29 years old, diagnosed in April, lumpectomy re-excision surgery

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Bep
Bep Member Posts: 6
edited June 2020 in Surgery - Before, During, and After

Hi everyone, I am new to this forum.

I got diagnosed with invasive ductal carcinoma at the beginning of April just a couple weeks after my 29th bday.

Since then I've had my lumpectomy surgery for a 1.5cm tumor and one re-excision surgery. My pathology came back for my second surgery and my margins were still not clear, and a 2.5mm clump of cancerous cells was found. I'm going in for my last try at breast conserving surgery next week. Hoping for the best, but also worried obviously about the integrity of the rest of my breast. Want to hear from people who had one or more surgeries after lumpectomy and how everything worked out for them. It's hard not to think about the future and the possibility of recurrence later down the line but I'm trying to remain hopeful and also live in the moment, because I can't think too far ahead without dealing with what's in front of me.

I'll also be starting chemo at some point: Perjeta, Herceptin, Taxotere and Carboplatin every 3 weeks for total of 6. And would love some feedback and advice. (I'll also post this on the chemo topic page) I've read some things about permanent alopecia after Taxotere and that's definitely a worrying side effect. Would love to hear your experiences. Thanks all xoxo

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  • Betrayal
    Betrayal Member Posts: 1,374
    edited June 2020

    Hi Bep:

    Sorry you had to join this club at such a young age. It would help if you could list your diagnosis under your entry including information on which breast, location in breast, etc.. I had a lumpectomy with sentinel node bx on my left breast and did not get clear margins on the first attempt. This was followed by a re-excision surgery where the margins were to say, at the least, marginal with no cancer cells at the very edge so it was nominally called negative. Since I was having whole breast radiation, the RO increased the number and number of grays I received in the boost.

    So the questions you need answers for are:

    1. How large are your breasts currently and how much volume will be removed by yet a third attempt at excision? Will your breasts appear different and what difference in appearance will be acceptable to you?

    2. If you are having radiation, talk to the RO about what breast volume loss will this cause? Remember radiation causes fibrosis of the breast tissue so there can be an appreciable difference in breast size due to shrinkage and it does have an impact on whether reconstruction can be performed. Unfortunately due to breast volume loss and fibrosis, I was not a candidate for reconstruction. My RO said the wait for reconstruction was 18 months post -radiation to allow the tissue to heal and circulation to return. Different RO's have different opinions so take that in to consideration as well.

    3. If you plan on reconstruction, talk to a PS now as to what options are available to you. I wish I had consulted one sooner. My decisions would have been different with more information in advance.

    I was hopeful, did not get the aesthetic outcome I wanted but each of us has a different experience with lumpectomies, re-excisions and other therapeutic modalities. It is best to be informed so ask questions and make decisions based on what you learn. I wish you the outome you seek and offer a ((hug)). This is a tough time for you but it will get better.

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  • mightlybird01
    mightlybird01 Member Posts: 217
    edited June 2020

    Since you are so young, I would not rush into the second re-excision, but wait for results on genetic testing, if not already done. At least BRCA1 and 2. Secondly, I would potentially ask for an MRI, which will allow a much better view what is going on in that breast. I was told that the surgeon can't really see what is tumor and what is normal tissue, and pathologists don't want them to search around, but just cut out a specified piece of breast tissue which they can orient and analyze. So there is no guarantee that this will be it for you. Thirdly, if you do another re-excision you have to wait another 4 weeks before you can start chemo. Depending on how aggressive your tumor is, that may not be so great.

    Usually, nowadays, chemo is often started before surgery if the goal is to conserve the breast. With three surgeries, chances are that you will end up with one much smaller breast, which you will either have to live with or get some form of reconstruction. If you do need reconstruction, you may consider the mastectomy, especially if BRCA1 or 2 positive instead. Mastectomy would only happen after chemo and you could start chemo asap.


    Is your treatment taking place in a major cancer center?


    Good luck with all the decisions! I know it is very hard to make them all.


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    If you are HER2+, chemo TCHP is almost always neoadjuvant - before surgery. Maybe it's a good time to do the chemo now and hold off on a 3rd surgery to see the results.

    I agree with mightybird - are you at a major cancer center or an NCI facility? If not, maybe you need a second opinion. But if you are HER2+, my MO said it was really important to get the chemo going ASAP.

    Sure, hair loss could be permanent but it's not by any means the majority

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    Deleting duplicate post

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    Here is a link to a really good chemo thread. You might also want to check out some HER2+ threads.

    https://community.breastcancer.org/forum/69/topics...


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  • Bep
    Bep Member Posts: 6
    edited June 2020

    Thanks for the response!

    I did get my genetic tests back negative for both BRCA and had an MRI prior to my first surgery that did not show anything else visible in my chest. So I was hoping the lumpectomy would have been smooth sailing but obviously I've hit a few roadblocks here

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  • Bep
    Bep Member Posts: 6
    edited June 2020

    Also I'm having treatment at Scripps in San Diego so MD Anderson is the cancer center I believe

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  • Bep
    Bep Member Posts: 6
    edited June 2020

    Sorry my answer is 3 different posts haha I am getting used to this forum.

    It's been kind of overwhelming just having this influx of information thats continually changing for the last 2.5 months.

    I was told I'm stage 1b, the tumor was in my left breast, and they did a lymph node dissection that came back positive for some micromestases. Prior to this I was a pretty standard C cup breast size. I will be thinking about reconstruction perhaps and will reach out to my RO about it, my medical oncologist was saying it would be something to do later down the line. I have been trying to get multiple opinions but it's difficult when sometimes I don't fully understand the intricacies of whats being told to me but I have a running list of questions to discuss with my Dr. next week.

    I appreciate all the feedback and personal experience, thank you ♥

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  • DATNY
    DATNY Member Posts: 358
    edited June 2020

    Have you ever been tested for vitamin D levels? Vitamin D is an immunomodulator. I attribute my hormone negative, her2 positive cancer to low level of vitamin D throughout the years.

    Anyhow you are young and the chemo won't be tough on you. Taxotere may lead to permanent hair loss to some, but only for a small percentage of women. My eyebrows and eyelashes did not fully return after it. Hair is ok.

    During chemo I did intermittent fasting and never needed any nausea medication. If you are interested check it out, look for Dr. Valter Longo. Neulesta gave me horrible bone pain, but I changed to Neupogen and everything was all right.

    Treatment won't pose great challenges for you, but you are very young. I chose to have double mastectomy and I was 44. I was thinking that whatever made my tissue to malfunction, may do it again. And her2+ cancer is very sneaky, it starts to spread even before a tumor can be seen on imaging. Luckly the herceptin and perjeta are very effective.

    Wishing you the best!


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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2020

    Bep, I just wanted to tell you that I finished Carboplatin, Taxotere and Herceptin 11 years ago and I haven't had any lingering effects. Chemo was very doable.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    Bep, I'm glad you are at an NCI cancer center. I think young women benefit from that expertise, since our breast cancers often behave differently. I hope the breast conserving surgery option will work for you too. My experience having done both a lumpectomy and a mastectomy, is that I wish I had been able to keep my breast. There are also studies that also show quality of life for young women is generally better after a lumpectomy. In any case, I hope the re-excision surgery goes well. Also, there are many options for lumpectomy repair. BCO has a good page about this, in case you haven't seen it yet: https://www.breastcancer.org/treatment/surgery/reconstruction/types/lumpectomy

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    BEP ->>>they did a lymph node dissection that came back positive for some micromestases<<< Was that SNB? (serial node biopsy) Does that mean your doc is no longer recommending lumpectomy?

    if you're not comfortable with your docs, by all means get a second opinion. Otherwise personally I would get started on chemo and worry about the surgery after you see how much the chemo shrinks the tumor(s)

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