2 different opinions - help!
I have just been given a second opinion for treating my DCIS that is the complete opposite of my first opinion and now I am even more confused than ever! My surgeon, oncologist and radiation oncologist here all agreed that I should be re-excised to create a bigger margin and then maybe go on Tomaxafen. They also agreed that I would not need radiation. The second opinion says no surgery is necessary, but radiation and Tomaxafen are. The second opionion is from an oncologist in NYC who I met a couple of years ago so it is someone who I know. I was diagnosed with DCIS after a routine mammogram in December, followed by a needle biopsy and then a lumpectomy. They were not able to determine whether it is estrogen+ as it was so small. I had a complete hysterectomy about 5 years ago and was on estrogen replacement til this diagnosis. Right now I am thinking I might just lop them both off so I don't have to worry about this any more - it's exhausting! Thanks for any advice!
Comments
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Sounds similar to my situation. First surgeon, radiation onc. and medical onc. said I could do without the radiation, just monitor closely and maybe do Tamoxifan, second surgeon said do the radiation and the Tamoxifan. I am now set to get a third opinion. You are right -- this is exhausting both physically and mentally!
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Ditto Bonnie Jean. I got slightly different advice from 2 breast surgeons, and asked my primary care physician how to decide. He said that if two doctors offer 2 different responses, it often helps to talk it through with a third, which is what I did. It's not just that you decide with the majority (though I did), but that a third person can help you understand the reasoning behind each set of suggestions.
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dsj - did you get the third opinion from another oncologist or your primary care doctor? Thanks!
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How exhausting for you! I would guess that your biopsy showed the least aggressive type of DCIS and thats why you are getting the different recommendations. I will note that radiation is not simple---it can have a big impact on your skin, as I understand it, and you don't know until you've done it. Likewise, the most recent thing I was told about Tamoxifen is that it only works to suppress DCIS while you take it. So when you stop the chances go back to being just like someone who never took it.
If it were me, I'd go for the 3d opinion and I'd try to get someone at a breast center who specializes in this stuff. I will say, however, that my DCIS was believed to be so small that the person who did the biopsy thought they got it all with the biopsy. But when I did Lumpectomy1, it was found to be .7 cm still in there. And when I went back for Lumpectomy2, the size was increased to 1.1 cm.
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tamoxifen doesn't act to "suppress" the DCIS--it blocks the estrogen receptors in the breast tissue, thereby decreasing the risk of invasive bc. Tamoxifen does not stop "working" completely when you stop taking it-----it is thought to continue to decrease your risk for 10 to 15 years afterwards. My mom took tamox many years ago for ILC; is now a survivor of over 23 years without a recurrence. I took it as a preventative (high risk from LCIS and fmaily history) for 5 years; now I take Evista for further preventative measures.
Anne
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peggyo, I first saw 2 surgeons, both of whom said a lumpectomy and radiation would be a good choice for me. One of them also wanted to do a sentinel node biopsy (SNB) and the other said not to unless final pathology came back invasive. I asked my PCP how to decide and he referred me to an oncologist. When I saw the oncologist, I told him I didn't know how to choose because I felt like I was deciding not just who would do the surgery but also who would coordinate my care from there on. (Both surgeons had presented themselves as the "quarterback" of my team.) The oncologist said that, no he (i.e., the oncologist) would coordinate my care and would follow me up for at least the next 5 years. It made so much sense to me. That plus the fact that my husband and I were very impressed with the oncologist (he spent about an hour with us and talked through every option) and that he came highly recommended made me feel hugely better. He then referred me to another radiation oncologist who had more state-of-the-art technology and suggested I consult with her before choosing a breast surgeon. Which is where I am right now--waiting to see radiation oncologist and then (I hope) to schedule surgery. The oncologist, by the way, said not to have the SNB but also said that either surgeon would be fine--he had worked with both, both were fine surgeons, and the surgery itself was not complicated. I think I got fixated on the breast surgeon because that was my first referral. In retrospect, I wish I had started with the oncologist.
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DSJ: This is something I'm learning now too -- that the medical oncologist is the person in charge of it all. I always thought it was the BS who was at the head of the team. Seems I'm learning something new every day on this journey I've been forced to travel.
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Well, certainly both BS presented themselves as the person in charge. And that's what gave me so much trouble at first: should I got with someone who did a lot of surgeries or someone who was a researcher at the university as well as surgeon. I thought I was trying to decide my 5-year plan when I hardly knew what kind of surgery I wanted to do. Talking to an oncologist helped me put that into perspective. I decided I wanted a cancer specialist to coordinate my care and that I wanted a good surgeon to do the lumpectomy. I actually haven't selected the surgeon, but I am more confident about the lumpectomy, since every doctor I have spoken to has said it's a good option for me, at least to start with.
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I am really glad to know that I am not alone in being so confused! I am just really scared to make the wrong decision and have either too much done (i.e. radiation and tamoxafen) or not enough (re-excise and no radiation, maybe tamoxafen). I've read a lot about the fact that DCIS can be treated successfully by balancing hormones naturally as well, which adds a whole other dimension to this decision. Anyway, thanks for all your advice!
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Your DCIS was less than 5mm? This site mentions that size as the cutoff for radiation. You might consider mammosite radiation for a shorter course.
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Peggyo,
It is very confusing to be sure. That is why I needed the reassurance of someone who was and still is one of the leading DCIS experts in the world.
After surgery for my DCIS in 2007, I was told I needed a mastectomy because my margins were positive. Since I didn't want that for a pre-cancer, I consulted with a world renowned DCIS expert and pathologist, Dr. Michael Lagios. He reviewed my pathology and said I did not need more surgery, because he didn't see any residual DCIS. He has a breast consult 2nd opinon service that any one can use at www.breastcancerconsultdr.com/.
He can also help you decide if you need radiation or not using the Van Nuys Prognostic Index (which he and Dr. Mel Silverstein invented as a predictive tool for recurrences). It is based on your margin size, your DCIS size and grade, and your age. Using the Van Nuys, he calculated my recurrence risk as only 4 percent, so using radiation to cut this risk in half was not worth it for me. He said that tamoxifen was also not beneficial for me for the 2 percent risk reduction that the most recent studies show.
To bring my 4 percent down even further I have also become a vegan, exercise regularly, balance my hormones and take a few supplements like DIM, fish oil and vitamin D.
No matter what you decide, ultimately you must do what you feel comfortable doing.
If you would like to discuss this further, feel free to send me a personal message. I will be happy to answer any questions that might help you with your decision.
Sandie
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Just wanted to pop in here and add my two cents. My DCIS was really small and I still had radiation and am on tamoxifen. I do a lot of advocacy work and the protocol for radiation was not just recommended by my onc. At the breast cancer symposiums I have attended, studies were discussed that indicated that there is a much higher recurrence rate in women who did not have rads. At the time I was diagnosed I was not thrilled to have to do rads, but it was very doable and I do not regret having it. I viewed both as my insurance policy. If I had a recurrence without doing them, I would have been kicking myself about not having done everything I could to avoid having it come back. I will try to get back here and post the studies I am referring to. You just need to educate yourself to the best of your ability. We all use different criteria to make decisions for ourselves. What was right for me may not be the choice you make for yourself. Blessings to all.
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