Hysteria & Overtreatment

“There’s a hysteria around breast cancer. The extremism that sometimes comes into play in DCIS treatment decision making is a ‘cultural problem.’ This is not a life-threatening problem.”   –Dr. Anne Partridge, MD, MPH, Dana-Farber Cancer Institute, Boston, Massachusettes
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 “Strong consideration should be given to changing the phrase DCIS to eliminate the ‘anxiety-producing’ term carcinoma.” – Dr. Carmen Allegra, MD, Chief of Hematology and Oncology, Shands Cancer Center, University of Florida
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“The time is now to discuss a change in the approach to DCIS. We should be demanding change.” – Dr. Laura Esserman, MD, MBA, professor of surgery and radiology at UCSF and Director of the Carol Franc Buck Breast Care Center, UCSF
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Above excerpts from, “Take Carcinoma Out of DCIS and Ease Off Treatment,
“Medscape Medical News, January 21, 2010  http://www.medscape.com/viewarticle/715586

 

67 Responses to Hysteria & Overtreatment

  1. Gail says:

    Hi, Donna! Just diagnosed 1.5 months ago with DCIS. Biopsy results: low to intermediate grade, contained. I had a surgical excision 3 weeks ago, and the margin on one side was 1 mm. So I had a second incision last week to enlarge that margin: they’re all now greater than 1 cm., and I’m strongly inclined to leave it at that, with monitoring. I found Dr. Silverstein’s 2010 article on the Van Nuys Prognostic Index (VNPI) indicating that there’s NO significant benefit to adding radiation to this (and found out that if you use it once on a body part, that’s it: you can’t use it again). Also, being post-menopausal, I don’t want to have my small remaining estrogen supply nuked. IYKWIM!

    Now I’m off to read your blog! –Gail

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    • dp4peace says:

      Hi Gail! Thanks for sharing your story. Are your doctors okay with you not doing radiation? Thanks for reading my blog. Please keep in touch! Donna

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      • Gail says:

        I have been working nonstop this week (very tired). The medical onco. said she thought that hormone suppression would be more of emotional than medical benefit in my case (I’m 2 yrs. post-menopausal). In fact, she said that 80% of the women with my DX are NOT using tamoxifen or aromatase inhibitors (the latter is a newer idea for post-meno women; not yet FDA approved for that). Radiology appt. I still need to set up. My BC surgeon said it seemed like a “rational choice” to forego radiation because I have very wide margins: she got 3 centimeters all around. Actually, I wish she’d asked me about that before she started tunneling, because I was just concerned to get 1-cm. margins all around, which the VNPI strongly suggests for non-radiated patients.

        I’ll let you know how it all works out. BTW, don’t we get calcifications from any type of breast tissue injury? If so, how can they distinguish calcifications from the surgery, from calcs from a new bout of DCIS?

        Another question: have you taken the oncotype DX for DCIS? know anything about it? It’s new for DCIS patients (Dec. 2011).

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  2. Tanya says:

    Thank goodness for dcis 411. I have elected to watch and wait after being diagnosed with dcis following a needle biopsy. Just had my six-month mammogram. Results show no development in previous site but the radiologist showed me a speck or\f calcification so the report states a progression of dcis. Since I saw with my own eyes that the area of previous concern is no more and the sonogram shows nothing I continue to watch and wait. Its a lonely situation. I’m glad you started this website. Up to now Dr. Esserman has been my only friend.

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    • dp4peace says:

      Thanks Tanya! I appreciate you sharing your story here as well as the encouragement. Nice to know we are on this path together…and that we are not alone. WE are both very fortunate to have had Dr. Esserman guiding us! Curious as to what else you are doing for risk reduction such as diet, supplements, hormone therapy, etc.? Thanks again! 🙂 Donna

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    • Fran says:

      Hi Tanya,
      I’m also likely to choose a watch and wait approach, but I’m in the process of researching 2nd and 3rd opinions. I’m newly diagnosed, and I met with a surgeon last week, who scared the daylights out of me about why I should get a mammogram as a “pre-emptive strike”, just in case. I’m glad to know there are others out there weighing their options.

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  3. dp4peace says:

    Hi Gail,

    Please see my blog post regarding Oncotype DX for DCIS:
    https://dcis411.com/2012/03/23/great-news-oncotype-dx-test-results/

    Regarding calcifications:

    I had some “indefinite” calcifications from mammogram June 2011, but these did not show up on MRI Sept 2011 and RODEO MRI Jan 2012 — which came back with “no abnormalities.” I decided not to biopsy them when I did partial mast and re-excision (Sept/Oct 2011) for another area which was was deemed BIRADS 5 “highly suspicious” on mammo, yet 4cm away from these “indefinite calcifications.” The highly suspicious area turned out to be RESIDUAL low grade DCIS/atypia. Two surgeons mistakenly called it a recurrence, while Dr. Lagios called it RESIDUAL as I had left two positive margins from surgery Jan 2010…so this indicates to me that while there may be some abnormal cells, the biology of the cells have remained the same low grade/atypia cells over a period of 1.5 years.

    There is so much we can do NATURALLY to inhibit cancer growth and I am excited to be learning from this phenomenal book: “Herbal Medicine, Healing & Cancer” by Donald Yance. This is a MUST READ!! On page 117, he talks about “herbs that can alter the action of hormonal receptor-type cancers. He lists: saw palmetto and nettle root extract. “There are so many natural ways to inhibit cancer growth by hormonal modulation, for example, with flax seeds,soy foods, calcium D-glucarate and the many herbs mentioned throughout this book.” (p.329)

    here is info on calcifications:

    Breast Calcifications: What Are They?:

    Calcifications are one of the findings that can be seen on your mammogram. These are very small bits of calcium can appear within the soft tissue of your breast. Calcifications are not breast cancer. These aren’t always a sign of breast cancer. Sometimes calcifications are an indication of a precancerous condition. They appear as white dots on your mammogram.
    Calcifications are divided into two kinds:

    Macrocalcifications are bigger bits of calcium, and are not usually linked to breast cancer.

    Microcalcifications are quite tiny bits of calcium, and may show up in clusters, or in patterns (like circles or lines) and are associated with extra cell activity in breast tissue. Usually the extra cell growth is not cancerous, but sometimes tight clusters of microcalcifications can indicate early breast cancer. Scattered microcalcifications are usually a sign of benign breast tissue.
    What happens next, if you have Microcalcifications?:

    If your mammogram shows microcalcifications in tight clusters, your doctor or radiologist may recommend that you have a diagnostic mammogram, an ultrasound, or a biopsy.
    If you have a couple of microcalcifications that look questionable, you may be asked to come back in six months for a comparative mammogram. That will help the doctors see if any changes are happening.
    It’s good to do these follow-up exams to make sure that you get the best information on your health.

    Some benign causes will make calcifications show up on a mammogram:

    old injury to breast tissue, natural wear and tear
    mastitis, or inflammation caused by a breast infection
    calcium collected inside a dilated milk duct
    calcium mixed with fluid in a benign breast cyst
    powders, ointments or deodorants deposit calcium on the skin
    radiation treatment for breast cancer
    calcification in the arteries within your breast
    calcifications in a fibroadenoma (benign growth)
    Where and How Often Do Calcifications Appear?:

    macrocalcifications show up in about 50 percent of women over 50, and 10 percent of women under 50 years of age
    macrocalcifications are usually not worrisome and won’t require a biopsy
    80 percent of microcalcifications are benign
    microcalcifications can help detect ductal carcinoma in situ (DCIS)

    source: http://breastcancer.about.com/od/mammograms/p/calcifications.htm

    🙂 Donna

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    • Gail says:

      Thanks for the information, Donna! very clear, and helpful. Like everything else I’m finding out about DCIS, it sounds like most of what they find is, as my medical oncologist called it, “nonsense.” That’s her word for DCIS too, BTW: “all this Nonsense. Yes, it’s scary and the surgery is painful, but it’s just nonsense, you know?” (Brahmin Indian lady). She said 80% of her DCIS patients are NOT on tamoxifen, and those who are, are doing it more for emotional than medical reasons. IOW, people with low risk-tolerance. Because the difference is “quite tiny.” Especially for us post-menopausal gals. Well, at least I finally have one reason to be glad of being past “the change”!

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    • Gail says:

      Hi, Donna: There’s a URL for the radiation center I discussed in the post below; don’t know if you want to keep it or not. Ciao, Gail

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  4. Gail says:

    These people are unbelievable. I just went to see the radiologist, in a Very Expensive, fancy-pants facility near Wall Street, this afternoon. We had a two-hour cage match over whether I needed radiation for my grade 4-5 ductal carcinoma in situ (DCIS). Which is contained, non-invasive, and considered by many oncologists to be pre-cancerous, or even non-cancerous (the thinking in the field is evolving). (I have 3-centimeter, yes centimeter, margins all around)

    For myself also, to remember it: this is what the radiologist (Dr. S.) said.

    Her argument in favor of radiation went like this: “We treat DCIS just like we treat invasive cancers.” [HUNH? no one else says so] “Because it’s the same decision: you’re trying to prevent recurrence down the line.”

    My response: “I’d rather save that bullet for a DANGEROUS, invasive Cancer, not this pre-cancerous condition.” (Once you use radiation on a body part, you can never use it on that body part again.)

    Her answer: “Your logic is flawed.” [er, tactical error, girlfriend! my logic is impeccable] “As doctors, [note the appeal to Authority] WE say that we will do anything we can to reduce the chances of recurrence.”

    Me: But most recurrence is just more DCIS.

    Her: No, Half of it is invasive.

    Me: Not according to what I read, or that article you just showed me. And the Van Nuys Prognostic Index…(VNPI)

    Her: No one uses THAT anymore [lie; both docs I saw previously did refer to it and treated it as the current thinking in the field]

    Me: I would rather save the radiation bullet for an actual, you know, CANCER.

    Her: That doesn’t make any sense: If you had invasive Breast Cancer…

    Me: But I DON’T have invasive BC, I have DCIS! That’s a very different case!

    Her: It’s not different: the goal of treatment is the same! [see the flaw in HER logic? you could drive a Mack truck through it]

    Me: So you’re saying you treat DCIS just like you treat INVASIVE breast cancer. There’s no difference in your mind.

    Her: No, I’m not saying that [actually, she just DID], I’m saying that …your logic is flawed. What would it be like if someone had invasive BC and came in and said “I want to save the radiation bullet for a later, worse occurrence.”

    Me: I don’t HAVE invasive BC: if I did, I would be on the radiation bandwagon. They’re two different scenarios.

    [We went around that bush about fifteen times. So I tried another tack.]

    Me: Okay, say I did have radiation — that would mean that, if it came back as an invasive early-stage breast cancer, and you just said there’s still a 2.5% chance it WOULD (as opposed to a 5.5% one), then I would have to have a mastectomy at that point because radiation wouldn’t be an option.

    Her: That’s right. [Wow; like it was nothing.]

    Me: THAT’s what I’m getting at — there are downsides to this. [She responded by again saying my “logic” was flawed because I didn’t apparently understand that the goal was to reduce the chance of recurrence.]

    Me: So what ARE the downsides to this radiation? Anything?

    She proceeds to make light of the radiation side effects, which include a slight increase of a SARCOMA (death sentence, unlike DCIS!), then claimed that the only patients who got invasive cancer elsewhere from the radiation beams were those whose docs used a “wedge,” which apparently bounced radiation into other areas of the body. And said “nobody uses the wedge any more; if I heard you were seeing a doctor who used that, I’d tell you to run.”

    I asked about blisters, skin damage, heart and lung damage, ribs cracking, and so on. She said “No one gets blisters,” but later said “your skin might peel in your armpits and under your breast.” Heart? well, yeah, there’s a chance you might get cardio damage, but she dismissed that as “less than the odds you’d get it on the street.” This can’t be right, because if it’s true, it would be reported in the literature as a PROTECTIVE effect. Lung? people end up with permanent lung damage but she denied that. She said something toward the end of the “Cage Match” about ribs, very much in passing, saying “you wouldn’t have to worry about ribs cracking” in the Future if yadda yadda yadda… Oh, yeah, if partial-breast irradiation becomes the standard of care.

    She really weaseled around when I tried to pin her on the percentages. The Van Nuys study indicated that I (with my score of 4 or 5 on the VNPI) would have only a 5.4% chance of ANY recurrence: most of which would be more DCIS. Radiation knocks only 2.9% off of that total. She pulled out a new test, the Oncotype DX [registered trademark, just released in Dec. 2011, and big-money], and an article that had much higher projected recurrence rates for everything. ???

    She slammed the VNPI as “not a randomized, controlled trial,” but the confounding factors she mentioned were irrelevant to the disease: “the patients weren’t followed up in the same way, they had different treatments,” etc. Meaning, I guess, that having radiation at facility A is a bit different from having it at facility B. Because the Van Nuys folks took into account: patient age, grade of tumor, size, margin width after surgery, and whether the women had radiation or not. I’m sure there are other factors in play, but they did follow these women over 12 years.

    Then I made her admit that the Oncotype DX wasn’t based on randomized, controlled trials either. So? “you got bettah, sistah, or are you just yankin’ my chain?” [didn’t say that, but I sure thought it.]

    I asked, “What, in your mind, would be the problem with just waiting and monitoring it? Dr. Ma says I should have a mammo on the left every six months for the next five years.”

    “Well, there’s a chance of getting a cancer from the mammograms,” she said and I broke in, “But the radiation treatment is MUCH HIGHER radiation, and therefore a much greater chance.” She smiled and half-shrugged a concession. Jerk.

    Did you know that your chance — those of you who’ve never had a problem — of getting BC in the next ten years is one percent per year? 10% in ten years? We’re talking nonsense here….just like Dr. G. said.

    I finally wrestled with this woman until I got her shoulder blade on the mat, and pinned her: She finally said, and I quote, “In your case, the benefit of radiation would be very small.”

    Man, they must really need the money. There was only ONE other patient there the whole 3 hours I was there, and it’s a big office. I’ll lay you odds that that radiation center will sink like a rock within five years. (See fancy place here: http://www.thefarbercenter.com/amenities.php ) Also, the clerks were TOO eager to be friendly: it was like walking into a Scientology office! I mean, really. Showering me with compliments, calling me by name every two minutes, running to fetch me coffee or whatever I wanted, and so on. They also had a creepy “internist,” a guy about my age who looked like a racetrack tout and was wearing a slightly baggy business suit. And I needed to see him why? The nurse had already taken my blood pressure.

    What is it about that, anyway? These docs have a positive fetish about your damn blood pressure, but I never saw any of them DO anything with the information!

    As I got my things together to leave, and went to the front desk (they didn’t ask for a copay and I didn’t offer), the clerk said eagerly, “So what is the plan from here?” I said, “The plan is to wait and monitor the situation.” The doctor said, after the prolonged wrestling match, “I’m comfortable with that. That’s reasonable.”

    Blast these people. I mean, really.

    Below, the quotes from the VNPI study, 2010:
    “Current recommendations are as follows:

    Excision alone for those who score 4 or 5 (me), or 6.

    Excision plus radiation therapy for those who score 7, 8, or 9.

    Mastectomy for those who scored 10, 11, or 12.”

    Silverstein VNPI followup, 2010:

    “Figure 1, A shows 320 patients with scores of 4, 5, or 6 analyzed by treatment (excision alone vs excision plus radiation therapy). The local recurrence rate at 12 years for those who received radiation therapy was 2.5%. For those treated with excision alone, it was 5.4% (P = NS). When analyzed by individual score, those who scored 4, 5, or 6, regardless of treatment (excision alone or excision plus radiation therapy), had a local recurrence rate of 6% or less at 12 years.

    With almost three times as many patients as originally published, the USC/VNPI can be more finely tuned to aid in the treatment decision-making process. To achieve a local recurrence rate of less than 20% at 12 years, these data support excision alone for all patients scoring 4, 5, or 6 and patients who score 7 but have margin widths ≥3 mm. [That’s another thing: My margins are 30 mm.]

    Excision plus radiation therapy achieves the less than 20% local recurrence requirement at 12 years for patients who score 7 and have margins ❤ mm, patients who score 8 and have margins ≥3 mm, and for patients who score 9 and have margins ≥5 mm."

    http://intl-jncimonographs.oxfordjournals.org/content/2010/41/193.full

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  5. dp4peace says:

    Hi Gail,

    Loved your post!! Thanks so much for sharing your experience in detail! I wish more women would do this…we can learn so much from each other. Plus it is always nice to know we are not alone with all the “nonsense” involved with a DCIS diagnosis and the way the docs treat us. Good for you for doing your homework….this is the only way they can not scare us into extreme treatments that make no sense! Keep up your strong, positive and healthy attitude! Donna

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  6. paulagloria says:

    I couldn;t find the facebook link? rabbitholecentral@earthlink.net

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  7. Marimar says:

    Does anybody have High Grade DCIS and/or DCIS in several areas? Having High Grade totally changes everything and I want to speak with other women who have HIgh Grade DCIS. Thank you and good luck/white light to all of you. Thanks for creating this page!

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  8. Pamala says:

    Hello-Even though my doctor told me not to rely on the internet for answers, I do want to know what other women are saying. I was diagnosed 4 days ago with DCIS precancerous cells. My head is still spinning from the info I recieve from my doctor, family and friends. 11 months ago I had a colon recection because of a precancer lesion–so this has not been a fun year. But after that experience I realized how my body reacts to medications and you could say I am the poster child for side effects. So if I decide on a lumpectomy but no radiation and NO tamoxifen, what kind of reaction will I get from the medical community? Have others made this decision or is a mastecomy a better choice? I feel like I am in a medical jail and if I don’t make the correct decision according to the medical community I might not get out. I am 44 years old, have a rather healthy diet. I would appreciate input from those of who lived it.

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    • Gail says:

      Hi, Pamela —
      DCIS survivor here. Got diagnosed in the spring. The upshot of my research was that if you go by the Van Nuys Prognostic Index (VNPI), you & your doctor can better evaluate what type of DCIS you have. I had the type that allowed me to have a lumpectomy (you will need margins of 1 centimeter or better all around the lesion), and no hormone or radiation treatment.
      The medical oncologist said “If you have DCIS, the surgery IS the treatment. Any further activity is prophylactic [preventive].” She said women with my type of DCIS who were taking hormone treatment were doing it “for emotional reasons.”
      Radiologist really strong-armed me to take the radiation, but I finally got her to admit that, “in your case, the benefit would be very small.” ONe thing you need to know: once they irradiate a breast, they can NEVER do it again. So if you get unlucky and have a recurrence, or invasive cancer, you have one option: mastectomy. I decided that was crazy (shooting that bullet at DCIS) and decided to save the option for possible bad luck later.
      YMMV, but keep your cool, look up the VNPI, and good luck!
      –Gail

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  9. Geraldine Wawrzynski says:

    My 38 yr old nice, Lisa was recently diagnosed with DCIS. She went to City of Hope and the doctor told her she has 2 tumors 7mm, and 2mm in her right breast. Because she is so tiny and doesn’t have any breast fat, the doctor recommended a double mastectomy. Lisa has scoliosis and has a metal rod in her back so she can not have an MRI to determine how invasive her cancer is. My brother Frank, Lisa’s father knows your friend Laura Bucholtz and she referred you to him. I you don’t mind I will call you and explain further details. Is there any diet that you feel my niece should be on etc? Thank you, Geraldine

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  10. dp4peace says:

    Hi Geraldine,
    Sorry to hear about your niece. I’m happy to talk with you or her any time. Please email me: dp4peace@yahoo.com and I can give you my #. I would recommend she read AntiCancer: A New Way of Life by David Servan-Schreiber….it has great info about diet as well as understanding cancer. Also see my “health tips” on this site. Most important thing is to get a 2nd opinion — both pathology and surgical. This can change things and it’s important when making these very major treatment decisions. There is no rush with DCIS….it is not life-threatening and one has time for 2nd opinions. Important not to panic and make decisions out of fear. The medical establishment doesn’t always serve us well when it comes to the emotional side of DCIS. A good support system and a naturopathic understanding/perspective is something I highly value. Also DCIS is never invasive. If there is an invasive component, then it’s no longer considered pure DCIS. Treatment would then be different. Please see the resources section here and have Lisa look into 2nd opinion from Dr. Lagios. He is a 30 year expert pathologist specializing in DCIS. She can have her slides sent to him for evaluation. This is highly recommended! Hope I have helped. Contact me with any questions. ~ Donna

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  11. Joan Merwyn says:

    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..

    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 considered 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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  12. Joan Merwyn says:

    Adding to my post above: A friend who is a nurse just read my pathology report it DOES have the result of the Muscinus cancer test:
    “The stains do not provide any convincing evidence of an invasive component to this biopsy.”
    Is referring to the mucus test.
    Also, the hospital in Rhode Island that I’m dealing with is NOT RI Hospital. I will leave the place unnamed, for now.

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    • Donna Pinto says:

      HI Joan,
      Thanks for sharing everything. I would suggest getting a second pathological opinion from Dr. Lagios and as Gail said learning your VNPI score. This may or may not affect your treatment decision, but it will give you a lot more insight into exactly what you are dealing with. Dr. Lagios talks with you for 45 minutes and I found a great deal of comfort and peace of mind from his evaluation (even though my score was an 8). Not sure if he would need a bigger sample or if he can use the core needle biopsy sample. I would call or email him and ask. I would also ask your surgeon if you can do an MRI prior to surgery as well as an oncotype test. I have a blog post about it under “blog.” My core needle biopsy showed only ADH. Had I known then what I know now, I may not have gone on to do the excisional biopsy (lumpectomy) so quickly. I knew nothing at the time and blindly followed my Dr’s suggestion for getting a bigger sample. The pathology from the lumpectomy showed 2.5mm DCIS (tiny) yet this surgery left 2 positive margins. This created another dilemma and more decisions. As I describe in “Donna’s Journey,” I waited a month, did a major detox and then had an MRI — which showed NOTHING. So I chose not to do another surgery and radiation was just not making any sense, despite the HARD SELL by my surgeon and radiation oncologist. No regrets.

      I certainly do not want to influence anyone to do or not do any treatment. I can only share my story. And I am forever grateful for others like Sandie Walters who shared her “off the beaten path” story on her website “DCIS without Rads” and made me feel like I was not alone. Support helps!

      Regarding sentinel node biopsy, I just found this article which states: “As DCIS is, by definition, confined, sentinel node biopsy is rarely necessary.” I also found this fascinating: “At MD Anderson, intraoperative analysis is provided to the surgeon by both the pathologist and the radiologist. Removed tissues—both en bloc and sliced specimens—are examined by the pathologist and also imaged intraoperatively to determine whether an adequate tumor-free margin has been achieved”: http://www2.mdanderson.org/depts/oncolog/articles/10/1-jan/1-10-compass.html

      Regarding recovery after surgery: I had 3 lumpectomies. The first two were 1.5 years apart. Recovery was quick and easy for both. I was hiking up a mountain within a day or two. The re-excision one week following the 2nd surgery was a lot tougher. I had not needed any pain meds for the first two surgeries, but I experienced quite a bit of pain following the re-excision and it took longer to recover. Still, I was back walking/hiking for 2 hours within a week. Important to keep your immune system strong prior to surgery. Here is an article from Dr. Weil: http://www.drweil.com/drw/u/QAA400331/Vitamin-C-for-Surgery.html

      Here is another good article. I have learned a lot from Donnie Yance: http://www.naturahealthproducts.com/media/mediaviewer.cfm?mediaid=958

      I feel for you in making these tough decisions. So important to do whatever will bring you the most peace of mind — no matter what any friend, Dr. or loved one says. We all have different thresholds for risk tolerance. Best to assess your true risk and weigh the harms of any treatment. Do all that you can to keep yourself healthy and stress free. Peace is possible even with a crazy, confusing diagnosis of DCIS. Keep us all posted on your decisions. Sending you much love and light. Donna

      Like

  13. Gail says:

    I had a diagnosis of DCIS, left breast: I used the Van Nuys Prognostic Index (you can find this online) to get my VNPI “score,” and decided to have a lumpectomy without radiation or chemo/tamoxifin followup. I did go see a medical oncologist, who said 75% of her DCIS patients don’t have tamox.; the remainder, she said, do it “for emotional reasons.” The radiologist, at the FArber Center, practically broke my arm twisting it to get me to agree to a course of radiation, but she has a huge overhead with a fancy, overstaffed office in downtown Manhattan. I had already found out that you CAN’T use radiation a second time on the same body part — so if you develop INVASIVE breast cancer later, it’s automatic that you have to have a mastectomy! (She actually admitted that when pressed.) I said I’ll save that bullet for later, should I get unlucky again.

    Bottom line, I would strongly urge you to get your VNPI score, and have your doctor tell you what it is. The Van Nuys study had longitudinal results of a large patient population, and you can get a pretty good idea of the odds from that. If you have a lumpectomy, make sure that the doctor gets 1-centimeter margins all around the area of concern.

    Like

  14. Gaylyn Bicking says:

    I was diagnosed with DCIS in November. I had a lumpectomy last week. My recovery has been very smooth with little pain. The first surgeon I went to said that I needed a mastectomy. I received this news on a Friday night. My surgery was scheduled for Monday morning. Needless to say I decided to get a 2nd opinion and I’m glad I did. I haven’t yet seen the pathology report and am trying to decide if I should take the recommended radiation. I live in MN and wonder if there are regional differences in treatment. Does anyone know?

    Like

  15. Gail says:

    WOW. Mastectomy for something that many docs say isn’t even cancer??? So glad you got a second opinion! My radiologist, over 20 years of experience, based in Manhattan, said when she diagnosed my DCIS (note that “in situ” means it’s NOT invasive), that “This is nothing to be scared of. You will have a lumpectomy and you will be fine — you don’t even need chemo, and for sure no radiation!” She was very emphatic about it.
    Do please check out the Van Nuys Prognostic Index information here: it was a large study conducted to determine what treatment should be used in DCIS cases. I found it a godsend, actually, as it allowed me to feel more comfortable in choosing less drastic treatment (your mileage may vary, but it’s good to have this study to look at): http://intl-jncimonographs.oxfordjournals.org/content/2010/41/193.full

    Like

    • dp4peace says:

      Thanks Gail. We need more input like yours!

      Like

    • Fran says:

      Gail, do you mind sharing the name of your radiologist in Manhattan? I am currently in pursuit of 2nd and 3rd opinions. Thank you!

      Like

      • Gail says:

        Susan Goldfine was the radiologist. The other docs were good also. They’re at Central Park Women’s Imaging in Manhattan: http://www.nyrp.com/central_park_womens_imaging.html

        Good luck! Dr. Goldfine was brusque but reassuring (not a great bedside manner but she’s the one who told me that I didn’t need radiation). The other docs (can’t remember their names) had a softer manner. Every case is different, and it comes down to one’s risk tolerance among other things.

        Also, I went to see an Indian medical oncologist, a very amusing lady of a certain age, who reassuringly dismissed DCIS as “all this nonsense!” She said most of her DCIS patients were not on hormone-suppression therapy, and the ones who were, did it for emotional reasons (I took that to mean that they were so scared of getting a recurrence that they’d do anything.)

        Most cases of DCIS, btw, are never even detected and never amount to anything, which is also comforting to know. (They find all kinds of stuff in people when they do autopsies: “Oh, look! she had [this condition] too!”) That means, if we knew for a fact how many people had it, the odds of DCIS developing into invasive disease would be even lower.

        Like

    • Milly says:

      Hi Gail,
      Who was your surgeon? I’m in the New York area.

      Milly

      Like

  16. dp4peace says:

    Yes, good study to look it, but if I went by this study alone I would fall into the category of 6 weeks of daily radiation or mastectomy. Even with the statistics and VNPI recommendations, my choice is still NO RADIATION and NO MASTECTOMY.

    Like

    • Gail says:

      I hear you. When I ran the numbers for my own case, I found out that, first, Anyone’s risk (i.e., people who’ve always had clean mammograms) of getting breast cancer in the next ten years is, IIRC, 12% — so subtract that 12% from the 24%, and you are dealing with an additional 12% risk. Do the math, and that works out to 1.2% annually. When you actually sift all the percentages (I’m going on memory about what they are, but you get the idea), then in absolute terms, I would say that for many women the level will be acceptable. It’s a very personal decision; as long as we have the power to make personal decisions about our treatment.
      I should mention, I’ve read that a recent study said that taking a baby aspirin daily cuts our risk of getting a solid tumor by 30%. I’ve added that to my daily regimen. 😉 (No, I don’t remember where I read it, but it was one of the major medical sites.) They said they’d need to do additional studies, but a baby aspirin is so mild, I figured what the heck: I’ll give it a shot. Ciao, everyone.

      Like

    • MariaNYC says:

      HI Everyone I’m new to the site. I’m reading everything I can before second meeting with a potential alternative surgical oncologist but he was not so great during the first meeting. I agree with Donna. MY VNPI Score was 8 too and I was shocked that Lagios, who I thought might be alternative, recommended Radiation which is very Toxic. He did recommend Suzanne Klimberg of Univ. of Arkansas who is using Radio Frequency Oblation http://doctors.uamshealth.com/profile/?pid=950. I am supposed to call her tomorrow. I am still not convinced I need surgery. Hugs, Maria

      Like

  17. Gail says:

    Oh, addendum: the recommendations by doctors are always leaning towards doing as much as possible, rather than doing the minimum. My surgeon said, “I don’t want you to be the one case that is unlucky.” I said, neither do I: but I’m my entire “patient population,” and it’s my breast, my life. They really do want to make sure you survive; they’re also justifiably concerned about career-killing lawsuits.

    Like

  18. Fran says:

    Thank you, Gail. While I know I need to take this new DCIS diagnosis seriously, and get 2nd and 3rd opinions, I am also floored by all the hysteria around it – specifically, what I think is a knee jerk reaction by surgeons when they don’t have all the answers.

    I’m scared, but I also believe in my gut that there’s nothing invasive happening in my body. I pray I’m not proved wrong! This DCIS thing came out of the blue, after years of completely normal mammo’s. Maybe turning 52 and entering pre-menopause has something to do with this… Thank you for being out there! Is the Indian lady accepting new patients?

    Like

    • Gail says:

      Dr. Anupama Goel: http://www.stlukeshospitalnyc.org/PhysicianProfile.aspx?phys_id=11458

      I would assume so, haven’t needed to go back to her (and won’t, God willing!). Best of luck.

      Oh, and ductal carcinoma in situ is by definition NOT invasive (“in situ” means that it’s contained within a milk duct). As my radiologist Susan Goldfine said, “If you have to get any breast lesion, This is the one to get!” (i.e., the very very very earliest form, and it usually doesn’t develop into anything more serious).

      Like

      • Fran says:

        Thank you, Gail. I left a message for Dr. Goel, and I’m hoping to hear back. Thank you for creating this Blog!!

        Like

      • Marian says:

        Dear Gail, thank you much for your matter of fact attitude. Your are a fight and you take the F out of the word fear. God bless you.

        Like

  19. Gail says:

    You’re welcome, Fran: but Donna created the blog. Bless her heart.

    Like

  20. Alice Deutsch says:

    Fran, If you’re in NYC, you can also have a consultation with Dr. Silvia Formenti, Chair of the Dept of Oncology Radiology at NYU Langone. I contacted Dr. Laura Esserman from the Athena Breast Health Center at UCSF, asked her for a like-minded colleague in NYC, and was referred to Dr. Formenti.Phone: 212-731-5003.

    Like

  21. dixiesmom says:

    Fran, If you’re in NYC, you can also have consultation with Dr. Silvia Formenti, Chair of the Radiation Oncology Dept at NYU Langone. I contacted Dr. Laura Esserman from the Athena Breast Health Network at UCSF to see if she had any like-minded colleagues in NYC, and she recommended Dr. Formenti. 212-731-5003. She is wonderful, brilliant and will explain the risks and benefits of all possible treatments.

    Like

  22. Fran says:

    Alice, thank you so much. I’m meeting with an oncologist in Stamford, CT next week as a 2nd opinion. Depending on that outcome, I will reach out to Dr. Formenti as well. I, also, have been looking for like-minded colleagues of Dr. Esserman. Thank you!

    Like

  23. Fran says:

    Donna, you mentioned doing a major detox for a month, prior to your next MRI. What did that entail? I do believe in the body’s ability to heal itself when stressers are removed. Would be interested to hear more.

    Like

  24. dp4peace says:

    Hi Fran,
    I have listed everything I did to prepare for a more intense 3 day weekend “liquid only detox” here: https://dcis411.com/health-tips/. For 1 week prior and 1 week after the 3 days, I also did not consume nuts or carbs. I lost a lot of weight (about 10 lbs) for my size! After one month, I gained most of it back just by reintroducing healthy carbs, nuts and fish. I was never hungry — even during the 3-day liquid only detox….my friend/nutritionist/guru Adriana supported me and two other women and we spent the weekend together sharing stories and meditating. Adriana made delicious teas, tonics, raw soups and juices. I did not exercise during those 3 days (which is rare for me as I have rarely missed a day of exercise in 30 years!)

    Be sure to read what to ELIMINATE. I only reintroduced some things like organic coffee, dark chocolate and occasional red wine after about a year. I was very strict…and some would say, I still am. Here is what I still do/eat most days:https://dcis411.com/2013/04/16/donnas-daily-rx/

    Here is my blog post on the importance of detoxification as a first step in healing:
    https://dcis411.com/2013/06/07/detox-detox-detox/

    And finally, Adriana has taught me…. all the greens and the best diet will do you little good if you don’t eliminate all the other toxic stress (emotions, environmental, chemicals, people) in your life,

    Detoxification is purification on all levels. This is where true peace, love and health reside. I wish this for you and everyone who stumbles upon this blog!
    Much love and blessings on your journey! 🙂 Donna

    Like

  25. Fran says:

    That’s so nice of you to take the time to do that. Thank you! I believe in detoxification, and need to learn much more about it. Two doctors that I visited recommended two very different treatment plans, so I’m going to get a 3rd — and hopefully final — opinion at Sloane Kettering in May. My HOPE is that if the DCIS doesn’t regress on its own, it can be managed non-surgically, or through a hormone treatment plan and detoxed lifestyle.
    It’s not that I’m not taking the diagnosis seriously. But I strongly believe that so many otherwise healthy women are getting caught in this diagnosis “net”, and hurried along to the OR without time to reflect or look at individual risk factors.
    Worse, when women on the blogs mention the option of watchful surveillance or neoadjuvant therapy alone, they’re almost vilified by the other women on there. Not sure why the hostility runs so deep…

    Like

  26. dp4peace says:

    I agree. I experienced a lot of hostility with my views so I stopped partaking in those message boards and spent my time focused on the highest, purest, healthiest way of living. From my perspective it seems many women identify with “their” DCIS and claim it as “cancer” and regurgitate the worst case scenario situations — making any alternative to the standards seem foolish and life-threatening. This really isn’t their fault….it is what is being marketed through the conventional “standard of care” medical system. There are two very opposing viewpoints on DCIS — and there is just very little support for the minority that believes in less treatment, watchful waiting, active surveillance, etc. Things are changing though…..and more and more are gravitating towards this site and http://www.dcisredefined.org looking for help, guidance and support. Keep in touch! Donna

    Like

  27. Fran says:

    You’ve been one of the bright spots in this otherwise terrifying DCIS journey, Donna. I will definitely keep in touch with you, and thank you for being out there!

    Like

  28. Chris says:

    Hello! I found your website during my early days of DCIS research. I was diagnosed at the end of April with high grade DCIS. After meeting with 3 surgeons and countless hours of research, I decided conventional medicine was not the right path for me. I have been working with an ND since early July. I have changed my diet, added new supplements, meditation, stress-reduction, and IV therapy (high dose Vit-C and artemesian – spelling?). I am doing thermography at 3 month intervals and will redo my MRI at the 6 month mark. I am wondering if there is anyone else with high grade DCIS that has opted not to get surgery.

    Like

    • Chris says:

      Hello Donna –
      I have not had any responses to my question so I wonder if you might know of someone or if you have any thoughts or recommendations? I would love to connect with others in a similar situation. Thank you!

      Like

      • Donna says:

        Hi Chris, there is a woman named Angela Holden-Davies (also high grade DCIS — no conventionalk treatment — and she is doing all natural and has shrunk the size of DCIS). She is a wealth of information and has a facebook group: THE ALTERNATIVE DCIS BREAST CANCER GROUP https://www.facebook.com/groups/548606558617827/
        I would suggest contacting her and finding support by joining her FB group

        Like

      • MariaNYC says:

        HI Chris, I’m Maria, pouring over the DCIS 411 pages as I prepare to have all my alternative knowledge for tomorrow’s second meeting with a “alternative surgical oncologist”. I see you posted here and I’m seeking to do nothing with High Grade ER+ and PR+ 9 cm area Left Breast. I wonder where you are in your journey 2 years later. Hope to hear from you! Maria

        Like

  29. Marie says:

    Hi Donna, I have been following your site since being diagnosed with DCIS intermediate grade since September 2012. I was so confused reading different opinions and approaches, so I placed my confidence in my surgeon, onc, and rad onc. When the surgery was set, and treatment plan in place I felt uneasy! While I knew for sure I would have a lumpectomy, the thought of left breast radiation and tamoxifen seemed quite aggressive. After much searching, I found your blog. It seemed to confirm my thoughts on extreme measures taken for DCIS. After having two surgeries, with 1cm margins, I went to see my rad onc. ( whom I love and respect) and he agreed that given my age, 56 and the fact that it was ER positive with clean margins, I didn’t need radiation. I have also chosen to forgo the tamoxifen at this time. My surgeon did not make me feel I was being unreasonable but suggested I have a yearly MRI. I happily agreed! I feel this was the right decision for me at this time. I just had my 2 yr. Post surgery mammo, and thankfully so far so good. Thank you for your courage and stregnth!

    Like

  30. Donna says:

    Hi Marie,

    Thanks for sharing your story and comments. Great to hear your good news! Was the DCIS low grade? I wanted to make sure you saw the info here regarding MRI: http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/ Keep listening to those instincts — they are usually right on! 🙂 Donna

    Like

  31. Rebecca L Smith says:

    Please help. After the typical “suspicious-looking” calcifications on a screening mammogram, the second “diagnostic” mammogram, a core needle biopsy (DCIS nuclear grade II), then two surgical biopsies, the second to get larger healthy tissue margins (the results may as well be in Latin for all the more I can understand them). This resulted in me being told that if I didn’t now have the radiation therapy followed by 5 yrs of Tamoxifen. My only other choice was a full mastectomy! I do not trust these people to truthfully explain things to me. A genetic test was negative. I had not had a mammogram for 9 yrs when this was discovered in March 2014 (for all I know I’d had the condition for yrs). My question is this “what is nuclear grade II and how does that compare to stage zero?” Any information is appreciated. Thank you

    Like

  32. Gail says:

    Dr. Aye Moe Ma.

    Like

  33. Chris says:

    Excellent! Thank you for the info Donna!

    Like

  34. Milly says:

    Hi

    I contacted Dr Formentis office but they told me she sees patients after they have had some kind of surgery. I was diagnosed low grade DCIS in September and am not having immediate surgery if at all. Part of me feels this should be left alone although it is scary that this can become very serious. I went to an oncologist after seeing a breast surgeon who recommended lumpectomy. I told him I didn’t want surgery so he said another choice was to take tamoxifen as a preventative . Has anyone here not had any surgery for DCIS? Most posts I see the women have had the lumpectomies and no further treatment. Has anyone taken the tamoxifen? My oncologist says he has not seen any cases of uterine cancer for it in 15 years of practice. My primary doctor who knows my entire family begged me not to do nothing as she has seen DCIS turn invasive in patients. It’s a dilemma to say the least.

    Like

  35. Donna says:

    Milly,
    Conventional Drs. only know conventional treatment (cut, burn, poison). You will not find support and resources there if you want “alternatives.” Best to seek out an integrative or naturopathic Dr. who can guide you on a non-toxic health and healing path.Angela Holden-Davies has a Facebook group called THE ALTERNATIVE DCIS BREAST CANCER GROUP https://www.facebook.com/groups/548606558617827/permalink/550387398439743/

    Angela has been successful at reducing size of high grade DCIS and not doing any conventional treatment.

    Once you get empowered, the scary feeling goes away! I am not scared despite the scary statistics from oncologists, surgeons and radiologists. Flood your brain and body with healing thoughts, food and actions….and the scary world of cancer fades away. Maybe time to get a new primary Dr also. Yes a dilemma, but we have more choices than what they tell us! Peace, love, light, health and blessings!!!

    Like

  36. Milly says:

    Thank you for the encouragement..i will look into this Facebook group

    Like

  37. Marian says:

    I was diagnosed in October and had the surgery in November. I started tamoxifen and took it for 5weeks until I came upon this site yesterday. Needless to say I will not take it anymore. However, I am having shooting pain in the surgical breast. Has anyone experienced anything pain in the breast and if yes, what is the relieve.

    Like

    • dp4peace says:

      Hi Marian, sorry for the very delayed reply…I just came upon your comment now and wonder how you are doing? I have had shooting pains on and off and thought it was possibly the chip left in my breast. Doctors said no could not be that.Castor oil packs were helpful for me with reducing tenderness and pain. You can find videos on youtube on how to use a castor oil pack. I did it for 1 1x at night for about 30 min daily for 1 month and it made a big difference.

      Like

      • Gail says:

        I had that for a few months after my lumpectomy, but it passed. Nerves get severed in any surgery, and I guess they don’t like it. Been about 2.5 years since it bothered me.

        Like

  38. Vivien says:

    Thank you for sharing your story and educates us about DCIS as I have just started on this life long journey too.

    Like

  39. Gay says:

    If I had to do it over, I would have only had surgery. I chose a more conservative route, because my family had had a lot of drama (a grandchild dying, a mother dying, and much more).

    Like

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