dcis 2 lumpectomies with positive margins now mastectomy

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TrmTab
TrmTab Member Posts: 832
edited May 2016 in DCIS (Ductal Carcinoma In Situ)

I have obviously been trying to not have a mastectomy with the DCIS diagnosis, but after 2 lumpectomies I still have positive margins...2 sites in left breast...and my surgeon is recommending mastectomy.

Both lumpectomies showed no invasive cell action in the pathology....but my surgeon still recommends Sentinal Lobe Biopsy:

"I think the SLN biopsy will provide minimal new information in your case. The benefit is probably theoretical"

My concern is the risk of permanent lymphodema is more than theoretical.

I lean to not having this additional procedure....thoughts?


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  • Annette47
    Annette47 Member Posts: 957
    edited May 2016

    The problem is that since they haven't found clear margins yet, there is more cancer in your breast. While the odds of any of it being invasive may be low, there is no way to rule it out - it could be that the one area that has begun to turn is past the margins they've already achieved. After the mastectomy, they can examine ALL the tissue to see if there was in fact any invasion, but they can't go back afterwards to examine a sentinel node if it turns out there was. They can only identify sentinel nodes while the breast is still intact. Supposedly there has been experimentation with a new technique such as that used by Angelina Jolie where they mark the sentinel nodes prior to the mastectomy just in case but that is not common practice at this time. You could ask your surgeon about it though. If there is as yet unidentified invasive cancer, and you did not have a SNB, then the next step could be full axillary dissection which carries a much greater risk of lymphedema than does removal of fewer nodes.

    So you need to weigh the chances of lymphedema due to SNB (I think it's about 3% but can't swear to that) that may not be necessary versus the chance of lymphedema from an axillary dissection taking into account the chances that the procedure may not even be necessary. The decision you make will depend on your own comfort level with the different types of risk, but an important first step is doing as best you can to quantify those chances (lymphedema with SNB; need for axillary dissection; lymphedema following axillary dissection) so you know what you are choosing from.


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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    HI Trmtab and welcome to Breastcancer.org!

    We're sorry for the reason you're here but really glad you found us. As you can already see, our Community is full of very helpful, insightful, and knowledgeable members offering great advice and guidance.

    We look forward to hearing more from you and what you and your doctors decide!

    --The Mods

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited May 2016

    I had 3 lumpies till an all clear but suspect my dcis was closer than yours, also I got bible books

    I would follow the docs advise or reach out to a dif surgeon

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  • LAstar
    LAstar Member Posts: 1,574
    edited May 2016

    I had the same situation. I had 2 LX then a MX with 2 lymph nodes taken (a third looked "angry" and was taken during a later surgery). All were clear. I later read about surgeons being able to ID the sentinel nodes at the time of MX and then mark them without taking them. Then if the final pathology indicates invasive cancer, the nodes can be taken later. It's definitely not widely practiced, but I know of one woman on this board who requested it and her BS was happy to do it.

    I was also quoted the statistics of low incidence of LE, but I think these pertain to stage 1 and greater LE. I have Stage 0 LE which involves achiness in the arm and small but measurable swelling. I have to wear a sleeve when I fly and work out to be sure it doesn't get worse. While I can go for many months without any issues, it's a condition that I will have to be careful about for the rest of my life. However, not everyone gets LE even when many more nodes are taken. Finding a OT or PT who is savvy to LE helps a lot -- they can help you get a sleeve that fits appropriately & show you how to do lymphatic drainage massage. Part of the care is to make sure that the lymph vessels never get swollen -- when they stretch out, they are more apt to retain fluid (or something like that!).

    When you look through the DCIS threads, you will see many signatures with details like "0/3 nodes" meaning that none of three nodes contained cancer. However, there are also cases of someone who's told that it's "only DCIS" and getting a positive node result. One of my friends had no cancer detected in her breast -- it was only in her lymph nodes. BC is strange stuff.

    This is a tough decision!!! Annette has the right advice: research and make the decision that resonates with your comfort level. I wish you the best -- the decision-making part is so grueling. It's almost easier to be recovering from surgery!

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  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    I would go for the SNB. I have (hopefully) a very small, early BC and my BS has always said he's going to do a SNB. Its just a chance I'm not willing to take. And in your case, given they didn't get clear margins and that "They can only identify sentinel nodes while the breast is still intact", do it now.

    Just MHO

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  • TrmTab
    TrmTab Member Posts: 832
    edited May 2016

    Proudtospin

    My surgeon wasn't willing to do a third lumpectomy...

    what are bible books?  do you really mean "the bible"  and prayer? or something else??

    I'm afraid that the more I read on this site, the less secure I feel about the mastectomy




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  • Kechla
    Kechla Member Posts: 231
    edited May 2016

    TrmTab, I had a bi-lateral mastectomy (1 was prophylactic) and 3 sentinel nodes taken at the same time. I did not have any trouble with lymphedema. My mom had a mastectomy (she had invasive and lymph node involvement) and I think they took a lot of hers and she did not have lymphedema (and still almost 20 years later does not get any swelling). I'm not saying this to try to convince you, just to let you know there are many women who have had this done without symptoms. I would recommend looking at the statistics and deciding what you are comfortable with from there. You will often find the 3% on this site because that is when we post. When we need help... :) Taking the lymph nodes gave me peace of mind (knowing that they could not be taken later after a mastectomy...)

    Whether a surgeon will do a 3rd re-excision depends on a lot of variables. Size of breast, extent of margins affected, grade of DCIS, patient preference, etc. If you are not wanting a mastectomy, you should consider getting a 2nd opinion.

    Best of luck with your treatment!

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