCIS in my breast and the proximity to my nipple, but I was willing to move forward if it meant I could save my breast. I also refused the recommended sentinel lymph node biopsy (that is performed during surgery) because I felt it was excessive. There was some risk involved, but it was my risk to take. I had the surgery on 7/20/17 and the results are in. No invasive cancer and clear margins. I am sharing this story because I want you all to know that you have options. Ask questions, get as many opinions as you see fit. There still so much research that needs to be done for those of us with DCIS. It’s up to us to chart our own course. Thank you Donna for creating this forum. I would have never had the courage to chart my own course if it was not for DCIS 411!
    Blessings,
    Wendy

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    • dp4peace says:
      August 4, 2017 at 1:52 pm

      Wendy…this made me tear up. I know the emotional toll it can take to go to all those appointments and be told mastectomy over and over. Thank you so much for sharing your experience and helping to lead the way for women to know they have options and they really have to get educated, take their time and be their own advocate. You are a shining example! There is no one right path…it is so individual with each case of DCIS and each person’s personality and values. Thank you for sharing here… many blessings for your total healing and well-being Wendy! Curious — were you told you also need radiation? tamoxifen or AI? What about future monitoring? xoxo, Donna

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      • Wendy says:
        August 4, 2017 at 2:21 pm

        Thank you Donna! It’s definitely taken it’s toll on me emotionally, physically and financially, but I would not have it any other way. I’ve learned so much during this process. They asked me during my consultation if I wanted radiation and I said absolutely not. The topic of tamoxifen or AI never came up. They want me to follow-up with them next year. I had a really good experience with him, his staff and the plastic surgeon, so going back once a year would not be out of the question for me. I just need to decide what sort of future monitoring I would like to have. To date, the mammograms, ultrasounds and thermograms have come up clean or inconclusive. The breast MRI’s on the other hand show the true story for me. Xoxo, Wendy

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      • dp4peace says:
        August 8, 2017 at 12:28 pm

        Thanks again Wendy for sharing so much of your story and insights. Have you looked into SONOCine Automated Whole breast ultrasound? Was it “dedicated” breast MRI or regular MRI(whole body with coil for breast)?

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      • Wendy says:
        August 8, 2017 at 7:11 pm

        I have never heard of the SonoCine Automated Whole breast ultrasound, but I will look into it. All of my MRI’s have been dedicated breast MRIs. Unfortunately, I did not get my first one until after my surgical biopsy. That’s how I found out I had DCIS.

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  62. Maya says:
    March 27, 2018 at 9:50 am

    I was diagnosed with DCIS in Jan of 2018, I went in for a routine mammogram and thought nothing of it when they called and said they need more images. I did the extra diagnostic mammogram and they found 4mm of calcifications. The doc suggested a biopsy, I went along with it trusting it’s fine. When the biopsy was done, the very next day I got a call and she said you have DCIS, if there was a cancer you want this is it! I broke down and cried, I do not want any cancers. After all the explaining and steps I needed to take for the treatment, I realized the hell I was in for as far as treatment, none of it made sense to me! How can they recommended radiation and tamoxifen for a 4mm DCIS! I had cried my eyes out, I thought I’ll die of this! Somehow in the middle of all the chaos I found this website and I just kept reading over and over it wasn’t an emergency. I am a very healthy individual who meditates over one and a half hour a day, I walk my dogs 4 to 5 miles a day at least 5 times a week, a strict vegetarian! I decided in all the stress as nervous as I was to do research, during my meditation I had prayed I’d find some answers! I ended up on an article in which Donna was featured. My gut told me to reach out to her! She was a blessing, my angel, my life line! She went above and beyond to help me and be available any time I needed her! She was there for me more than any family members! Everyone in my family wanted me to take the drastic steps of radiation and meds, remove your breasts do what it takes to be here! I can not describe in words on this post what Donna did for me! She educated me beyond my wildest dreams about this! The more I talked to her the more I knew the radical treatments were not for me! In the end it all came back low grade DCIS! This diagnoses was a nightmare, but Donna was my beacon! Every article, every research she passes on to me helped me and my husband make the decision to watch and wait! I could not have made this peaceful, correct and best decision without Donna’s guidance! There was never a time she did not answer my texts or went above and beyond to help me! She is my angel, my friend and I will never ever be able to pay her back for what’s she’s done! In this very trying and painful time, I became friends with her! All I ask, if something doesn’t feel right please question, do not do things out of fear! This journey not only made me mentally tougher but it also made me realize do not take treatments just blindly. Listen to your gut, your body tells you what it needs! Today and for now, not doing anything is the answer! I love you so much Donna! I am forever grateful that I meditated for answers and I came across your name! I hesitated to reach out, but to my surprise you have helped me mentally and spiritually beyond any words or thoughts that I could express! I hope your great Karma with this will pay you back a million fold! If it wasn’t for you educating me, I would have blindly done all the treatments out of fear! I would have done all the radical steps without ever standing up or questioning the doctors and their senseless math with DCIS! The harm that I would have done to myself out of fear is terrifying!

    Thank you so so so very much my sweet sweet friend, we will always be friends, I am not alone in this journey and I am so thankful for you, your love, knowledge, kindness, and ability to be here for us women who are absolutely lost in this mess called DCIS! God connected us for a reason, I do not believe in coincidences!

    With kindest regard, love and a heart filled with joy
    Maya

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    • dp4peace says:
      March 27, 2018 at 10:23 am

      Dear Maya,
      Thank you so much for all your kind and heart-felt words. It is amazing how this diagnosis can impact one’s life overnight and turn your life upside down!! I am just so happy that you are now on the other side of it….out of the nightmare and back to living your wonderful life with your family. You have certainly gone through a lot over the last few months and I am happy I could be there for you along the way to answer your questions and provide understanding where there was so so much overwhelm and confusion. The fact that you meditate and live a very health-conscious life brought you to question when things didn’t feel right….and you just kept asking for more clarification which is fantastic!! You also have a very loving family who were so so worried about you… and you remained strong despite all their worries and opinions on top of multiple doctor appointments and new information coming at you. I am so sorry you had to go through such a difficult experience. My heart felt for you so so much. I could feel your anguish with all of it and your story is a good example of why we need to keep sharing our stories and helping and supporting women newly diagnosed with DCIS. May you and your family continue to be blessed with peace, love, light, truth and health!! Namaste, Donna

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    • Wendy says:
      June 20, 2018 at 6:07 pm

      Thanks for sharing Maya! I have a very similar story and finding Donna’s blog changed the trajectory of my treatment for DCIS and my life. It took me 3 years and countless consultations before I figured out what was best for me. Continue to take care of yourself and listen to your gut!

      Blessings,

      Wendy

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  63. Sandra says:
    May 21, 2018 at 7:52 pm

    I have suspicious calcifications on my mammogram films and received a referral for a biopsy. The radiologist says it’s probably nothing and even if it’s something, it would be very very early stage and easy to treat. But it wouldn’t be easy to treat! DCIS is treated with surgery and radiation, just like invasive cancer (but without the chemo). To me it seems crazy to treat pre-cancer so aggressively. What’s next, just give everyone a mastectomy at 45 to eliminate all risk?

    I don’t even want to get the stereotactic biopsy. It’s more radiation and trauma to my breast and even if it’s DCIS, I wouldn’t be willing to have surgery anyway. I would only be willing to have surgery in order to save my life, not just to prevent a potential cancer.

    This is an awkward position to be in because I know there’s something suspicious on my mammo, but no idea what it is and unwilling to cut into the breast to find out. I would have been better off not doing the mammo in the first place. Now that I’ve researched it more, I learned that mammograms have actually not reduced the rate of advanced cancer at all. What a huge scam. They say go have a mammo to catch the cancer early, but there’s no advantage to catching it early if you still lose the breast and have to poison yourself with radiation “treatment.”

    My mother had DCIS when she was exactly the age I am now! She had a lumpectomy and no additional treatment. She probably didn’t even need the lumpectomy, who knows if it would have even turned into cancer. I can’t believe they’re butchering multiple generations of women for DCIS and they don’t even really know what they’re treating and whether it will ever become cancer. So frustrating.

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    • dp4peace says:
      June 20, 2018 at 10:11 am

      Well said Sandra! Thank you for sharing your experience, insights and instincts. I would look into DEDICATED breast MRI or SonoCine Automated Whole Breast Imaging for follow up: https://dcisredefined.org/choices/imaging-and-monitoring/

      Bye-Bye Mammograms: Hello SonoCiné Ultrasound

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    • Jane says:
      November 3, 2023 at 3:12 am

      Hi Sandra,

      I feel exactly the same as you. I don’t even want to have the biopsy. I already know I don’t want surgery if it’s DCIS so why do it? But they won’t stop calling me . Before I started this process I had no idea early treatment meant mutilation. With this mammogram process I feel every woman will have some sort of abnormality at some point and will have to have surgery. If every woman has an abnormality doesn’t that make it normal ? Do you have a recent update on what you did ?

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      • Sandra says:
        November 21, 2023 at 12:10 am

        I ended up going elsewhere for another mammogram a year later, and that time my mammogram wasn’t flagged and I didn’t get a callback. So I guess if I have it, it must not be very big. I’m going to get another mammogram in a few months, haven’t had one since 2019, PCP nagging. If this one is clear, I will stop getting screening mammograms and will only get a diagnostic mammo if I have a lump or suspicious symptoms. I have switched to a mostly plant-based diet.

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  64. Renee says:
    February 19, 2019 at 3:04 pm

    Many thanks first and foremost to Donna. I wouldn’t be telling my story here if it weren’t for her. Sorry if this is too long or boring, but Donna asked me to share, so here goes.

    I was diagnosed with DCIS in December 2015. Quite the shock, as i was a fit, healthy eating 50 year old. I am negative for the Bracha gene (my sister was tested, i wasn’t). My grandmother died of breast cancer, my sister had stage one (did not spread, she went for the full panoply of treatments) and my mom had a lumpectomy and radiation (i think she had DCIS, now that i know the facts).

    My physician immediately sent me to a surgeon, who recommended lumpectomy and radiation. For better or worse, i had a friend who recently had stage 1 and a lumpectomy with radiation. As a result of her radiation she developed a bad lung condition, and the radiation weakened her ribs to the point she broke one just leaning over a chair. Also, i (and my very supportive and researching husband) were dubious of the positive effects of radiation in preventing future incidents. So i told the surgeon i probably was okay with a lumpectomy, but i would not have radiation. His immediate reaction? “Then you need a mastectomy.” What? I asked him for statistics and studies that supported what he was telling me, that (allegedly) DCIS in 50% of cases becomes invasive cancer. He just kept bullying me, with no meaningful support for his statements.

    I continued with my research. I read the studies. I devoured the resources on Donna’s page. I asked for a new surgeon. I asked to meet with an oncologist. I kept reading. I watched Dr. McDougal’s video/interviews on breast cancer (highly recommend, that was a real eye opener!). I brought Donna’s research with me to appointments, and pressed the physicians. The oncologist at first was great, and i felt after talking to him that i did need to have the lumpectomy, and he was “okay” with my not doing radiation albeit not pleased. I met the new surgeon, and liked him.

    So i gear up for the lumpectomy, which alone sounds like no picnic. They take ANOTHER mammogram day of (i waited about 6 months i think), and tell me “you have more areas of DCIS. Now we recommend a mastectomy or you will be disfigured”. I kept saying “but this isn’t cancer, this makes no sense.” And they kept mansplaining that it WAS cancer and that i was taking my life in my hands if i didn’t do it. I think it was around the moment that the surgeon was telling me that they “replace” the nipple afterword (meaning tattoo something where a nipple used to be) that i thought “hold up.” Every cell in my body was screaming “i don’t have cancer, this is crazy.” I kept asking questions, and at one point the previously very nice oncologist told me, in essence, “you don’t know what you are talking about, just do what we say, or you are risking your life.”

    At that point i got a second opinion on the DCIS diagnosis from a pathologist Donna recommended. That pathologist, who was very nice, confirmed the DCIS and suggested that i visit an oncological surgeon in OC. I realized (duh, he’s a surgeon) that i wasn’t going to get alternatives to surgery there, he could only determine whether i was a candidate for a less disfiguring surgery (which i was not). He also was very kind, so i’m not sorry i went. I learned a lot. The most powerful part was, and why he did this i don’t know, he showed me notebooks full of women who had mastectomies. To show me his work? What to expect? Well that scared the piss out of me. I just sat in his office and cried quietly.

    Then i changed my insurance to PPO, and got myself up to UCSF. So different. No bullying. No mansplaining. The first thing he said was “First off, you do NOT have cancer.” I questioned the various studies, and he walked me through them more honestly. He was very straightforward about what we don’t know about DCIS. And since so few people don’t follow the standard protocol, there aren’t studies on what happens if you don’t follow the protocol. I told him i wanted to do mindful watching and waiting. And he said “our recommendation is not that different from what you’ve heard. But if we did a mastectomy, we would NOT remove the nipple (so that was better and less aggressive) and i also think we could do a lumpectomy in both spots and not deform you (also nice to have an option).” And because my areas were small and not apparently growing quickly, he affirmed my decision to watch and see, so long as i came every six months for an MRI and mammogram. He said that way if it changed, i’d still have an exceptional chance of taking more dramatic action if ii wanted to. He wanted me to take Tamoxifen but i ultimately said no (a friend had a horrifying side effect). After listening carefully to my logic, he supported with my decision. BTW, i’ve stopped having mammograms. I only do the MRIs every 6 months.

    So now i have had my fourth MRI at UCSF, and i’m 4.5 years or so from the initial diagnosis. And i was just told that my DCIS has not grown (which has been true in all 4 MRI). And not only that IT HAS DECREASED!

    Things i did in response to the diagnosis: I read (and highly recommend) Radical Remission. I started using (and taking) Frankincense. I told my acupuncturist and she tailored my treatments to include breast health. I did some reiki sessions. I started drinking tea with Red Clover and Chaga and other healing herbs. I started taking high doses (4 g per day) of Turkey Tail. I started taking ground (grind it yourself, don’t let it get stale) flax seed. I gave up dairy (all but an occasional pad or two of butter). I eat meat only once a quarter, and then organic and ground. I cut the oil in any recipe that called for oil in half, and found recipes that didn’t use oil. I don’t eat fowl, except turkey on Tday. I still eat fish, lots of it raw. We juice tons of veggies, and i drink a green drink every day. We eat lots of organic salads. For a while i used CBD oil with trace elements of THC, but haven’t lately. I resumed meditation, and used Joe Dispenza’s (“You are The Placebo”) meditation. Powerful. I recently started taking Nicotinamide Riboside and C60. I take a ton of supplements, but those are the main ones. I try to exercise at least half an hour every day.

    So who knows what the future brings (although i have my thoughts on it now), but i am so grateful that i listened to my body. I have not been reckless, that was my one rule for myself. I’ve been open minded. And I have every confidence that i can give my body what it needs to heal itself and be well. I don’t judge anyone’s decisions here. I can tell you, it is very hard to go against the establishment. Lots of well meaning people challenged my decision and worried for me. Get educated, read and read and read, and listen to your own body. Happy to answer questions, if there are any

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    • dp4peace says:
      February 19, 2019 at 4:17 pm

      Wow Renee….thank you so much for sharing your experiences…and for all the kind words!! It is such a blessing to witness women becoming educated and empowered and then paying it forward! That is what DCIS 411 is all about!! Could you please share about the grade of DCIS and if it was the same when you had 2nd opinion. Did any of the Drs. recommend further bio-marker testing such as Oncotype Dx DCISionRT. Thanks again and congrats on your wonderful health report! May you be continually blessed 🙂

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      • litlady1 says:
        February 19, 2019 at 4:36 pm

        I had similar experience. Surgeons want to do surgery. I refused all treatment changed diet learned to destresd and follow TTAC (the truth a bout cancer). No fears any more.

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    • Wendy says:
      February 20, 2019 at 2:00 pm

      Renee…I was diagnosed with DCIS in 2014 and it took me over three years to decide what I wanted to do. Thank you for sharing your story and not allowing the mainstream to dictate what was best for you!

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  65. Vickie says:
    September 21, 2022 at 10:49 am

    I’m a 58 year-old I live in north Florida I was diagnosed with DCIS of the left breast in 2016, it was small area but mid to high grade . I decided not to do anything, I stopped drinking soda stopped eating that much sugar , I started researching a lot of natural stuff I started taking turmeric from a good source got my D levels up I don’t eat much meat I started doing frankincense brushing my teeth with it putting it on the roof of my mouth also started doing cannabis oil and cannabis gummies prescribed, I recently had
    A scare in June 2022 woke up with my breast hurting lump with purple mark and underarm hurting. I totally went into a panic went to the emergency room thinking I had IBC kind of lost it for a while ended up on medication. I finally got the nerve to go do another mammogram, which show the same area slightly bigger of the calcifications. They decided to go ahead and do lumpectomy take out two lymph nodes, they did not do another biopsy. After surgery they said the lymph nodes were clear went back in two weeks I could tell the doctor was acting funny, I asked How everything was and she said everything’s great everything’s gone and I asked her about the pathology report and she looked at me and says I don’t think you understand what I’m trying to say there was nothing there there was no DCIS there or anything else. I said thank you Jesus I said I’ve done a lot of natural stuff and I’ve had a alit of people praying for me I don’t really think they want to hear that. She said we can’t really explain it we really don’t know enough about it. She told me that I was going to be the discussion of the meeting of all the doctors . My radiologist still wanted to do maybe some radiation but after she sent off the pathology to double check if I needed it , it came back that I did not need it. They want me to have another mammogram in six months. When I went to the oncologist I said you’ve probably seen this happen before and she says no we don’t see this happen. I believe in healing also believe we are what we eat. But I’m here to say my DCIS went away. I believe they jump the gun sometimes I also believe there’s a lot of natural stuff one can take Life Style changes and prayers. Vickie’s Story.

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    • Donna Pinto says:
      September 21, 2022 at 8:31 pm

      Thank you so much for sharing Vicky. Very sorry you had to go through all that but happy to hear your amazing results. Many blessings for continued good health — body-mind-spirit. Hugs and love, Donna

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