Has anyone had positive margins, and done chemo/rads anyway?

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Abracadabra
Abracadabra Member Posts: 1,369
edited December 2016 in Surgery - Before, During, and After

I had a lumpectomy (July) and re-excision (August) in my right breast , and the surgeon was unable to get clean margins. The case went to a tumour board, and they decided that since I had 2/6 positive nodes, they didn't want to delay chemo. They advised that I start chemo, and then afterwards have extra boosts done to the tumour bed when I was getting radiation.

I did start chemo in October, and it's going fine. But when I recently had a preliminary meeting with my radiation oncologist, he clearly felt that the surgeon should have gone back for another re-excision. He's going ahead with the plan to give me extra radiation to "mop up" the area (his words), but it left me feeling unsettled.

Has anyone else had a situation like this? Should I be considering mastectomy? How bad is this?

Thanks, Barb

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2016

    A, sorry you are dealing with this. i do not have any experience with this, but wanted to let you know that someone is out there! I'm not sure if you could get a second opinion at this point or if that would be helpful. Even with a mastectomy, all of the breast tissue is not completely removed. I am not sure what other options are available. I can understand your concerns. It would be nice if the Dr's were all in agreement. When I was DX'd, I had a meeting with all of the Dr's involved before my TX started. Maybe someone else will chime in! Best wishes moving forward.

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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited December 2016

    keepthefaith - Thanks for your reply. At this point, I still have months of chemo to go, so I have some time to think about this. I know that starting chemo was important because I had 2 positive nodes. I think that if I do the chemo and radiation, they will monitor the breast and treat anything new as a local recurrence. It just kills me to think that they left some unknown quantity of cancer in my breast!

    I'm hoping that someone who has gone through a similar situation will share their experience.

    Thanks again, best wishes to you too!

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  • Icantri
    Icantri Member Posts: 93
    edited December 2016
    I am so sorry you are going through this!

    Can I suggest that you try not to worry about the margins issue *for now*. I hate to think of you worrying about that in addition to the stress of going through chemo.

    In no way am I belittling your feelings --I would absolutely feel the same if I were you!!! I am hurting for you. Let us (and all those who love you) support you and take some of your worry, while you stay strong and get through chemo.

    Maybe after chemo it will be more clear what your next step should be. I personally would consider the mx but that's just me. Hopefully as you wish someone who went through your particulars will respond with better thoughts.

    Wishing you peace and sending hugs. You are not alone. So many of us here saying "wtf????" after surgery. :) stupid cancer.
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  • Leslie2016
    Leslie2016 Member Posts: 316
    edited December 2016

    Hi Abra. I'm kind of in the same boat. I had a lumpectomy for IDC, which they did get clean margins, but they also found some DCIS that we didn't know was there. Since I'm triple positive they wanted me in chemo right away, so that's what I'm doing, but the only plan seems to be to radiate after to hopefully get all the DCIS. I don't know if I'm comfortable with that or not. Like you though, I have a few more months of chemo to figure it out, so I plan on starting to ask some questions. It really sucks...I just want to get through this and know we got it all. I think my first questions at my next appointment is how will we know since the mammogram didn't pick any of it up in the first place...MRI? Another biopsy after I've done radiation? I don't want to leave any there to just have to go through this again 5-10 years down the road if doing something more now would take care of it.

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  • Lisey
    Lisey Member Posts: 1,053
    edited December 2016

    I just wanted to jump on here in favor of Mastectomy. My breast was trying to kill me. I didn't want it to stay because it could recur again and again. I chose Mastectomies and am so glad I did. I'm not sure why in the world you'd even hesitate given the margin issue. Get that mastectomy just for peace of mind. I"m flat and fabulous by the way, no more surgery for me. I love my new body - I can wear clothes I never thought possible and look about 20 years younger (the large boobs aged me for sure).


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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited December 2016

    Ladies,

    Thank you for your replies and your support.

    Icantri and Lisey - Yup, I've got to agree that mastectomy seems like a logical choice.

    Years ago, my mom died of uterine cancer. Several years ago, when I found out I had large fast-growing fibroids in my uterus, I immediately asked for a total hysterectomy, including ovary removal. My attitude was 'just get rid of potential problems so I can sleep at night'.

    So when I was diagnosed with breast cancer, my immediate reaction was 'take them both off'. Nip this in the bud (so to speak). However, my BS convinced me that lumpectomy was the way to go, and so that's what I did .... that was THE BIG PLAN. It's just so confusing to have to come up with a new plan at this stage of he game.

    Leslie2016 - I agree with you 100%. How do you know? My radiation oncologist basically said that after chemo is done, we proceed with the radiation, with extra boosts, and then that's it. Down the road, we continue to monitor. If something appears on a mammogram or scan, it gets biopsied, and if there is a local recurrence, we deal with it. Except that who wants to have that hanging over their head if you can do something to avoid it?

    I understand that any surgeries should be done prior to radiation, as breast tissue does not heal as well after it has been irradiated. Which would mean that if I want a mastectomy, I need to decide fairly soon. Yikes ... I hate this. I'm so glad you replied to my post, though. I would love to stay in touch with you ... please let me know how things go for you, and if you get any new info.

    Barb

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  • Emily2008
    Emily2008 Member Posts: 605
    edited December 2016

    I had a lumpectomy when I was diagnosed with my first breast cancer back in 2008. Margins weren't clear, and it turns out there were 2 more spots. So altogether there were 2 spots of IDC and one of DCIS in left breast. When faced with the option of another lumpectomy and rads, I did lots of research, and decided to go with a mastectomy so that my reconstruction would be in good shape.

    I've recently been diagnosed with a recurrence, which is uncommon, and will end up having rads after all. BUT, if I were you, I would plan to have a mast first, then rads.

    Good luck!

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  • flannelette2
    flannelette2 Member Posts: 21
    edited December 2016

    I had clean margins and did chemo and rads anyway - I was stage 2b and had a huge tumour, a high grade of aggressive growth, clean margins but no nodes involved. I had a mx, no choice, really. My BS said that no nodes gave me the most hopeful scenario for the future - it was the most important indicator despite the size and aggressive growth rate of my tumour. I too would rest uneasy without clear margins. I'm sorry to say that when I look here at those who progressed to stage 4, often they are women who had positive nodes, starting at Stage 1 or 2. I did everything I could to rest easy. You have time to explore this, but my opinion is to go for an mx then rads, then hormone therapy. Best to you, it is not great to live life waiting for the other shoe to drop.

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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited December 2016

    Emily2008 and flannelette2:

    Thank you for your replies. You are confirming my feelings that mastectomy is the right way to go. Something I didn't mention previously is that, prior to starting chemo, scans showed that: 1) I have some heart weakness (LVEF was lower than average), and 2) there are some nodules on my lungs, which apparently are a non-issue. I know that the more radiation get, the more likely it can be to wind up with additional heart damage and lung damage down the road.

    I'm going to have to get radiation either way, because of my two positive nodes. However, a mastectomy would surely reduce the amount of radiation they would do to my tumour bed (i.e. all of those additional boosts the radiologist mentioned to "mop up the cells around the positive margins").

    I have an appointment to see my breast surgeon next Tuesday, and I discuss all of this with her. Since I still have more than 3 months of chemo to go (Taxol), I'm hoping there is lots of time to plan for surgery and then follow up with rads (and hormone therapy down the road!).

    You've really helped me with this. Thanks again!

    Barb

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