Opting for double mastectomy

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hendymom
hendymom Member Posts: 4

Hello. I'm new the group and have a single mastectomy scheduled for 5/1. I am waiting for the genetic testing to come back, and have yet to meet with the plastic surgeon (4/4). Until then, my brain is swimming! Has anyone here opted for a double mastectomy, despite being negative for BRCA? My breast surgeon says she doesn't "push" for both, which I can understand to a degree....I don't want to ask for trouble; however, I'm wondering if any of you can offer some insight.

Comments

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2019

    Just my personal experience: I had a single mastectomy, and I'm glad I still have an "unaffected" side. The physical and emotional repercussions of the mastectomy bother me.

    Also, you should ask if your surgeon will want to take any lymph nodes from the prophylactic side... sometimes they want to.

    You may also consider doing one side and seeing how you do with it. You can always do the other side later. Some oncologists even prefer this because then you have less to heal from and you can get into chemo or radiation (if needed) more quickly.

    My aunt, on the other hand, did both sides and is happy with her decision. She did not need any additional treatment though. Whatever you decide, I'm wishing you the best. 😊

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited March 2019

    I opted for bmx 7 years ago, haven’t regretted it at all. I told surgeon then I wasn’t doing this again. He said recurrence % was very low, but didn’t hassle me and did it. I had 7 good years, have axilla resection next week on previous non ca side. No guarantees in this ride, it’s a very personal decision only you can make.

  • Tinkthetonk
    Tinkthetonk Member Posts: 9
    edited March 2019

    I just had a BMX at the end of January. I opted for that due to the fact that AC chemo put me in the hospital three times and made life pretty miserable. I decided I wasn't going through it again. I did wrestle with just doing the one side, but chemo was so nasty. I wish you the best of luck and only you can determine what will work for you.

  • secondchancetoo
    secondchancetoo Member Posts: 50
    edited March 2019

    Coming from a little different perspective, I opted for a single mastectomy, supposedly with a low chance of another breast cancer in my contra lateral breast. Well, four and a half years later that's exactly what I got! Essentially triple negative as well. What a blow....I was so shocked. I, too wanted to keep my remaining, what I presumed was, a healthy, breast.

    If I had to do it over, I would have opted for that double mastectomy as my breast surgeon suggested...." for women who don't want to be back here".

    It is a crapshoot, we all are different. Thought I would share what happened to me personally. My best to you whatever you decide is right for you

  • Imdtm23
    Imdtm23 Member Posts: 27
    edited March 2019

    I had a BMX with immediate diepflap reconstruction in December. My BS gave me all the options. I felt like the BMX was overkill. Then i had a very bad experience with MRI and MRI biopsy. I had to have MRI guided biopsy done on both breast at same time. I didnt want to ever do that again. Plus I always had very large breast (38G). I told my PS that he could have them i was done with them. Only being 3 months out. I dont regret it.

  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited March 2019

    Hendy, I am BRCA negative but this is my second rodeo, so to speak. Lost half a breast in 97 and I think in an odd way it helped prepare me for this. I knew I did not want reconstruction, so that is a big factor. While I understand this is not for everyone, for me symmetry mattered, a lot. The idea of one hanging there seemed very deforming, and it's not like I hadn't lived with a good bit of deformity for over twenty years (had to wear a prosthetic all those years). For what it's worth, I do have two friends who had single mastectomies and now wish they'd gone for both. Their reasoning is less about symmetry and more about the constant worry over mammograms and cancer in the other breast.

    I did not do reconstruction, but seeing photos beforehand helped. There are photos online of women who've done reconstruction and those who haven't--and I would be happy to pm you photos of my chest if it would help you in any way. The bottom line is we all make different choices--it really has to be about what makes you feel most comfortable.

  • el7277
    el7277 Member Posts: 64
    edited March 2019

    I met with my breast surgeon last week and the plastic surgeon today...bye bye to both for me. My BS supports my decision as she knows I will constantly be wondering if if something is growing. I have my last chemo April 4th and my surgery should be a month later. I am stage 1 IDC grade 2, genetic counseling proved negative but with my family history my surgeon says there is a gene...they just haven't found it yet. The panels they test for change often as they discover mutations often. It is such a personal decision...good luck to all!


  • Wigging2000
    Wigging2000 Member Posts: 295
    edited March 2019

    I was BRCA negative with IDC on my left side. I wanted no part of the diagnosis “game” ever again and knew almost immediately that I wanted a BMX. I asked for it, and my doctors were supportive (my second team of doctors, that is).

    I am almost 4 months out now and I don’t have regrets, although I do miss my breasts. I have implants which actually look great in clothes, but the naked factor is a whole other story for me mentally. Someday I might get nipple reconstruction/tattoos but right now I want to enjoy life!

    I think if I hadn’t gone for the BMX I would be in a constant state of worry. I know my cancer can come back but I felt like I did everything I could to prevent a recurrence. It is such a personal thing and has to be based on so many factors!


  • Runrcrb
    Runrcrb Member Posts: 577
    edited March 2019

    despite my breast surgeon suggestion double I had a unilateral mastectomy and have not had second thoughts. There are many considerations and you should be comfortable with your decision. Talk to your plastic surgeon about reconstruction options. My PS helped me seal the deal for unilateral. For me, a double didn’t change the recurrence risk or my other treatments (chemo and radiation). The bilateral mx does double your risk of surgical complications, both the mastectomy and reconstruction. Think about how you would feel if the reconstruction on the non-cancer side failed. It is a personal decision and one you should not rush.

  • Irishlove
    Irishlove Member Posts: 82
    edited March 2019

    I'm considering removing my other breast. I'm almost 4 weeks post-mastectomy surgery. One of the questions I can't find an answer to is, will I still need tamoxifen therapy? What would the statistical recurrence rate be if I choose not to take tamoxifen and removed the healthy breast? Next appt. isn't till the end of April and I would like to have as much info available to make this decision as the surgeon was opposed to removing a healthy breast. Family history is overwhelming breast cancer diagnosed.

  • applejuice
    applejuice Member Posts: 63
    edited March 2019

    I opted for BMX to reduce the chances of recurrence, or new cancer on the other breast. BRCA negative, but I am still happy I choose to remove both. It also helped to decide that BMX, involved no radiation in my case and no chemotherapy, only hormone therapy. Your case might be different based on tumor size, lymph nodes or other factors.

  • SuQu31
    SuQu31 Member Posts: 160
    edited March 2019

    I had BMX with no sign of cancer in my other breast. I knew I never wanted to go through this again, if possible. (I am aware that there is a small risk of recurrence or another cancer). I am a worrier, and I wanted to know that I had been as aggressive as possible. I did not have genetic testing as I have no family history. I do not regret my decision at all.

  • helenlouise
    helenlouise Member Posts: 420
    edited March 2019
    I too opted for BMX prophylactic on the uneffected side. Surgeon didn't want to do it because of potential problems on the unaffected side that could have delayed radiation. Her comments were.: my job is to cure you, there is no increased survival benefit from BMX and the risk of complications is increased. She sent me away to think about it but I had already decided. I did not want to do another op down the track and having one breast meant I would be forced to use prosthetics ASAP or be obviously lopsided.

    I had my BMX in July last year and was glad I wasn't trying to wear a prosthetics on my chest. I was sore for sometime. I now wear a Lorna Jane pamy top that has small inserts and gives me the appearance of very small breasts. Sometime I go without altogether. I don't think I will ever use a real prosthesis.

    It is weird not having breasts but more so because I have some flesh left on my uneffected side and almost a dent on my effected side. Not enough to notice in the pamy but obvious if you look at me naked. A revision is an option down the track but I doubt I'll do that either.

    As said it is a very personal decision that only you can make. Do not let the doctors talk you into anything you are not comfortable with.

    At my time in life the less anaesthetic I am subject to the better.

    Good luck and best wishes xx
  • pupmom
    pupmom Member Posts: 5,068
    edited March 2019

    Irishlove, you would definitely need tamoxifen. Removing breasts just helps prevent a local recurrence. Tamoxifen and Als are systemic treatments, which starve any stray cancer cells from setting up shop somewhere else in your body. And yes, even with early stage and no positive nodes, those cells can escape from the breast.

  • hendymom
    hendymom Member Posts: 4
    edited March 2019

    I'm overwhelmed by your responses. Thank you to those who took the time to share your thoughts/experience. I understand it's a personal decision......but your insight helps direct my questioning for the PS. Thank you, thank you, thank you!

  • wanderweg
    wanderweg Member Posts: 549
    edited March 2019

    It's a tough call, that's for sure. I opted for a BMX because I waned off the mammogram/call back/biopsy merry-go-round. My mother had breast cancer and even though I tested negative for BRCA and the other known genes, they are discovering new genetic links all the time. I just didn't want to take the chance. And although I sometimes wonder if reconstruction was the right choice, I don't have any regrets about the BMX. But I know others who are happy they did a single.

  • Lindzfay
    Lindzfay Member Posts: 16
    edited March 2019

    I ended up doing the other side 6 weeks later for a couple of reasons. For 1 I found out the day after my 1st one that I have a chek2 genenetic mutation. Also I was only 40 and was told the risk of getting another breast cancer went up 1.5% each year. If I had the results before my 1st surgery I would have done both but I can't say doing them 6 weeks apart was a bad thing. It was nice having a good side but definitely extended the process. My surgeon and I knew going in we may go back to do the other and she was fine with whatever process worked for me.

  • SSInUK
    SSInUK Member Posts: 245
    edited April 2019

    I had single mx and have just had a scare about a recurrence in the reconstructed breast - others have had this so we need to be aware even mx is sadly no guarantee. I feel that I was not properly prepared for mx - noone tells you what it feels like to have a recon boob - how can they. Least of al do yiur surgeons know. My PS was all about look and never talked about what it FELT like after the surgery. I had no choice in the mx I had a big tumour so I don’t regret it but I do hate how it feels and looks. Loss of sensation is - well - a loss. My regret is that I was slightly pressured by the Plastic surgeon into a lift in the other side for symmetry. That was needless surgery and I mourn the changes and loss of feeling in a natural healthy breast. Just my POV - many feel differentky

  • Margot62
    Margot62 Member Posts: 31
    edited April 2019

    SSinUK,

    I read your post with interest as on the 22nd, I’m having a unilateral mx. I am wondering what it feels like to have one healthy and one reconstructed breast.

    Also, you mentioned you’d avoid the lift on the healthy breast. You said you had no feeling in your breast after the lift? I wasn’t aware that happened. Perhaps I should opt out of the lift? At this point, I don’t care about how I look in a shirt! It’s all about minimizing procedures and saving my life!

    Am anxious to hear more from you.



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