Any unilateral mastectomy regrets?

Options
patty101014
patty101014 Member Posts: 53

When I was first diagnosed, I was ready to have a bilateral mastectomy ASAP. Or I thought i was. Instead I had neoadjuvant chemotherapy and a few months to cool my jets. I am really struggling now on whether to go with unilateral or bilateral. I am BRCA negative. I will be having radiation due to close proximity (if not invasion) to my pectoralis and skin tissue. I am clinically staged at 2b by BS and MO. the rad Onc thinks this is a mistake and puts meat 3b.

I have triple negative idc grade 3 which appears to have started at approx 3.6 cm on mri but felt much larger on exam by every doc that examined me. They all estimate between 5&6.

I am looking to hear from women who went with unilateral and whether you regretted the decision later and for what reasons.

Thanks in advance!

Comments

  • Ariom
    Ariom Member Posts: 6,197
    edited February 2015

    Hello Patty, I had a very different Dx to you, but I am a Uni and haven't regretted my decision, for a moment.

    I actually never considered removing my good breast. For me, I just couldn't do it, in good conscience, so I still have a fully functioning, normal breast on the left and I wear a breast form, on the right.

    It took a little time to find what worked for me, both in clothing and in breast forms, but now, 2 years out, I barely think about it any more, I am completely comfortable with it.

    Like everything on this journey, it is a very personal decision. Go with your gut feeling, you will know what feels right for you, don't let anyone sway you with their opinion, of what you should do. Take your time and weigh up the pros and cons for you and go from there.

    There will be others along, who will share their experiences with you. I wish you all the best!

  • Mich71
    Mich71 Member Posts: 45
    edited February 2015

    Hi Patty,

    I too struggled with Uni vs bilateral decision and initially thought I wanted both gone. I do not regret Uni for the fact I find myself grateful for soreness / healing on one side only. Also delayed reconstruction for a year to get a true picture of what I wanted to do. I feel for you trying to make this decision during such a stressful time. Hoping others can give you some comforting insight on possible regrets

  • patty101014
    patty101014 Member Posts: 53
    edited February 2015

    Ariom and Mich, thank you both for sharing your feelings around your decisions with me. I appreciate it very much. I have been in the mindset of bilateral from the start but feel pressure from my doctors and father to not do so. I am grateful gor you and this boar

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited February 2015

    Hi Patty - This feedback may not be what you're seeking but I thought I'd provide another perspective. I chose to have bilateral for the simple reason that it would reduce my risk of a local recurrence. Even though it was explained to me that it does nothing to reduce regional or systemic recurrence I simply felt better with my decision. With that said, my first attempt at reconstruction failed and I just completed surgery # 6 out of a likely 10. That's a lot to go through to get boobs back. I'm not finished with my surgeries yet but at this time I am very happy with my decision. I appreciate the symmetry and my PS has done a nice job with the aesthetics. I don't have any discomfort and I have full ROM. My MO was most helpful in assisting me with my decision. Essentially, he asked me to consider how I would feel with each outcome. This was the right decision for me. I have not regretted it for one moment. Likewise, the views of the other posters are also valid. I wish you well in finding the path that brings you comfort.

  • Ariom
    Ariom Member Posts: 6,197
    edited February 2015

    You're welcome Patty, all the best with your decision.

  • debiann
    debiann Member Posts: 1,200
    edited February 2015

    I considered uni, which both my BS and PS were fine with but they also said I would get a better symmetry with a bi. I was having diep recon. I don't think they could make my new breast look as saggy as my natural breast, lol. The PS did say he could do a lift on the natural side, but I think for me trying to match the two would have been a lot more work than getting the bmx so thats whatI went with. I ended up with 2 very full, round breasts that match.

  • Novna70
    Novna70 Member Posts: 3
    edited March 2015

    Hi Patty,

    I just went thru a uni on Feb. 5th. I never considered having both breasts removed, until some friends asked me why not? I did some research, talked several times with my surgeon and decided to do only the affected side. My recovery has been way faster than I expected, only dealing with one side makes everything easier. I will deal with the issue of reconstruction way down the road. Taking it one day at a time, doing physiotherapy and planning to go for a fitting for a breast prosthesis next week. Actually, I am excited about it! I know it may sound weird, but I am so happy and relieved about not having the tumor anymore, that I am very ready to carry on with my life, my new life as a cancer fighter and survivor. Best of luck with your decision

  • besa
    besa Member Posts: 1,088
    edited March 2015

    I handled this differently- I had a unilateral mastectomy and DIEP reconstruction when I was diagnosed with multifocal bc. Also had work on my "good" side for symmetry. At that time neither my bs or mo talked about bilateral. I wasn't even thinking about it. It was, of course, a very stressful time. I had a lot of problems with my DIEP reconstruction and bounced through multiple surgeries.

    I was researching things all the while during those 4 years (after being diagnosed) and also changed a number of my physicians. I understood I had dense tissue and mammography didn't work well for me. I was being followed very carefully for a new primary alternating through mammograms, MRI's and manual exams. I had a family history of bc (though BRCA negative) and was considered high risk for another primary.

    So 4 years after my initial diagnosis I finally decided on a contralateral ns prophylactic mastectomy with sGAP reconstruction. All of my current doctors except one told me that if they were in my shoes they would make the exact same decision. The one physician who told me she personally would not have the surgery also told me that if I made the "no surgery" choice I would have to be willing to go through treatment again.... I was concerned about another primary and wanted to reduce the chance of that happening. I had the time to really research the prophylactic mastectomy and reconstruction and found awesome doctors with a beautiful outcome. So for me absolutely no regrets - just a delayed choice that I am very happy with.

    These are such personal decisions. There is,of course, no right or wrong answer to this. Just what is right for you.

  • sunshinegal
    sunshinegal Member Posts: 209
    edited March 2015

    I had a uni mx 4+ years ago. I put off any kind of surgery on the good side b/c we wanted to have kids and I wanted to try to breastfeed. Now we've had our two children and it's time for me to decide what to do on the other side (I'm definitely not symmetrical right now, so it's either reduction + lift or prophy mx + reconstruction).

    Consider that if you feel conflicted about it, you might be better off doing uni now, and then weighing your options and choosing to do pMx on other side down the line. You can't "undo" it if you do double Mx now and have regrets.


  • Survivor63
    Survivor63 Member Posts: 1
    edited April 2015

    I just had my uni Mx last week, with no regrets. I'm still recuperating, with so much discomfort. I still have my JP draining approximately 30 ml/day. I will see my oncologist in two weeks. Still anxiously waiting what adjuvant treatment I'm going to have.

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Hi Survivor63, and welcome to BC.org. We're sorry for all you're going through, but we're so very glad you've found and joined our community.

    While you wait for your next appointment with your doctor, and in addition to your surgeon's instructions, here are some general guidelines to follow at home after mastectomy: http://www.breastcancer.org/treatment/surgery/mast...

    Best wishes for a speedy and complete recovery!

    The Mods

  • Luckydog42
    Luckydog42 Member Posts: 51
    edited April 2015

    I had a UMX and only regret it a little. My healthy breast is dense, so now I worry about problems in the future. I don't ever want to go through this experience again!

    But, my surgeon had warned me that a double mastectomy is more than twice the pain. Recovery for my UMX was not so bad because I had one side that I could still use. I would have been completely helpless during my recovery for a BMX.

    I'm also 43 and do not plan on wearing a bikini. I just want to look good in a t-shirt and bra. So, I don't care if my breasts look a little different from one another when I'm naked.

  • Jenphil86
    Jenphil86 Member Posts: 11
    edited August 2015

    I did a unilateral mx and now I regret it. I'm in the middle of chemo for three months and then herceptin for an additional 9 months. I really wish I would have done a bmx in the beginning. I never expected to be overwhelmed with worry. Does anyone know if insurance will pay for another surgery

  • ReneeinOH
    ReneeinOH Member Posts: 511
    edited August 2015

    I had a uni, and two years out, do not regret it at all. Given my stats, my BS was not concerned about another primary showing up in the healthy breast. I had an implant, and lift on the other side. I have symmetry, with and without clothing, and wear two piece bathing suits. I have feeling in the natural breast, which I am glad to have.

    Nothing is simple, or certain. There are pros and cons to every choice. I had a great PS who was able to do the job right. I have read others' stories who have had bad outcomes from breast reconstruction of a BMX.

  • KayaRose
    KayaRose Member Posts: 183
    edited August 2015

    I had a uni of my left breast on March 2nd. I wasn't given the option of having both removed. I wanted both removed but was told by both the BS and MO that it is not recommended. Their main concern was that I could develop an infection in the good breast that would delay radiation of the cancer side (i had chemo prior to surgery). At my last MO appointment I brought up the subject of removing the right breast again and now she tells me that Medicare won't pay for the surgery because there is no cancer in that breast. I really wanted both removed and still do. However, seems it won't happen unless I develop more cancer.

  • suenova
    suenova Member Posts: 1
    edited January 2018

    Hi. I just had a unilateral mastectomy 2 wks ago. Now I'm thinking if I have done a mistake by not doing bilateral mastectomy. Doctors, especially surgeons are not very eager to give advices, so I'm on my own. Do I have to do radiation with unilateral surgery? I had DCIS, 1.5 CM

  • Canela
    Canela Member Posts: 26
    edited January 2018

    I had a uni in July 2017 and while I don't regret it, it's something I'm still occasionally second guessing even though my surgeon and MO recommended the uni. Part of it is that my genetic testing revealed a variant of unknown significance. Someone I know who had bc 8 years ago was recently told that her VUS is now considered pathological, and part of me wants to just get stuff out of the way now rather than have to deal with more urgent prophylactic or treatment decisions later. Also, I'm 37 so I have a long time to worry about getting bc again. At the same time I like the easier recovering of a uni.

    I just don't know. Maybe I'll feel better once I have enough distance from treatment.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Hi Suenova. I had a lumpectomy so can't be of much practical help, but I am sorry you feel you're in this alone. Can you get an appointment with a medical oncologist at a local hospital perhaps? I suspect hormone therapy is a more likely recommendation than radiation, but you need a good specialist to help you figure it out.

  • swg
    swg Member Posts: 461
    edited January 2018

    I just had my unilateral nov. 28.

    No regrets whatsoever! In fact, I feel great. And I'm happy with how my breast turned out. I have a tissue expander right now. I got one fill, and I think that might be all I need, as I have small breasts. I really thought it wouldn't look so great...and yeah, it's NOT the same as my original, natural breast, but it looks pretty dang good! And I'm a model, so I'm very picky.

    I've shown it to people and they're amazed at how good it looks.

    (My surgeon did nipple and skin-sparing surgery, btw.)

  • swg
    swg Member Posts: 461
    edited January 2018

    suenova I doubt you will need radiation since you're technically Stage 1..if your surgeon got all your cancer out.

  • swg
    swg Member Posts: 461
    edited January 2018

    ReneeinOH

    That is one thing that makes me SO glad I made this decision--the feeling in my healthy breast!!!! It took me a while to get used to the lack of feeling in the right breast, and that's one thing that still trips me out sometimes.

    I had a scratch from surgery and couldn't feel it. It was so weird to me. It seems like you could really hurt yourself--if you injure your breast and can't feel it.

    Plus, sexually, it's been great to still have feeling in one breast. I can't emphasize that enough.

Categories