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62 Responses to Contact

  1. kayce says:

    This is beautiful Donna… as are you!!
    Happy HEALTHY new year my sweet friend!
    Much Love,
    K

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  2. Christine says:

    LOVE your blog, Donna! Nevon and I have been making your smoothie 🙂 Yes, I’m trying to get more healthy, it’s going to be a process, but I will get there! Hugs!!

    Christine

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  3. Glenn Pinto says:

    Great job on the web-site. Definitely will help many woman with more information to make sound decisions on. Jeg Elska Dig.

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  4. Sheba says:

    Hi Donna.
    I’m so glad I came across your blog yesterday. I received my news yesterday and I am 11 1/2 weeks pregnant with my second child in the space of a year. I’m not sure if the back to back pregnancies has anything to do with it. I’m meeting the breast surgeon on Wednesday for my first appointment and when she called me with the results she was hinting towards me having a mastectomy since I’m pregnant. I’m only 31yrs old and I’d really prefer a lumpectomy but I can’t have radiation since I’m pregnant. I’m not sure I want to have radiation done anyway. She also said she would be putting me on tamoxifen for 5 years. This DCIS is really new to me and this is the first I’ve heard of it. Any advise would be strongly appreciated.

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    • dp4peace says:

      I would highly recommend Hollie & Patrick Quinn’s book. Here is their story: http://www.huffingtonpost.com/nalini-chilkov/one-womans-story-of-sayin_b_701439.html
      Glad you found my site. So important to take the time to educate yourself and make informed decisions. Do you have your pathology report? What is the grade and size of DCIS? I would also recommend a 2nd opinion from Dr. Lagios. Please see his info under “resources.” Also, feel free to contact me with any questions or just to talk. Wondering how your DCIS was detected? Did you have a mammogram? Sending you much love and light! ~Donna

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  5. Ann Carter says:

    Hi Donna,
    Thank you so much for sharing all your knowledge about all the complexities of a DCIS diagnosis!
    You are the first person I’ve come across that I can relate to, and who is choosing a more watchful approach to DCIS. I had a lumpectomy and then a recision and there was still a positive margin. Mastectomy was recommended. I went for 2nd and 3rd opinions, same thing. At the Mayo Clinic, where I went for the 3rd opinion, they did another mammogram (even though my gut said I shouldn’t do another one) and they found another area of calcifications. They wanted to surgically biopsy it at the same time as trying for one more excision of the other area to get clean margins.
    After lots of research and tuning into my gut feeling about it all, I walked away from this and all the other recommendations. It was extremely empowering for a few weeks, and still is somewhat, but I am finding myself a bit haunted by that new area Mayo found that I have left unexplored. Like your angel gal said, I fear that if I keep screening, they will keep finding stuff! But then again, if that new area is invasive, I want to know! So there’s that. And then just now I was FLOORED by reading what Dr. Esserman told you about not taking progesterone. WTF??? I have been so excited by this possibility, as I am in the process of doing a cycle-long saliva hormone test and my functional medicine doc is quite sure I am high on Estrogen and low on Progesterone and balancing that out is the path I am taking a lot of solace in. To confuse matters more, I am also trying to get pregnant!! I’m 41 and my clock is ticking and to have a baby is my biggest life dream. Got married last summer and want this so much now. Just read Dr Rankin’s book that I saw you recommend (yes, amazing book!) and the one main thing I prescribed myself is to have a baby!!!! I had told myself I wasn’t going to do any more research on DCIS but I was feeling so alone in all this and just knew there had to at least one person out there who wasn’t succumbing to the fear mongering. So thank you for this blog and for sharing your story. I would love love love to hear any thoughts you have on all that I shared here. Did you stop taking progesterone?
    Oh, the details of my DCIS:
    2.8cm, NOT comedo type, grade 2 (intermediate).
    The new area of calcifications Mayo spotted was 3cm.
    I too contacted Dr Esserman and while her writing and speaking on the matter of DCIS felt like a Godsend to me, her reply to my inquiry was very cautioning and not really very supportive. I realize she is an MD who needs to cover her butt paper-trail wise, but it was very disappointing. But she did say she was sure that I had DCIS scattered throughout my breast. So if I do, I don’t feel all that worried about it. But could it be more?
    Also, tamoxifen. Where are you at with that currently?
    THANK YOU!!!!!!!!!!

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    • dp4peace says:

      Hi Ann,

      Sounds like we are in a similar boat. It makes me so happy when women like you find my site! Thank you for reaching out and for sharing your story. It took me a year of searching before finding Sandie Walter’s website “DCIS Without Rads.” It brought me so much solace and great resources. To answer your questions: I tested low progesterone/high estrogen from saliva test so I did progesterone cream for several months, but I decided to stop as I didn’t want to take anything long-term if not necessary. I will check hormones again and if I am out of balance, I will start again. I tested low on DHEA so I am taking 25mg daily. As for tamoxifen, I didn’t consider it for a second. Dr. Esserman is doing clinic trials so of course that is what she is pushing. The surgeon pushes for better margins with more surgery and the radiation oncologist pushes for radiation. I think I have had 7 “western” Dr. opinions and several naturopathic/integrative opinions. I have completely lost faith in our entire medical “health-care” system. It is a “sick-care,” disease-management system and the “standard of SCARE” is criminal. Women are making very aggressive and extreme decisions based on fear of “what if….” I too have another area of calcifications which I chose to NOT biopsy and to leave alone. This area does not show up on RODEO MRI (and I have had 2 clear RODEO MRIs since th calcs showed on a mammogram almost 2 years ago). Dr. Esserman told me the same thing and so did my San Diego surgeon: there is probably more DCIS and if we keep looking for it, we will keep finding it. So, the margins are unlikely to be good. The thing that brings me peace of mind is…it is low/int grade DCIS and my oncotype score came back “low risk” for recurrence AND invasive. A RODEO MRI is the best way to monitor. The docs won’t tell you that because they don’t even know about it! Here’s some info on it: A 2012 study by Dr. Bruce J. Hillman etal showed that, while the false negative rate for whole body MRI has historically averaged 15%, the false negative rate for the RODEO MRI is less than 1%. In other words, if a RODEO MRI finds no cancer, there is only a 1% chance that it missed something, while with whole body MRI there is still a 15% chance cancer was missed. This study also showed that while whole body MRI has been criticized for its high false positive rates, typically between 32 and 41%, RODEO MRI has a very low false positive rate of only 11%. This means if a RODEO MRI finds something suspicious, the chances of an unnecessary biopsy are much lower. With such good numbers, the Aurora RODEO MRI is a highly accurate and useful imaging tool, especially for DCIS. With its 1% false negative rate, it can provide peace of mind as an annual screening device for higher risk patients. Its accurate 3-D mapping can also assist surgeons in providing more tailored excisions and biopsies of DCIS that cannot be seen on a mammogram, while its low 11% false positive rate protects patients from unnecessary biopsies.

      So, if I were you, I would ask your Dr to order a RODEO MRI ( http://www.auroramri.com/locations.php — you have to find the location closest to you), ask for the Oncotype test, and for more peace of mind, possibly have a 2nd pathological opinion from Dr. Lagios. Most importantly, stick with your gut and your functional medical Dr and testing your hormoones! Also, I would highly recommend you read Hollie and Patrick Quinn’s book “You Did What: Saying No to Conventional Cancer Treatment.” Hollie was pregnant at the time of her stage 1 BC diagnosis and went on to have another baby. She is doing great and has been cancer free for about 10 years after refusing chemo and radiation. Excellent and inspiring book. Keep positive, healthy and light! And keep visualizing your healthy baby. Sending you much love and light, Donna

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  6. Ann Carter says:

    Donna,
    Thank you so much for you awesome reply! I am so relieved to have at least ONE other woman to talk to about this who has been there, who GETS it! I just ordered the book by the Quinns, very much looking forward to reading it as inspirational stories like that are super helpful right now. This is all pretty new for me. Diagnosed in April. I wanted to get the Oncotype test but 2 things: my insurance wouldn’t pay for it (they won’t do so unless the stage is a 1 or higher which of course i’m so grateful it’s not!) and my surgeon said they stopped sending out to do that test because it wasn’t validated enough/accurate enough. I thought about getting a 2nd opinion from Dr Lagios but I honestly don’t think I need to. But sometimes I’m scared that not wanting to find out more is a form of denial. I met w the pathologist on my case and talked to her extensively about all this. She wanted to show me the DCIS cells and I said NO THANKS, but please show me some of my healthy cells! Which she did and I have been doing lots of visualizing. She emphasized how good it is that my type was not comedo. She said that whether or not DCIS is comedo is actually more important than the grade it is given. Then at Mayo I was also told my type is not one they would consider aggressive. Amen!

    I searched for the closest Rodeo MRI and it’s 7 hours away! But I would/will totally make a road trip out of it. Thank you so much for the details on why that is so much better than a regular one. Driving to Missouri every 6 months or year is really not a big deal (i’m in Minneapolis)! Thanks also for your take on the hormone issue. I am doing the month long saliva test, have 4 more vials to fill before sending it off to the lab. I am excited to find out the results and get balanced. My functional med Doc says that will totally help me get pregnant too. The DCIS (I am trying not to call it MY dcis!) was estrogen receptor positive and progesterone receptor negative. Everyone agreed that a pregnancy would actually be beneficial, hormone wise! Another Amen! If I am not pregnant this cycle, I’m going to make plans to have that Rodeo MRI before next ovulation. That would help reassure me so much, to know this other area of calcification is nothing to worry about. My husband keeps reminding me that I DID have an MRI in late April that was totally clear except for the one area that they ended up doing surgery for. So that is good. Very good. And more reassurance won’t hurt. But honestly girl, this journey is showing me that sometimes we can’t get full-on reassurance that we are OK, that things will be OK–and this is a very important lesson. To be present, to be grateful, to be aware that yes one day I will die. I don’t like that but of course I know it’s true and it’s good to be facing it a bit more. One of the many gifts of this diagnosis (still wish it hadn’t happened but there it is!)

    I am so incredibly grateful for your site and for this opportunity to be in dialogue w you.
    If you would be willing, I would love it if you emailed me at ann@anncartercoaching.com so we could be in touch via email. If you’d rather we just exchange posts here, that’s fine too. Just know how grateful I am for you!!!

    Warmly,
    Ann

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    • dp4peace says:

      Hi Ann,
      I will email you, but I just want to comment on the oncotype test here.so that others reading this may benefit. The oncotype DX for DCIS is different than the oncotype for BC. Sounds like there may be some confusion. Here is the website: http://www.oncotypedx.com/en-US/Breast/PatientsCaregiversDCIS

      I would call them (Genomic Health) and ask about their “patient assistance” program. They covered my test 100%. You have to qualify based on household income. Also, my insurance initially denied, but then, strangely it got approved months after I had the test. And then I thought I would be responsible for 10% (which would be $400, but I called Genomic Health and they honored their commitment to pay 100%. So it cost me NOTHING and it gave me another important piece of the puzzle and a lot of peace of mind! Insurance companies will often automatically deny requests and unless we provide information, studies and persuasion, they win. This is the same with MRI without mammogram. I was told by my surgeon that I would not get it approved by insurance. Maybe once. Yet, I have proved her wrong!! We truly have to fight for what we need and for what is right!! Studeis show that MRI (especially RODEO MRI) is far better and less harmful than mammograms for monitoring DCIS (recurrence or progression) and we should DEMAND this and get it covered!!

      Good that you are not calling it “MY DCIS.” This is something I am very tuned into. Better to not identify with it in that way. First of all, DCIS is just a bunch of “precancerous” cells. We all have precancerous cells. These cells are harmless within a healthy environment. That’s why building our immune system and keeping the “terrain” of our whole system clean and pure is so vital. It is so common sense. The cancer doctors are playing on FEAR and once we get off that train, the road to long-term health and healing is crystal clear! Another excellent book, which I am re-reading is “Anti-cancer: A New Way of Life.”

      I could never express the gratitude I feel for being directed to the TRUE HEALING PATH and away from the HARMFUL path. When we remove the FEAR, it is all very very clear. Say good-bye to any doctor that is pressuring and fear-mongering. I am so happy to help you Ann find your way to peace and get on with living a healthy, happy life. It is possible!!! Please feel free to email me directly: dp4peace@yahoo.com 🙂 Donna

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  7. Ann Carter says:

    Thank you sooooooooooo much for all this! Just sent you a (long!) email. You are truly a godsend for me, Donna!

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  8. Pam says:

    I had a lumpectomy less than a year ago. I chose to not have radiation, I have a little soreness and pain at times around my cycle. Is this common? I have not had a follow up check up due to many things in my life. Looking for input from those that have gone through it. Thanks!

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  9. Jackie says:

    I am in the middle of the insanity of being diagnosed with DCIS, 2 mammograms, breast biopsy, meeting with the radiologist/oncologist for radiation treatments in the future, the nurse navigator calling to schedule a surgery date. My initial thoughts when I was diagnosed and it was explained to me that it was encapsulated cells that could progress to breast cancer. I was very surprised to find that they had placed titanium markers in my right breast (at the time of biopsy) so that the surgeon could find the area that was affected. I wish they had asked my permission to do so…I can’t believe that those “Markers” can’t migrate with time passing. Anyway I am in the opinion that all of this is so extreme of an undertaking with a “Pre-cancerous” condition of DCIS. I feel, fear drives us to continue to do as suggested by our doctors, I am thinking about not doing the surgery and having another mammogram in 6 months to see if in fact anything has changed from my last one. I have read and read articles on this subject and can’t wrap my head around such an extreme approach to have a lumpectomy at this point. YOU can see I’m still in the middle of the insanity…thanks for your site and your story and all of those whom have shared their stories as well. God Bless you all and here’s to good health and happiness. Take care of you!!

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    • dp4peace says:

      Hi Jackie,
      So glad you are questioning the way DCIS is handled and you are investigating! And glad you found this site!! I created it for women just like YOU!! There is no reason to rush and there are so many reasons to take your time and make sensible choices. You may want to also check out my new website: http://www.dcisredefined.org My friend Sandie and I have done a lot of the homework for you so you can have ALL the current info and resources (in one place) to help you make more informed decisions. By the way, I asked if my surgeon if she could remove the titanium chip that was left in my breast (without my permission). She said it may or may not be removed during the lumpectomy but they do not seek that as a goal, nor would she do it just to do it even during a lumpectomy. Something really is not right about how doctors do not communicate the whole truth about these treatments to patients. We are basically at their mercy….unless we know better…

      So grateful for you sharing your story and perspective. I hope to continue to help support one another through sharing our experiences and insights. Much love and light, Donna

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    • Ann Carter says:

      Dear Jackie,
      I am so glad you are reaching out. I was diagnosed in April and it was such a scary, lonely, hard road. Finding Donna’s site was a godsend. I totally support you in trusting your gut that perhaps what is being recommended is overtreatment. In the end, after two surgeries, I walked away from all the rest of the recommendations (mastectomy & radiation). I felt euphoric upon finally arriving at this decision, but that wore off after a few weeks and I was left w a lot of uncertainty and fear. Fortunately, I’ve worked with it and processed it and am in a MUCH better place and want to commend you for the questioning you’re doing. There are many doctors who support a less extreme approach. I had to dig but I’ve found a few. Keep sharing and know that you are not alone!
      Wishing you so well,
      Ann

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      • dp4peace says:

        Great reply Ann! Glad to hear you are in a much better place with it all. I know the entire field around the treatment and management of DCIS will be changing — it is just a matter of time — and that will make it better for everyone. There is nothing worse than the darn fear…but when you work your way through and you truly find peace, it is from a much deeper place of understanding and empowerment…and that is such a blessing I wish for everyone who goes though this. Thanks for commenting! Be well, 🙂 Donna

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  10. Jackie says:

    Dear Donna and Ann, So sorry you didn’t have more support from others in the same position. I am glad you found Doctors that have similar ideas…less extreme…I have been reading and reading and just feel from all I’ve read that I am willing to continue questioning and seek more opinions. I read an article from a University of Pennsylvania breast surgeon and darn if that isn’t the one I was referred to for a second opinion…I feel blessed…he is also in research and has some ideas about the process. I was researching today if the tract of the needle biopsy could create the DCIS to spread since it was encapsulated, is it still that way?? they went in two different places for the biopsies. All research I have found says they don’t think so but no research has been done on that subject. Thank you both for your well wishes and I hope you are both are feeling good these days! God Bless and Keep the Faith….. Jackie
    PS thanks Donna for the new link and research you have done for all of us!!

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    • dp4peace says:

      H Jackie,
      One thing that I found a lot of solace and reassurance from was when Dr. Lagios told me that no matter what you did with DCIS cells — even if you chopped them up, they could not spread. He said, DCIS needs to go through another molecular change before having this “spreading” capability. (I was worried because I had a positive margin — meaning the DCIS was cut directly through.) I ended up leaving it alone for 1.5 years and then had a mammogram which showed “highly suspicious” so I had to decide the 2nd time around if I would have a needle biopsy or if I would have a surgical biopsy. I chose to forego the needle and just remove the “highly suspicious of malignancy” cells. Even after 1.5 years, the cells had not morphed into high grade or invasive. They were still low-int. grade DCIS. I too have read articles about a needle biopsy potentially having the ability to spread or seed invasive cancer, but not so with DCIS. The concerns over too many biopsies is one of the main reasons I am no longer doing mammograms and have opted for annual RODEO dedicated breast MRI…which I have posted a lot about on this site and my new one. It is far better at picking up high grade or INVASIVE cancer and because Drs like Dr. Esserman are saying we should leave it alone if it doesn’t look like high grade or invasive…this is what we want to monitor and only then (if it looks like high grade DCIS or invasive cancer) should we biopsy. Hopefully things will move more in this direction and we won’t be subjected to over-biopsying and over-worrying! 🙂 Donna

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  11. Jackie says:

    Thanks Donna, Great info and time thoughts. It’s funny when I discuss DCIS with others and my thoughts friends and family look at you like you’re crazy for not having it cut out right away. Amazing how fear drives us to do exactly what is suggested without more research and using one’s own “Gut feeling” about what has been told to us. I am still going to my appointment radiologist/oncologist to hear what happens after a lumpectomy with radiation. I need to hear everything before I make an informed decision. BUT I have to tell you so far with all that I have found out about DCIS I am still under the opinion of waiting and having another mammogram in 6 months from now to see if things have changed for the worse. I have to read more about RODEO MRI’s and diagnosis. I will refer back to your link for more info. Thank You So Much!! Will keep in touch. God Bless …..Jackie

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  12. Tara says:

    Hi, thank you so much for all of this great information! I feel as if I am a step before many of the questions her and I am having a hard time finding the information I need, at the point I am at. I have been living a pretty healthy lifestyle for some time now so any sort of invasive testing makes me stop and think.
    My mother has had DCIS twice, once before 40 and once after, which puts me in the higher risk category. I am currently 39 and due for an exam. I have routinely receive ultrasounds due to my age and dense breasts. This year insurance said mammogram first, it was my first very reluctant mammogram but I did it at a very we’ll respected facility with the best equipment. After the first round, I was called back in for the magnification, luckily same day and time. Afterward the radiologists stated they found calcifications on both breasts but the ones on the left breast were suspicious and birad 4 and of course they wanted me to schedule a biopsy.
    I have 5 children, all without an epidural, I avoid needles:-) so, began my research and lead me here. So far I have canceled the biopsy, I am also not fond of markers being inserted into me. I went and had a thermogram which showed absolutely nothing, happy but still not 100% made a. Decision on my next step. I also feel like the biopsy will puncture any cells which doesn’t seem ideal. The macro calcifications are very small and clustered.
    The information I find is on women who have had the biopsy and are then deciding on which route to go but nothing on those who did nothing when finding the calcifications on the mammogram. Can you point me in a direction or path? The doctors recommended also use pathology reports which I don’t have, so is it better to have the biopsy so they have the pathology reports? I am kind of at a dead end. Thank you for your help!

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  13. Tara says:

    Hi, thank you so much for all of this great information! I feel as if I am a step before many of the questions her and I am having a hard time finding the information I need, at the point I am at. I have been living a pretty healthy lifestyle for some time now so any sort of invasive testing makes me stop and think.
    My mother has had DCIS twice, once before 40 and once after, which puts me in the higher risk category. I am currently 39 and due for an exam. I have routinely receive ultrasounds due to my age and dense breasts. This year insurance said mammogram first, it was my first very reluctant mammogram but I did it at a very we’ll respected facility with the best equipment. After the first round, I was called back in for the magnification, luckily same day and time. Afterward the radiologists stated they found calcifications on both breasts but the ones on the left breast were suspicious and birad 4 and of course they wanted me to schedule a biopsy.
    I have 5 children, all without an epidural, I avoid needles:-) so, began my research and lead me here. So far I have canceled the biopsy, I am also not fond of markers being inserted into me. I went and had a thermogram which showed absolutely nothing, happy but still not 100% made a. Decision on my next step. I also feel like the biopsy will puncture any cells which doesn’t seem ideal. The macro calcifications are very small and clustered.
    The information I find is on women who have had the biopsy and are then deciding on which route to go but nothing on those who did nothing when finding the calcifications on the mammogram. Can you point me in a direction or path? The doctors recommended also use pathology reports which I don’t have, so is it better to have the biopsy so they have the pathology reports? I am kind of at a dead end. Thank you for your help!

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    • Tara says:

      Sorry they are micro calcifications!

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    • dp4peace says:

      Hi Tara,
      I was in your shoes twice. The first time in Oct 2009, I was clueless and I had the biopsy without questioning or researching. That led to diagnosis of ADH and the wide excision biopsy (lumpectomy really) which found DCIS. I chose not to have another re-excision at that time and left the two positive margins with DCIS. Nearly two years later, I was faced with the same dilemma. Birads 5 on mammogram. This time I was more hesitant, more informed and more discerning regarding doing a biopsy. I took the summer in Europe to think about what I wanted to do and to do more research. I requested an MRI. This was rated Birads 4. I knew there was still DCIS there as I left the two positive margins. Although I did not think it had become higher grade or invasive, there was no way to know for sure unless the tissue was removed and examined by a pathologist. I chose to have it surgically removed and skipped the needle biopsy this time. This was against protocol, but I just knew a needle biopsy would lead to surgery anyway. Made no sense for me to do a needle biopsy. This surgery (Oct 2011) left a positive margin again! So now what? I went ahead and had the surgeon do another re-excision to get clean margins and still, the surgery left a close margin. This is where I stopped and I have done nothing more — other than annual Aurora RODEO MRI. I did not mention that I also had another cluster of calcifications in a different area of the same breast that was “indeterminate.” I chose not to biopsy this other area of calcifications — and I am doing “active surveillance” with Aurora RODEO MRI. Here is info: http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/

      These are not easy decisions and I commend you for taking the time to THINK and gather information before having an invasive procedure like a biopsy. They make it seem like it is nothing, but it is pretty invasive and they don’t even inform you that they will place a titanium chip permanently!

      I believe Aurora RODEO MRI is the best way to monitor if you don’t want to biopsy and want to know if anything looks like high grade DCIS or invasive cancer. Was your mom’s DCIS low or high grade? What treatment did she do?

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  14. Tara says:

    Oh thank you for your quick reply! The first time for my mom was stage 0 and the second was stage 1. She did the normal protocol, lumpectomy, and radiation both times. Which makes me hesitate even more, ugh radiation in a spot where she can never receive it again.
    I found an aurora MRI here in state and plan to call tomorrow. I don’t have a breast doctor, my moms just went into retirement and I would want a natural minded one. I hoping they just let me schedule based on family history and mammogram results and I never want another mammogram again! Also really hope the insurance will cover it. I have a midwife who, if I need a referral, will help out.
    Just another point too, where the calcifications are is pretty much the spot where I had clogged ducts while nursing that turned into mastitis, makes me think about scar tissue.
    Thanks again, so nice to read all these comments and other people who are thinking like me, ahhhh.

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  15. dp4peace says:

    DCIS is always stage 0….but there are different grades. low – intermediate — high. Your mom did radiation both times? Was it same breast or different? It’s the high grade DCIS that is more worrisome…and would most likely show up on MRI. It would make sense that calcifications would be where clogged milk duct/mastitis was. I think mine may have been from that as well. If you have dense breasts, you may also be able to get an MRI covered by insurance. They sure don’t want to make it easy and will try to deter you, but I have found that persistence and perseverance has worked quite well in my favor. I have proved doctors wrong…and I have switched to doctors that are more in alignment with my decisions. Yes, it is nice to feel we are not alone…and we are not crazy!!!

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  16. Tara says:

    Phew had to clarify that with her, she kept telling me she had dcis both times but she finally went into her files. In 1993 Left Breast- Infiltrating Ductal Carcinoma – Stage 1 and in 2008 – Right Breast- DCIS – Stage 0. She did have radiation both times.

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  17. dp4peace says:

    Good to get that clarification. Your mom had invasive cancer, not just DCIS, which is a very different pathology. I would also find out what GRADE her DCIS was diagnosed as.

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  18. Ann Carter says:

    Hi Tara and Donna!
    Just read this thread and totally support you in getting an MRI, Tara. Because of your ‘abnormal’ mammogram, your insurance should cover it. Great that there’s a Rodeo machine in your state!
    I went through a very similar series of events as Donna, except for that my MRI was always clear and remains to be so. I had two surgeries, without ever achieving the clean margins they were looking for. In hindsight, I would not have done the mammogram at age 40. I thought I was being a good girl! After the two surgeries, I ended up walking away from all the recommendations and from all my doctors. It took a lot of digging and asking around, but I finally found a breast doctor who I love and who totally supports the route I took. She is a breast oncologist, so not an alternative doc–but she totally gets it. She gets all the overdiagnosis and overtreatment and realizes how controversial it all is. She gets that women get to make their own choices and that being fear-based isn’t the only or best route. She supports me in moving forward w regular MRIs and not mammograms. I highly recommend looking around for a doc who is open to your way of doing things. I hated feeling so alone. Finding my doc has given me such peace of mind. and getting the clean MRI–amazing!!! So glad you found Donna and her site! It was so helpful to me when I (finally) discovered it! There are more people than we hear about that are not doing things the recommended way when it comes to DCIS diagnosis. And regarding mammograms, did you gals hear about the new British study that recently came out? Totally affirms us NOT getting mammos!!!! All the best to you both!
    Ann

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  19. Tara says:

    She has been telling me she had dcis for years, I am a bit shocked honestly. She just goes with the flow and what the doctors told her and had to go and look at her records when I told her it wasn’t right. Does anyone have suggestions in the NY/NJ area? Although I am hoping to get the MRI and it will be nothing and I will be on my way!

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  20. Tara says:

    Spoke with my mom again, her dcis was with low nuclear grade and her receptors were estrogen 90%, 3+ and progesterone 50%, 2+.

    I also spoke with the MRI center here , I need to go get my mamogram films from the cancer center and then bring them to the other hospital where they will register them. They will then decide if I am a candidate for the MRI. I feel like I am having an interview!
    Thanks again for giving me a place to talk this out.

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    • Tara says:

      Hi, I finally heard back from the center with the rodeo MRI where I dropped my films. A NP called to tell me they recommended I get a stereo static biopsy, I already know this. I didn’t go there for a second opinion, I went so that I could get the MRI.
      I have to call back and speak with the radiologist there. I know as soon as I mention I prefer not to get a biopsy and would rather just go for a lumpectomy after an MRI confirms me needing one, I will be red flagged as “quack”:-)
      Any words of wisdom on what verbiage I should use when vying for my case. I really never want to have a mammogram again, so need acceptance into the Rodeo MRI club.
      Also, I do feel that biopsy can open the cancer cells and spread them, this is why I prefer a lumpectomy to a biopsy. I read in one of the comments that you might think contrary to that, is that correct?
      Is there anyone who leaves very small calcifications untreated? Do they turn into dcis or can calcifications be other types of bc?
      Thank you, I just want to be armed and have a strong case for the rodeo MRI. My midwife said she totally agrees and would write me a script for it. Why are the breast cancer centers so “stingy” with it? Is it an insurance issue?

      Tara

      Like

      • dp4peace says:

        Tara, it is perfectly reasonable to want to skip the biopsy if you will most likely need a lumpectomy anyway. To me this makes a lot of sense and my surgeon actually gave me the option. It made no sense to me to have another needle biopsy which I knew would lead to another surgery (as was the case the first time I had a needle biopsy and they said they wanted a bigger sample when it was only ADH). With your situation, no one knows for sure what it is and their theory is it could be invasive cancer and then they would have to go back for another surgery and do a lymph node dissection. That’s what the surgeon told me. I was certain mine was NOT invasive and I chose the lumpectomy without needle biopsy first.

        I have read that a biopsy could spread invasive cancer cells, but Dr. Lagios reassured me that it could not spread DCIS. I was totally clueless as to how invasive a needle biopsy really is.

        To make your case, go in armed with credible info. Print out some studies here:

        http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/

        If one Dr. says no, they will not order it, find another Dr. I even had a very compassionate Primary Care Dr. order it for me once. Whatever it takes….just know it is possible! My first surgeon told me I would never get it covered by insurance if I didn’t also do mammograms annually. I have proven her wrong for 3 years!!!

        Be sure and check on the price of the RODEO MRI….it varies widely I have recently learned! The last hospital I went to charged over $6,000. Also check with your insurance so there are no surprises.

        Lastly, I had an area of calcifications (4cm away from DCIS area removed) that were called “indefinite” on mammogram from June 2011. I chose NOT to biopsy these calcs and they have not shown up on 3 RODEO MRIs since. This is one of the reasons I am NOT doing mammograms….It would continue to lead me down the biopsy path….I am happy to have the peace of mind from the RODEO MRI that these calcs are benign…not worrying about it at all. The RODEO MRI is my form of active surveillance. Everybody’s bodies are different and everyone’s calcifications may be different too. I think you are smart by asking for a RODEO MRI before having any poking or slicing into your breast. This will give you a lot more important info. They are just so darn expensive….I think the insurance companies don’t want this to become standard practice…it’s just too impractical on a large scale. Seems to me the mammography industry is in cahoots with the insurance industry and the hospitals/imaging centers. It is WEIRD!

        Good luck and stay strong!! And keep us posted!! 🙂 Donna

        Like

  21. dp4peace says:

    🙂 Keep asking for what you feel you need!

    Like

  22. Lori Haines says:

    I was just diagnosed with dcis and they want me to see a surgeon immediately. Already telling me lumpectomy and biopsy of the lymph glands. I live in Ohio and I don’t know what to do or where I should be treated and who I should trust..please help

    Like

    • dp4peace says:

      Why would they need to biopsy lymph glands? This is NOT standard practice for DCIS. Sometimes we are told wrong info by nurses giving out the diagnosis. It happened to me as well.

      Please take some time to review all the resources and info here: http://dcisredefined.org/
      This is an excellent pamphlet for anyone newly diagnosed with DCIS (and their loved ones):
      http://www.bikenfly.org/dcis-final_for%20web.pdf

      Keep reading and asking questions. It is all very shocking and confusing at first, but with time and investigation, you will understand and make better decisions. Do you have a copy of your pathology report? Does it say a grade/size of DCIS. This is important to know.

      remember to take some deep breathes — often! Donna

      Like

  23. Tara says:

    Thanks again. My midwife did say she would write a script for the Rodeo MRI, wonder if I shouldn’t call the breast center back and have her just to that. The other issue is that I feel I am now going to be charged for a second opinion and what I wanted was to be given the go for the MRI!
    Regarding the biopsy and the calcifications, there is no way of knowing prior to a biopsy if it will indeed be dcis, the calcifications could be another type of bc so you don’t really know if it will spread, is that right? Is the only way to tell what type of cancer is via pathology reports either from biopsy or lumpectomy?

    Like

  24. dp4peace says:

    Yes, no way to know exactly what it is (it could also be benign) until pathology report from biopsy or lumpectomy….and then you definitely need a 2nd pathology opinion if results say high grade or unclean margins….and they are recommending more surgery, radiation or mastectomy (as they did with me).

    Like

    • Tara says:

      So I had the MRI and am now more confused. It did show microcalcifications in the same spot as the mammogram. Of course they want me to come in for a biopsy. In my mind I am saying leave it alone but then I think do I not do anything or do I ask for a lumpectomy or should I send the results in to someone else?
      I was pretty confident in what to do up until this point but now I am not sure at all.

      Tara

      Like

    • Tara says:

      Can you explain this “I am happy to have the peace of mind from the RODEO MRI that these calcs are benign…not worrying about it at all. The RODEO MRI is my form of active surveillance”

      Thank you!

      Like

      • dp4peace says:

        Hi Tara, the 3 MRIs that I have had over the last 3 years have shown nothing (despite a very close margin and another area of indefinite calcs). This gives me peace of mind. In 2011 when a mammogram was declared BIRADS 5, I asked for an MRI which also showed BIRADS 4….and I was faced with a dilemma as you are in….there is no way to truly know what it is in there….and if mine had become invasive or high grade. In my gut, I knew that it was more low grade DCIS as I had left a positive margin 1.5 years earlier. So I elected to have it removed by lumpectomy. I skipped the biopsy as it was my 2nd time around and I knew that biopsy would just lead to surgery anyway. You are at a different point as you have not had any biopsies or surgeries and there is no way to know what those calcs are a sign of. They could be benign but they also could be something of concern. You could wait and redo MRI in 6 mths or have a biopsy. That’s pretty much your choices — and depends on your tolerance for the unknown and ability to live without fear of that unknown. Did they give you a BIRADS score? You could go to a surgeon like Dr. Esserman who is more cautious at doing biopsies and surgeries and more willing to wait and watch. She told me she probably would not have done immediate surgery after my initial biopsy showed ADH. She would have waited and watched it through mammos and MRIs. Hope this helps.:) Donna

        Like

  25. Tara says:

    I hear back after just leaving a message for the radiologist! The NP called back and said she agreed and to go ahead and get a script yahoo. I called my midwife who totally gets it and agrees, so will have it soon. I just need to call back for an appt the first day of my period.
    Oh and the insurance, any advice on that one? The midwife doesn’t take insurance so they won’t be able to help much.
    I’m in the MRI club, never would I have thought I would be excited to get an MRI!

    Like

  26. Tara says:

    Sill formulating thoughts, sorry for all the posts, I only have an hour to call them back and ask appropriate questions before the weekend. I don’t think I asked the right questions on the phone. Or perhaps I was under the inpression their would be more of a microcalcification diagnosis just like I had with the mammogram, I thought it could tell more than just that?

    Like

  27. Tara says:

    Thank you Donna, everything you say helps! They said it was still a 4, same as on mammo. Ugh, I am junking do the biopsy, it will be quick and over with and not waiting around. The thought of a titanium chip in me is not pleasing. Okay, much to think about, thank you so much.

    Like

  28. Ann Carter says:

    Hi Tara,
    I am so sorry you have to be dealing with all this. So glad you are reaching out. Thank you Donna for your wise words. I don’t have much to add. Except please know that it’s OK to take your time with this decision. I feel that, looking back, I jumped right into the biopsy and 2 lumpectomies without questioning anything–even though my gut did have huge hesitations. It was only after my surgeries (when they recommend a mastectomy!) that I began really seeking other options/paths/opinions. I highly recommend looking around til you find a doctor that really feels like a partner in this journey. I have one now and it’s an amazing experience. So different from my first doctor.
    Wishing you the very best. Try to stay calm and redirect your thoughts to something peaceful when you start to get overwhelmed. I sometimes calm myself by simply saying to myself: My thoughts are peaceful and calm. I say it over and over and then it actually feels true. Also, I just went through another pretty devastating experience (miscarriage of a very very wanted pregnancy) and I think the most helpful thing I practiced during this time is daily gratitude. Even though I was so sad and it felt so unfair, I found so much to be grateful for every day and it was/is hugely uplifting. I hope that is helpful and doesn’t sound preachy. Holding you in the light, Tara!!!
    You too, Donna : )

    Ann

    Like

  29. Tara says:

    Oh Ann, I am so sorry to hear this. And you aren’t too preachy, I am very spiritual and get through days with my own mantras and meditations.
    I am in no rush in that both times I was asked to schedule a biopsy on the phone as I was speaking with them and both times declined at that moment. On the other hand we would like to have a baby and I will be 40 this year, so there is the rush to get over this bump and head in the baby direction sooner rather than later.
    I am confused by the MRI, I thought it would be a more definite answer to the microcalcifications, I know they are there from the mammo, so this wasn’t news. I suppose I should take comfort that nothing else was found?

    – From what I understand microcalcifications can be dcis or infiltrating distal carcinoma, but wouldn’t they be able to tell of it is in the ducts from the MRI?

    -Isn’t the MRI able to advise invasive or noninvasive?

    – so the MRI said the same thing the mammo did, bilateral scattered pleomorphic calcifications 0.7 cm, BIRAD 4

    – if I do the biopsy and it some other type of something where the cancer does indeed spread? I think I am ruling that out based on the type of calcifications?

    – in this situation, knowing what you do now, would you still opt for the biopsy or request a lumpectomy. Everyone thinks I am nuts for considering the lumpectomy if the biopsy can show it is nothing. Can the biopsy possibly get all of it if it is malignant?

    – waiting 6 months would drive me crazy and I am not sure I could get insurance to cover another in 6 months with nothing having been diagnosed yet.

    -I had a thermogram and it showed absolutely nothing, not sure how I feel about that.

    Any thoughts would be greatly appreciated! I haven’t seen the report from the MRI, I hope the info the NP gave me was accurate on the phone. I flip flop between just going to get thermograms for now on, agggg.

    Like

  30. Ann Carter says:

    Oh Tara, I hear you! I feel you! I remember feeling so much of these same feelings/concerns one year ago. I am so tired but just have to respond quick before bed. First of all, I am 42. I was diagnosed with DCIS 9 months after my wedding (married at 40, diagnosed at 41). ALL I wanted to be doing was focusing on getting pregnant when BAM, the stupid f’ing diagnosis! So I HEAR you on the pregnancy desire and biological clock thing, sister!!!! Thoughts around that: it took my body a long time to heal from the 2 lumpectomies I had. As far as set backs re: pregnancy–that was huge and it really sucked. It would have taken much less time to heal from the biopsy. That was very minor compared to the surgeries. So, there’s that to consider. As for what an MRI shows/doesn’t show–I think Donna is more of an expert on that. But it is my understanding that an MRI will pick up invasive cancer–end of story. Donna? I think the kind of invasive cancer to worry about spreading in the event of a biopsy is when it looks like a cyst. That happened to my cousin. The cyst is burst upon biopsy and even though they say it doesn’t cause spreading, my cousin is positive that is what happened to her. I don’t think that would be an issue w calcifications. Also, I don’t think a biopsy would be considered effective as far as removal of invasive cancer. Honestly, since you asked what I would do looking back–I would do the biopsy for sure rather than go straight to a lumpectomy. I only did the lumpectomy because at the time I was told I absolutely had cancer. To the doctors I was working with, DCIS is absolutely considered cancer that needs to be treated. If I got the diagnosis now, I am not totally sure what I would do as far as moving forward w surgery. It would depend on the grade and pathology report. But I would consider leaving it alone and moving forward with keeping an eye on it. That is what I am doing now, as the surgeries weren’t considered successful anyway since they didn’t get clean margins. Sometimes I wish I would never had had a mammogram. But I try not to go there either. I try not to be totally one sided about it. It happened how it happened, and I have learned so much. Honestly, if you could find out that it is nothing at all to worry about it you would be free of this stress and could move forward with baby making! The stress of not knowing can be so intense. Please keep me/us posted. So glad we can be having this conversation. Feel free to call me at 612.822.3892 if you want to talk it through at any point. I am in MN–central time. With love! Ann

    Like

  31. Tara says:

    Thank you so much! I called this morning and got a biopsy for next week, this has been since February, I just need to know at this point. The chief of radiology in the breast center at the hospital with the breast MRI is performing the biopsy, I am happy about that. She is the one who didn’t hesitate when I asked for the MRI.
    My mom has her surgeon who is getting ready to retire, he is in manhattan, I have been pretty happy not having to go into the city everytime I needed something.
    I have been working through and getting the prescriptions from my midwives. They are very naturally inclined so it has been working well. Depending on the pathology reports will depend on my next steps of having a breast doctor? Is it advisable to have a surgeon or an oncologist after having calcifications on a mammo? Not sure.
    Has anyone done research on the chip placed inside after a biopsy?
    I can’t tell you how at peace it makes me to be able to come here. I will write up my experiences to share with friends as they are all coming to the age of routine mammograms. I am typically not open with this sort of thing but want others to know everything doesn’t have to be done so step by step, there are other options!

    Like

  32. Ann Carter says:

    I am so glad you made a decision you feel good about!
    As for whether or not you need a surgeon or oncologist after calcifications appear on a mammo—you need neither unless it comes back as a diagnosis of actual cancer! If that does happen (which I am totally holding WON’T be the case) but if it does, I HIGHLY recommend starting with an someone other than a surgeon. I think the system that gives us a surgeon as our main doctor is VERY flawed. That is what happened to me. Surgeons do surgery. When one decides she wants surgery, then it’s time to find a good surgeon. Otherwise, finding a supportive breast doc/oncologist is the way I would go. And for the record, my OB/gyn (who is pretty conventional) asserts that people with a DCIS diagnosis do not need an oncologist. I agree. The only reason I now have one (I call her my breast doc, not my oncologist) is because I walked away from all the recommendations of our premier breast center here, as well as that of the Mayo Clinic! That was so scary and I felt I needed someone from within the medical system to be part of my team of caregivers. I found someone totally supportive at the U of MN and she is the one who now orders my MRIs and supports me not doing mammos. She recommends the latter but understands the controversy about them and supports my choice.

    I don’t know much about the chip, but it’s titanium, right? So of course it’s probably ideal not to have anything implanted in one’s body, but titanium is truly supposed to be inert in the body. I have a dental implant made out of one and have had no problems and I’ve had it for many years.

    I think what you’re doing makes so much sense and I totally support you. Getting more information is a great next step! And it sounds like you will be in great hands. My biopsy was not a pleasant experience, but it was over quickly. Give yourself a couple days to rest afterwards if possible. I wasn’t given that advice and wish I had been. Not only is it a physical trauma but it’s emotionally intense too. Bring along your partner or a pal if possible.

    I am totally imagining that you will be getting good news, dear one! Keep us posted.
    And here’s to babies for us both in the coming year!

    Big Heart,
    Ann

    Like

  33. dp4peace says:

    Wonderful reply Ann. Thank you!! Blessings to you and Tara

    Like

    • Tara says:

      So, I jumped off the biopsy today, literally.
      First we didn’t agree on not getting the chip, I have a nickel allergy and am a bit hesitant first putting a foreign object in my body and second that it may contain stainless steel which could also include some nickel. The alternative they have me was full surgical removal. I decided to go ahead and agree to the less of the evils.
      When I received my review of the MRI from the np at the hospital she said that yes it was a birad4 suspicious and the biopsy was still recommended. I immediately called my midwife who is only in the office 2 days a week and asked her to send the script over since they would be in prior to when I got the appointment.
      I mentioned to the tech today who was setting me up that I never actually saw the MRI, just that when I called the np said it was suspicious and still BIRAD 4. She was like oh that must have been from the mammo because we don’t rate mri’s like that, when the dr comes in to start the procedure she will talk to you about it. In the meantime I was getting films and all ready for the biopsy, on the table, clamped in and all.
      When the dr came in the tech asked about the MRI, she says “oh, the MRI found no discrete suspicious finding in the area of mammo graphic concern”?!?! I was like well what am I doing here?
      She mentioned how the mammogram showed the calcifications and so did the mammo and there still could be something behind it. The tech gave me a better description about two different things but they aren’t on the report and I can’t remember exactly what she said but it was along the lines of it could be because you are still menstruating, and that was just your first baseline, you have nothing to compare it to. Pretty much I am unclamping you, go and think about it, reschedule if you would like or just wait the 6 months, they are really, really small.
      I am just a bundle of crazy emotions right now. I wish I could remember exactly what the tech said about frontal and something else. I am trying to process this all, it is hard to ignore it but the MRI has me feeling a bit confident, I think, I am a bit wishy washy at the moment.
      We eat pretty clean already, I am going to look for all the books and dietary recommendations so when I got back for the next MRI it is gone or at least not grown! And please, if you think you would still get the biopsy, I am not opposed and totally lean on you more than what was happening in that room, if the reception was so bad in the building I would have come here first!

      Like

  34. Ann Carter says:

    Yowza!! What a day you’ve had!!!
    Ok, let me make sure i am clear. You found out today that the MRI actually showed nothing of concern? If that is indeed the case, that is great news. I guess what i would do next to get clarification on that, if you haven’t already. I would get clarification on all of this that you wrote:

    “She mentioned how the mammogram showed the calcifications and so did the mammo and there still could be something behind it. The tech gave me a better description about two different things but they aren’t on the report and I can’t remember exactly what she said but it was along the lines of it could be because you are still menstruating, and that was just your first baseline, you have nothing to compare it to.”

    After getting clear about this, I would consider getting a second opinion. Didn’t you mention getting a referral for a doctor who sounded good? I think second opinions can be really helpful. That said, my 2nd opinion was at the renowned Mayo Clinic and they still gave me the same fear-based recommendations the first place did.

    Basically, it is my understanding that any scary stuff would show up on an MRI. If your MRI looked good, that is GREAT news!!!! I didn’t have an MRI until a couple days after the biopsy so the area that was biopsied was impossible to really see on the MRI because it was so recently injured AND had the chip in it. Glad you did an MRI first!

    Keep us posted. This is sounding good.
    All the best,
    Ann

    Like

  35. Tara says:

    Yes, I am really emotionally drained. The calcifications are on the MRI, but it said “there is no discrete suspicious finding in the area of mammographic concern.” When I asked the dr she said it came back non suspicious.
    When I call tomorrow I am going to ask for the tech (rather than the dr) and have pen an paper rather than my breast clamped to a table!

    Like

    • Tara says:

      Okay, I spoke with my tech today. She said that the “no discrete susupicious finding in the area of mammographic concern” actually means it did not see the calcifications, which seems crazy to me.
      She said there was diffuse enhancement due to the extreme density in my breast and that there was no foctal (sp) enhancement in any particular area. There were no calcifications and no susupicious findings.
      It does seem crazy to me that the mammo picked up the calcs and the MRI didn’t? And of course based on the mammo they still reccomend the biopsy.
      Should I send the MRI out to someone else to read along with my mammo? I asked that it has been 3 months between the mammo and the MRI and if we could check growth and she again said they weren’t picked up on the MRI, that is really confusing me.

      Like

      • Tara says:

        I am trying to just go with the MRI results but I am still wondering if I should have someone else read them. It couldn’t be local since it is the only machine in the state. I know there are others who read pathology but how about a mammo paired with an MRI?
        I am really trying not look much up because it seems many articles are referring to regular breast MRI and not the rodeo MRI.

        Like

  36. Ann Carter says:

    Hi Tara,
    My thinking is that it is quite likely that your reports are being accurately read, and that the news is good. My understanding is that mammo’s are more sensitive to calcifications than MRIs so your reports don’t surprise me. Calcifications often meaning NOTHING. I think any radiologist would be able to read both the MRI and mammo reports, so it’s fine to find someone to give you a second opinion on both of them. Donna knows more about the Rodeo MRI than I do, but from what I have read it is excellent and it is great news that your MRI is clear, my dear! If you want a second opinion, you can request that the images of your tests be sent to a second doctor. That is what I would do. Find a second place/doctor whose opinion you want, and have them review your images and reports and go from there. Not sure if all places will be able to read/understand the Rodeo MRI images–that’s the only thing I’m wondering about. Thoughts on this, Donna?

    In any case, please know that I truly think you’ve gotten great news. Try to find some peace in that as you decide how to move forward.

    What is the doctor you’re working with advising you to do?
    Sending love & light,
    Ann

    Like

  37. Ann Carter says:

    One more thing. I would only be going for a second opinion if I was still feeling unsure/concerned about my test results. But based on what you’re describing about your MRI results, there may be no need for a second opinion. What are your thoughts, Donna?

    Like

  38. dp4peace says:

    Hi Tara and Ann,
    I agree with Ann — great news! The RODEO MRI is far superior to regular MRIs according to studies: http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/ — a 2012 study by Dr. Bruce J. Hillman etal showed that, while the false negative rate for whole body MRI has historically averaged 15%, the false negative rate for the RODEO MRI is less than 1%. In other words, if a RODEO MRI finds no cancer, there is only a 1% chance that it missed something, while with whole body MRI there is still a 15% chance cancer was missed. This study also showed that while whole body MRI has been criticized for its high false positive rates, typically between 32 and 41%, RODEO MRI has a very low false positive rate of only 11%. This means if a RODEO MRI finds something suspicious, the chances of an unnecessary biopsy are much lower.

    Tara, I am actually in the same boat as you…In Sept. 2011, my mammogram showed an area of “indefinite” calcifications that was 4mm away from a “highly suspicious area.” At the time, I had a regular MRI (wasn’t tuned into the RODEO MRI being so important), which also showed that “highly suspicious area” as being “suspicious.” I knew I had left a positive margin 1.5 years earlier so this was apparently residual DCIS (as confirmed by the surgery). However, I did not remove or biopsy the other area of “indefinite” calcifications — and I have monitored that area plus the .1mm “close” margin left from the surgery with only RODEO MRI for the last 3 years and this has resulted in no evidence of anything! In 2011, post surgery, I was advised to have a mastectomy, double lumpectomy with reconstruction or at least 3 weeks radiation. I did not do any of that! I feel confident in the RODEO MRI that it would pick up anything worrisome. If you get more opinions from radiologists, they will most likely recommend biopsy. They pretty much have to if the mammogram shows anything suspicious. I think it is truly one of the hardest decisions to make, but you really have to listen to what your gut is telling you. I have experienced great pressure from the medical community and had I not had such a strong support system opposing these pressures, I probably would have succumbed. That’s why I created this blog. I am forever grateful that I did NOT succumb to the pressures that I originally fell prey to. I had already had a core needle biopsy and an excisional biopsy (lumpectomy) by the time I had any intervention to stop the madness. Even Dr. Esserman said she would not have done the excisional biopsy on me after ADH was discovered from core needle biopsy. She would have been more conservative about surgical intervention. Granted she would have pushed for tamoxifen, but every Dr. has their beliefs, perspectives and agendas. Tara, no one can give you the answer. You could also do an ultrasounsd or thermogram for more peace of mind. The good thing is, there is NO RUSH to do anything!!! The fact that the RODEO MRI showed nothing is fabulous news!! If you really want another opinion, I would fly to SF and see Dr. Esserman! That’s what I did!! Or you could just take a deep breath and simply re-read over and over again all the quotes I have from her here:

    Dr. Laura Esserman, MD, MBA, professor of surgery and radiology at UCSF and Director of the Carol Franc Buck Breast Care Center at UCSF states:

    “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

    May you find your peace,
    Donna

    Like

  39. OptionsNeeded says:

    Hi Donna, I get my diagnosis tomorrow. For now, I do not believe I will choose the surgery option if I am diagnosed with DCIS unless it is high grade. If high grade, I don’t know what I’ll do yet.
    Do you know of an oncologist in the Los Angeles Area that has a similar philosophy as Dr. Esserman?
    Also, do you know of resources for alternative nonsurgery methods for treatment for high grade DCIS?
    I am hoping for the best and wish this would all blow over.
    But if not, I need to figure out what my options are.

    Like

    • dp4peace says:

      Hi OptionsNeeded,
      So sorry I did not reply back in April. Sometimes I miss posts. Better to email direct at dp4peace@yahoo.com with specific questions. Wonder what you decided and where you are at now. Hope you found some good resources and hope to hear an update! Donna

      Like

  40. Sarah Buzi says:

    Donna,

    It was a great inspiration to meet you! Please keep doing your work. It is highly important and valued!

    best

    Sarah Buzi

    Like

  41. Donna says:

    Thank you Sarah. It was wonderful to meet you as well. You have an important story as well. Keep sharing! 🙂 Donna

    Like

    • Christina says:

      Hi Donna,
      Very thankful for your informative site. I just got a response from Dr Esserman and I think it would be helpful to add two things to look out for when deciding how to proceed with a DCIS diagnosis:
      If the pathology comes back as HER2+
      If the lesion is large in size
      I was hanging on to my intermediate grade status and hoping to do active surveillance but once the pathology came back as HER2+ and size estimated 7cm, she advised me to get treatment as these are possible invasive components. Just wanted to share with community.

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  42. Ellen Berman says:

    Hello all! I had a stereotactic biopsy with two different results: One area of known 2.8 cm high-grade DCIS and another area, near the chest wall, that was benign. Not one of the 4 surgeons I have seen has given me any prognostication of the chances that, because the whole area looks “suspicious” and one area was totally benign, perhaps that high-grade DCIS is the ONLY area of high-grade DCIS. Anyone had this experience? I’m also confused as to how to refer to a biospy when two different areas of tissue are taken — is that considered TWO BIOPSIES? Or is it one because it was during one biopsy session? THANKS ALL! P.S. My breasts are considered “small” compared to the size of the DCIS area so I’m weighing my options of lump. vs. mast. Wow, all these years I thought my bosoms were quite ample! (34-C)

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