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Removing the “ good breast “ pros va cons

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kumphort
kumphort Member Posts: 10

hi.

So newly diagnosed with a party of tumors in my left breast. So that bad guy is coming off. Being offered to do the second one as well but on one hand seems sort of drastic.

Any advice on making this decision

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  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited February 2022
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    A lot depends on your individual risk for developing cancer again in the other breast. But if that's not a particular issue, some other things to consider are the size of your breast, whether it's an important part of your sex life, if your future may involve wanting to breastfeed, how much you hate wearing bras, and simply wanting to keep a breast instead of being completely flat.

    I kept the healthy breast and I don't regret it. But it's small and easy to match a prosthetic on the flat side, and I don't need to wear a bra when I'm not using the prosthetic (a knitted knocker). All my existing clothes still fit whether I'm wearing the knitted knocker or not.

    I'm in several Facebook groups for completely flat and half flat women. From what I've seen over the years, the women who are most unhappy with a single mastectomy are the ones whose remaining breast is very large. It's seems hard for them to find a prosthetic that matches and doesn't weigh a ton, and if they opt against wearing a prosthetic, the large breast makes clothing fit badly and pulls it in weird ways.

    Let me know if you want the names of the single boob Facebook groups! I think they will let you join if you just want to ask questions.

  • janewhite
    janewhite Member Posts: 49
    edited February 2022
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    I had my left breast removed due to multiple DCIS sites last August. I'm now planning to remove the other, partly to reduce my risk of cancer, partly because... I don't like being half flat. I'd rather be all flat.

  • kumphort
    kumphort Member Posts: 10
    edited February 2022
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    so is it mostly cosmetic reasons that you are taking off #2

    As a side note why didn’t you do reconstruction

  • moth
    moth Member Posts: 3,293
    edited February 2022
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    have you read through this thread yet? https://community.breastcancer.org/forum/91/topics...

    one thing that sometimes gets lost is that removing the other breast greatly reduces (but doesn't eliminate) the risk of a local recurrence, but has no effect on metastatic recurrence. The main post on that thread has links to a ton of studies & also questions to ask yourself as you decide what is right for you

    best wishes making these decisions. I know it's very hard

  • kumphort
    kumphort Member Posts: 10
    edited February 2022
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    thanks for the link. There are so many informative posts here it’s hard to find them. Alway great to read previous di

  • minustwo
    minustwo Member Posts: 13,190
    edited February 2022
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    kumphort - I got rid of them both right up front and 10 years later I'm still happy with my choice - for me. My decision wasn't based on looks - although that was a part - and I did do reconstruction. Mine was based on 30 years of multiple call backs every single time. Turned out to be a wise choice since they found "'stuff' in the "good" breast too. But as Parakeets mentioned - I certainly do miss the sexual stimulation of my nipples. It's a very personal decision.

  • nns121317
    nns121317 Member Posts: 116
    edited February 2022
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    I had both removed and immediately reconstructed even though I was only diagnosed with cancer on the left side. I have a substantial family history of cancer, so it seemed easier to just have both removed now. Pathology after the mastectomy indicated some questionable areas on the right, so probably a good thing it's gone. I had no special attachment to my breasts and no need for their functionality, so it was easy to let them go. I also appreciate how symmetrical they are now, more so than my natural breasts were, but that wasn't necessarily guaranteed.

  • lillyishere
    lillyishere Member Posts: 775
    edited February 2022
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    I removed the good breast because I got terrified of one breast that created cancer and I couldn't get convinced that the other one would not. I am glad I removed the "good" one because lots of LCIS was found. If cancer cells have escaped and they seed somewhere, is not under my control but removing the cancer factory (breast) was something I could control with surgery.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited February 2022
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    In general with this kind of decision, if you aren't sure what option to choose and there's one option that still leaves the other options open, take that one. In this case, that option would be to only remove the one breast. You can always go back later and remove the other one, but if you do it now and regret it, it's too late.

    That's one reason I kept mine. I knew if I didn't like it I could have it removed at any time. But once it's gone, it's gone forever.
  • exbrnxgrl
    exbrnxgrl Member Posts: 5,047
    edited February 2022
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    I think along the same lines, parakeet!

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited February 2022
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    I had a screening mammogram in June 2011. It was completely normal. Four months later I was diagnosed with stage III breast cancer. It sneaked up on me so hard and so fast, I wasn't willing to wait for the other shoe to drop. I wanted to reduce my cancer risk as much as I could.

    And I have a thing about symmetry. I was flat on one side for a year and it was a lot of no fun. Maybe if I'd had perky, cute breasts I would have felt differently. I didn't.

    The reconstruction surgery was arduous, but to me, but worth it. After the chemo, amputation, radiation burns...scary stuff...reconstruction felt hopeful. Something to put back what cancer had stolen.

    But we're all different, and we all approach this decision in our own ways.

  • JulesJewels
    JulesJewels Member Posts: 2
    edited February 2022
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    Hi all,

    Newly diagnosed. First post. I just got a call from my surgeon telling me that the tumor board reviewed my case and they see 3 more "satellites" that are suspicious. my origin IDC mass is about 2cm. She says these are between 4 and 6cm. They want to redo the MRI and probably do a biopsy directly after the MRI. If they are cancer, lumpectomy is off the table - which was the plan.

    Now I am wondering if I just go for a double mastectomy and start over. I do want reconstruction and would do a DIEP flap procedure. And if it does come back in the other breast I won't have the belly fat for it.

    My question is - what are the actually statistics on IDC reoccurring in the other breast? And I worry it could be there now - given how hard it has been for them to identify the initial mass and now these 3 which they are concerned about. I am large breasted and have not felt a thing so far - so I am totally dependent on a mammogram or other scan catching it. What are other's experience with IDC and reoccurrence in the "healthy" breast?

    Thanks! JJ

  • moth
    moth Member Posts: 3,293
    edited February 2022
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    JulesJewels, I suggest starting with this thread. Beesie has put together a whole bunch of studies and information to help evaluate the risk. There is a section specifically on contralateral risk.

    https://community.breastcancer.org/forum/91/topics...


  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2022
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    moth, thanks for sharing that.

    In addition to the studies I included in that thread, there is also information specific to the question of contralateral (opposite breast) risk. Breast cancer does not jump from one breast to the other, so there is virtually no risk of a contralateral recurrence. But, having had breast cancer once, our risk to be diagnosed again with a new primary (a separate distinct cancer, which could develop in either breast) is higher than the risk that an average woman might be diagnosed a first time.

    How high your risk is depends in part on personal/family breast and health history, such as if you carry a genetic mutation, if you have a strong family history of breast cancer, if you have high breast density (particularly post-menopausally). Overall, from my reading it appears that breast cancer patients have between a 60% to 100% increase in breast cancer risk (100% increase equating to double the risk) vs. the general population, although it appears that those with a triple negative first primary breast cancer (ER-/PR-/HER2-) have a higher risk than that.


    Risk of contralateral breast cancer according to first breast cancer characteristics among women in the USA, 1992–2016
    https://breast-cancer-research.biomedcentral.com/a...

    .

    Second Primary Breast Cancer Occurrence According to Hormone Receptor Status https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27209...

    .

    Estrogen receptor, progesterone receptor, and HER2-neu expression in first primary breast cancers and risk of second primary contralateral breast cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41444...

    .

    Hormone receptor status of a first primary breast cancer predicts contralateral breast cancer risk in the WECARE study populationhttps://breast-cancer-research.biomedcentral.com/a...

    .

    Contralateral Prophylactic Mastectomy: What Do We Know and What Do Our Patients Know? https://ascopubs.org/doi/10.1200/JCO.2010.33.4482

    .


    Because this risk of a second diagnosis remains with you for life, your total risk depends on your age. If you are young (and therefore have more years ahead of you in your expected natural lifetime), your risk will be significantly higher than someone who is much older. That said, for all women, our breast cancer risk peaks during our 60s and 70s. in my case, I had my first diagnosis at 49 and my second primary at 62.


  • JulesJewels
    JulesJewels Member Posts: 2
    edited February 2022
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    Thank you moth and Bessie - this is very helpful.

    I am post-mesopause and by breasts are large and very dense. I know the cancer can't jump - but am more concerned that if my body has done this once - it will do it again - AND I found nothing. All this was found through scans. Being hormone receptor positive and HR2 negative - the biggest concern I have is my body doing this again in the healthy breast. There are some studies coming out that indicate that if one is post-menopause radiation without hormone therapy makes very little difference in post menopausal women - in the affected breast - if it is a lumpectomy. But that doesn't address the "healthy breast." I have a lot of gastrointestinal issues and am celiac - so the possible side effects of hormone therapy worry me.

    Radiation, if it is a lumpectomy, will be done with the technology that uses your breath to trigger the radiation so the chest wall is as far away from the heart as possible. The mass is 13 cm in from my outer breast - so very deep.

    I have been reading that there is a procedure for maintaining sensation in the breasts that is a form of nerve implant that is done during reconstruction - which I am going to ask my plastic surgeon about. I have never had a reduction - in part - because I didn't want to lose sensation in that area of my body.

    My biopsy and MRI are next Monday - and I think at this point, the genetic testing will be a part of the labs if I these areas are cancer. The other question is whether this is the same cancer as what I already have been diagnosed with...to be determined.

    Trying to weigh the potential risk factors...and what makes the most sense while be the most preventive. Still new to this...it is a lot.

    JJ

  • XfitMama2
    XfitMama2 Member Posts: 18
    edited February 2022
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    Hi All,

    My surgeon explained to me that there are three reasons to get a preventative mastectomy: 1) to prevent risk of another cancer, which is based on all our individual receptor and gene data, 2) for symmetry, and 3) for peace of mind. And only we can know what's best for us, and if any of these three reasons rise to the threshold of getting this done. For me, peace of mind is as valuable as the reduction in risk.


    Sending positive vibes to everyone here. It's one of the hardest decisions we will ever make. And one of the few we have control over

  • moth
    moth Member Posts: 3,293
    edited February 2022
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    peace of mind is tricky though because since it doesn't reduce the risk of metastatic recurrence, does it really deliver on that?

  • XfitMama2
    XfitMama2 Member Posts: 18
    edited February 2022
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    moth, I agree. Definitely need to separate the risk reduction from the anxiety reduction bc they aren't one and the same. It's so tricky.

    For me, peace of mind isn't always about facts because you're absolutely right about distant recurrence risk. I guess for me, and I haven't made my surgical choice yet, peace of mind is about making sure I don't have regrets. And that part is so subjective and different for everyone.

  • lw422
    lw422 Member Posts: 1,410
    edited February 2022
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    I'll just toss this out there. I had a single Mx last August and had planned to have a prophylactic Mx this year of the remaining "D" cup. (Having one big breast is more annoying than I expected.) I have also had concerns about developing lymphedema since I had an ALND and 32 nodes removed.

    My surgeon assures me that there will be NO nodes removed for the prophylactic surgery but how can he be sure? I know there are posters on this very forum who have developed LE without a single node removed, so it happens. I suppose my fear of LE is overriding the desire to have symmetry, but that's just me.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2022
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    LW422, you sign on the dotted line before the surgery. If it says nothing about doing a SNB, then the surgeon will not be removing nodes. He can't just change his mind mid-surgery unless you give him permission. The only situation in which nodes should be removed is if there is a strong belief prior to surgery, perhaps based on an MRI, that you may have cancer in the prophylactic breast. In that case, you would have to agree in advance to the node removal. And if you do have cancer in the contralateral breast, you would need to have nodes removed on that side whether you have a lumpectomy or mastectomy (says the person who has had breast cancer in both breasts and has had nodes removed on both sides).

    That said, as you point out, it is possible to develop lymphedema just from the surgery alone, although that is quite rare.

    Not trying to convince you to have the PMX, but just offering up my thoughts on the points that you raised.


  • angelica74
    angelica74 Member Posts: 6
    edited February 2022
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    I had both breasts removed and went flat at the age of 44 for IDC in my right breast. I was so glad I had the "good" left breast removed, as atypical ductal hyperplasia was found, the dr said it would of been a second breast cancer eventually had I not removed both. No mammograms ever again is a huge benefit also! I have no regrets at all!

  • lw422
    lw422 Member Posts: 1,410
    edited February 2022
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    Hey Beesie and thanks for your comments. The surgeon says he'll not take nodes, but I don't know how he can be so certain. I don't know a lot about anatomy, but let's consider that surgeons seldom know for certain how many nodes they removed during a mastectomy until the pathology report is done. Plus, some people may have 7 nodes in the "first and second levels", but I had 32! From diagrams of the lymph system, I don't see how they can avoid all of the nodes in the Tail of Spence and under the breast tissue, but of course I'm no surgeon.

    Like everything else to do with breast cancer and treatment, it's always a crap shoot and we just have to make the best decision we can with what we know. (Which in my case isn't much.) I have to factor in that I am one who is almost as afraid of lymphedema as I am of cancer.