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Bilateral versus Unilateral Mastectomy!! Please help me decide

cancerian
cancerian Member Posts: 11
edited March 2023 in Just Diagnosed

Please help! I am unable to decide between bilateral and unilateral Mastectomy. I am flip flopping between the decision everyday. It is an extremely hard decision and one that is completely irreversible. While i want peace of mind, i am also unsure if i want a numb chest for the rest of my life and not be able to feel hugs:(

Diagnosis- Right Breast -DCIS stage 0 with possible invasion. Grade 1 and 2. ER PR positive.

Comments

  • mandy23
    mandy23 Member Posts: 92

    Cancerian -

    First of all, know that there is no 'right' answer. Once you make a decision, that is the right answer no matter what happens in the future.

    I went with a unilateral mastectomy in 2003 after being diagnosed with DCIS and very small ILC. I later had a Tram flap reconstruction and a reduction of the other side for symmetry. At the time, I thought long and hard about doing a bilateral, especially since ILC is more likely to occur in the other breast once it shows up in one breast. However, I was just too overwhelmed to deal with removing both breasts at the time and I went with one.

    19 years later, in October 2022 I was diagnosed with IDC in the 'good' breast. Do I regret not having it removed the first time? Nope. BC may never have showed up again and I got to keep that breast for 19 years. This time I again had a mastectomy and immediate Lat Flap reconstruction.

    Do know that if you are considering reconstruction and doing a Diep flap (like my Tram flap), you can only do that once, so if you only do one, you will have to do some other type of reconstruction if you eventually remove the other breast --- either prophylatically or for bc. That being said, some people don't have enough fat for both breasts. So, do discuss your options with a good plastic surgeon.

    It's a very personal decision that you get to make and when you make it, it will be the right one.

    Best of luck to you!

  • abigailj
    abigailj Member Posts: 100

    I had ILC (large area affected) on left side and IDC (small, single site) and was given a lot of surgery options. I was offered (1) lumpectomies for both followed by radiation for both sides but left side would have been a large excision area so very disfiguring; (2) unilateral mastectomy on left either with or without reconstruction plus lumpectomy + radiation on right; (3) bi-lateral mastectomy either with or without reconstruction (either implants or DIEP flap if I chose recon). I knew I wanted recon and was a good candidate for DIEP flap reconstruction so had BMX with immediate DIEP reconstruction - as mandy23 points out, you can only have DIEP once and I had enough fat to get both sides just about to the same size so opted for that. There was thankfully no need for radiation (the lymph nodes looked ok on the scans and were confirmed clear after they removed and checked the sentinel nodes during the surgery). If I had only the IDC on one side I definitely would have gone for a lumpectomy with radiation. My surgery also included nerve grafting and I do have a good deal of skin sensation. You'll want to carefully explore all your options and decide what what would work best for you - it is obviously a very personal choice.

  • beach2beach
    beach2beach Member Posts: 245

    Hi,

    Chiming in here and agreeing with the posters above ..the decision is a very personal one. I was dx in right breast but decided to do a double since I was always so anxious with mammos etc and didn’t want to go through it. I did direct to implants. As for numbness..not sure what you mean. Sure my foobs are less sensitive but I feel itches and scratch them on my boob. I feel hugs I even have some sensitivity back in the nipples. Everyone is different. Gather up all your info,,ask all the questions you think of and . Go with your gut.

  • jh40
    jh40 Member Posts: 139

    Single mastectomy here, no reconstruction. My remaining breast is small, as was the one that is gone, so it’s not incredibly obvious at first glanc.

    I had no pain after surgery at all. Recovery was painless and much easier then I expected. I have some numbness mostly around the scar area now. Feeling did return for me around my collar bone and below the incision line.

    I considered bilateral for weeks before finally settling on a single after being told it would not be statistically significant to my overall survival chances. My oncologist encouraged me to remain flat when I told him my plans to, and revealed that he is a big supporter of that route. That meant a lot to me at the time. Still does.

    It’s a personal decision whatever you decide.

  • msphil
    msphil Member Posts: 184
    edited March 2023

    hello sweetie some of my story for Inspiration we were planning our 2nd marriages to man I prayed for..i found the lump in the shower working in medical field first in O R for 15 yrs as a Instrument tech then in your city workers clinic had my own office in Beds medical records so I knew the steps. Got my biopsy and saw my colleagues eyes and I knew. Engaged to man of my dreams now oncologist recommended mastectomy didn't want to go into new marriage with one breast could just remove lump yes but may reoccur. So my doctor and my Fiance at time said do mastectomy. I did and Praise God this year a 29 ur Survivor. And our 29th wedding Anniversary. Hope this helps. msphil idc stage 0/3 nodes 3 mo chemo before and after L mast got married then 7wks rads and 5 yrs on Tamoxifen. Hope Positivity now Husband and Faith family friends. Hang in there.

  • Carolina59
    Carolina59 Member Posts: 27
    edited March 2023

    I haven't been here on bc.org in ages, but this site saved my sanity 16 years ago. I was diagnosed with 10 cm (yes, cm) DCIS in right breast while breastfeeding. I thought it was a blocked milk duct that wouldn't go away, and (male) ob and (male) radiologist dismissed my concerns for 9 months. My initial plan was to have unilateral MX, but then found multi-focal IDC in left breast, so decision made for BMX. I have never regretted it. I was also triple positive. And I had a baby and felt I could take no chances with recurrence. Back then they put implants under the muscle (so painful!) and tried to match my original breasts (always too big for my frame) and I didn't know any better. I recently had both replaced with MUCH smaller implants, over the muscle, and I am so much more comfortable. They feel like natural breasts rather than the hard, inflated balloons they felt like for so many years. They don't feel numb, and I can feel hugs! I am grateful for every moment I remain healthy and with my family. (And my little one who I was nursing back then is 18 and going off to college in the fall!)

    I am back on bc.org today because my next door neighbor and friend, who was diagnosed with triple+ BC the same year as me, had a recurrence in her bones 5 years ago, has been receiving tx since, but three nights ago she had a seizure--a large malignant brain tumor was found, and she will have brain surgery on Tuesday. I am heartbroken for her and her family. It's a crap shoot. She had a unilateral MX. And though BC did not metastasize in her breast, I always wonder about it. I have another friend who had a recurrence this year--13 years after a lumpectomy, chemo, radiation. After surgery, she is going through chemo again.

    This is my very long way of saying my own motto is "longevity over breasts" though it's a very hard decision no matter what. Best wishes to all.

  • Carolina59
    Carolina59 Member Posts: 27
    edited March 2023

    I haven't been here on bc.org in ages, but this site saved my sanity 16 years ago. I was diagnosed with 10 cm (yes, cm) DCIS and multi-focal IDC in right breast while breastfeeding. I thought it was a blocked milk duct that wouldn't go away, and (male) ob and (male) radiologist dismissed my concerns for 9 months. My initial plan was to have unilateral MX, but then found DCIS in left breast, so decision made for BMX. I have never regretted it. I was also triple positive. And I had a baby and felt I could take no chances with recurrence. Back then they put implants under the muscle (so painful!) and tried to match my original breasts (always too big for my frame) and I didn't know any better. I recently had both replaced with MUCH smaller implants, over the muscle, and I am so much more comfortable. They feel like natural breasts rather than the hard, inflated balloons they felt like for so many years. They don't feel numb, and I can feel hugs! I am grateful for every moment I remain healthy and with my family. (And my little one who I was nursing back then is 18 and going off to college in the fall!) P.S. I haven't had to have a mammogram in 16 years. Bonus!

    I am back on bc.org today because my next door neighbor and friend, who was diagnosed with triple+ BC the same year as me, had a recurrence in her bones 5 years ago, has been receiving tx since, but three nights ago she had a seizure--a large malignant brain tumor was found, and she will have brain surgery on Tuesday. I am heartbroken for her and her family. It's a crap shoot. She had a unilateral MX. And though BC did not metastasize in her breast, I always wonder about it. I have another friend who had a recurrence this year--13 years after a lumpectomy, chemo, radiation. After surgery, she is going through chemo again.

    This is my very long way of saying my own motto is "longevity over breasts" though it's a very hard decision no matter what. Best wishes to all.

  • kaynotrealname
    kaynotrealname Member Posts: 346
    edited March 2023

    I will say, Carolina, that statistically speaking there is no higher recurrence rate whether you choose a lumpectomy, mastectomy, or double mastectomy. And in fact some studies show a better long term survival rate with just a lumpectomy and radiation although my oncologist doesn't think that's because it's a better treatment plan. She thinks it has more to do with surgery complications or other similar issues but that's neither here nor there. The point is that there is no better surgery than another as long as it's what your oncologist recommends. I am so sorry about your friends though. I hate reading about secondaries but it's especially heartbreaking when they occur so late because it's a reminder that this diagnosis is a forever thing. But it is what it and we can all only do our best with it. Much love sent your way and so happy to hear how healthy you have been though. That is comforting for the rest of us just starting out.

  • daenerys30
    daenerys30 Member Posts: 10
    edited March 2023

    I had breast cancer in 2020 on the right side only and had a unilateral mastectomy with reconstruction. In 2021 I had a recurrance of cancer on the same side! Had to get chemo, surgery and radiation with physical therapy for two months to prevent muscle atrophy. Bilateral may be good if you want total piece of mind but recovery can be difficult and you loose sensation due to nerve damage. It's up to you. You could get the unilateral and decide later to get the other breast removed.


  • deniseml
    deniseml Member Posts: 66
    edited March 2023

    Canceruan, take deep breaths and know you are not alone in your struggles. I also struggled with this decision until I realized that I could wait to decide. I had initial mastectomy 1/2021. I did proceed with prophylactic mastectomy 9/2022 . I knew that decision was right for me. That decision I would have questioned for many years had I allowed fear to drive me to make it initially.