Should I Get a Bilateral Mastectomy for DCIS?

I chose bilateral because I was tired of having to do repeat mammograms, ultrasounds, etc for many years. I had invasive in my right breast with a 5 cm tumor and some suspicious areas all in the right breast. My surgeon told me a mastectomy was what she recommended. I elected bilateral because I was worried I’d have something pop up in the left breast. Also I’m a very symmetrical thinking person and to be “ off balance “ would have bugged me. I’m very happy with my decision. Im 3 weeks post bilateral mastectomy and all is going well so far.

I chose bilateral because I had IDC in left breast all showing triple positive. Surgeon recommended mastectomy, they felt something “feeding” three small spots and possibly 4. I opted for both because, I am older and didn’t want to risk another surgery in the future for right side. Plus I wanted to look asymmetrical. One big surgery and done was my thought process. I also had an abdominal diep flap, reconstructive surgery, being my lymph nodes were clear. I am very happy with my decision. No matter what still have to be vigilant and monitored I am in the beginning stages of my recovery road, what I do know, is I have met so many wonderful beautiful compassionate people. Whatever you decide, it’s your journey! No wrong decisions. Just lean on your support group.

I will be undergoing bilateral mastectomy because I’m BRCA 2 positive and cancer can recur in non affected breast.

Pamela- did you have your diep flap surgery at a later time after mastectomy?

I choose bilateral because I also have the BRCA2 and a high chance of recurrence. I did the DIEP flap reconstruction— I’ve posted elsewhere about it in this topic if you can find it— bus basically saying it was super hard and painful at first but got better each week. I have no regrets. My boobs look the same and feel like normal boobs. However, I did nipple sparing surgery, but one of them didn’t survive so I have a tattoo of a nipple that was done at my doctors office.

I chose bilateral with DIEP after even though I was stage 1, grade 2, her2- & hormone+. Why, because I didn’t want to do this again & many woman I spoke to had a lumpectomy & then reoccurrence. Also, the DEIP is one & done. So i could have had a single mastectomy & single DIEP on just the right w/ a left reduction but God forbid, I got cancer in the left, I could not have done the DIEP again. ❤️‍🩹

I chose bilateral bc I had fibrous dense tissue and I didn't want to go through bc again. I have not decided on reconstruction bc I don't want surgery again either. I'm also fairly young so my chances of a reoccurance were higher than I wanted to deal with.

Jessica B. "One and done" as in only 1 surgery?

Laura M , yes I had my ab flap at the same time.of my double mastectomy. It was an 9 hour Surgery. With a 3 team at Northwestern Hospital in Chicago. One breast surgeon and 2 plastic teams. The only reason I was able to have it done at the same time was because my lymph nodes were clear and I did NOT have to have radiation. Otherwise they would have put in extenders to hold off until I was done with radiation or chemotherapy. As those treatments would ruin new tissue from the flap process. So it was the roll of the dice that cancer gives you. But I was mentally prepared for either. Keeping my expectations low. Dreading of course, but pushing forward with tons of prayer warriors. So it was all on the condition of “wait and see “ on the lymph nodes. We are all conditioned for this wait and see by now, but it doesn’t matter the anxiety of waiting creeps in for all. I tried to keep busy, praying all the time. And tried to keep this process as simple and clear in my head. Clear nodes it is a go, bad nodes is a delay for reconstruction and radiation and second surgery for that. I was surprised my nodes were clear and did a happy dance. It was done in May. It was rough. But cancer doesn’t make anything easy right? I was able to come home after 3 days but with six drains for the first 2 weeks. I had some healing complications and conditions, as by body started to reject the liquid stitches and I am allergic to adhesive tape. But I was up and walking and going to the bathroom within 24 hours of that 9 hour surgery. But my recovery was longer than planned due to rejection of stitches and a little infection. But my breast team was on top of every hurdle and made plans but it just took more time. Instead of an 8 week recovery I needed 12. They were awesome. I became an expert and bandage changing and showering. Only one unexpected issue happened, I woke up in recovery completely deaf in my right ear. I am one for the books they say. NW has been looking into it and trying to resolve. They have concluded it was sudden hearing loss. No explanation . So we are trying to plan a cochlear implant soon. And of course I have to have a 2nd surgery anyway as my abdomen wall collapsed. ( kinda like an hernia situation) but not. They say that is common with this type of surgery. But again mentally preparing yourself for all these complications and jumping hurdles is a challenge. Cancer never gives anyone the same choices or expectations or experience. I All always prepare for the worst scenario as possible so I wouldn’t be disappointed or surprised. Definitely request an ONCO type test on your tumors once removed it is a second type test they do separate from the regular path one, as this test can tell you the probability of recurrence , and how effective chemotherapy will be. This test completely changed my chemotherapy plan. As it showed that chemotherapy would be less than 1% effective. It also showed that no detection of HER2 positive was found. They couldn’t explain why the 3 previous biopsies showed that, and this one didn’t. I say I had a miracle. Anyway my journey is still long and always changing, twisting and turning. I am getting ready to plan for cochlear implant and my 2nd surgery in December for my ab wall repair. And thank you Jesus no chemotherapy at this time . So now I can have port removed. Your journey will be different and will have just as many twists and turns, but don’t get discouraged. Sending prayers to you.

The stats for a recurrence:After a lumpectomy, 50.9% of recurrences occur within three years, while 64.9% of recurrences occur within three years after a mastectomy. The recurrence pattern for lumpectomy is different from mastectomy, with the highest peak for lumpectomy around five years after surgery.

@Lissa P yes that is my understanding. The stomach can only be cut into once. There are other places that can support a flap procedure like the thighs or buttocks, I believe. In my opinion, get multiple opinions about reconstruction from different surgeons. And really look at & compare the surgeons previous patients before/afters. I looked at many photos of women and it’s my similar body type so u would get a sense of how things would look for me after.

I did bi-lateral so I didn’t have to worry about the other side having cancer. BUT I am actually sorry I did both. I didn’t realize how much not having feeling in a breast would impact my sex life.

My journey started in 1998 with a breast cancer diagnosis, I knew because of my family tree ,I would probably get it but not at 48, my Mother & her Sisters all got it (But one) her sisters got it in their late 60s early 90s there were 6 girls,like I said only one sister didn’t get it but her youngest daughter got it at 45,her oldest daughter 79 is going through treatment now… my other Aunt who had it at 80 her only daughter passed of breast cancer at 79, now they do genetic testing my Dr said no it would bar me from ever getting insurance again ?? Bull!! just a cost saving measure!! The next thing I asked for was a double mastectomy I was denied that also told I was too young?? Hmmmm So he decided to do a lumpectomy with chemotherapy and radiation . So did what he wanted, got all kinds of new tumors, back to surgery double mastectomy I wanted tram flap reconstruction he said no!! Implants is what I got I was just glad to be alive first day after surgery somehow? I got staff and lost my implant on my cancer side!! When they took it out they figured after so much trauma to the left side the implant couldn’t breath as the skin was so tight because of all the radiation !! So now I have a huge hole in my chest where the implant sat for less then 24 hours, I had to sue this insurance company to get out from under this dr , They ( insurance company)let me find my own plastic surgeon of which to this day is My Dr of choice I got my tram only on the cancer side but it would fool any one even me my right side is an implant I need a new one about every 5/7 yrs Next on the road to recovery and acceptance of my new body I donated my time and blood to research so every week I would go in and have blood drawn/if it could help someone I wanted to do it!! I finished the study now it’s a blind study nothing was supposed to come to us BUT for me they kind of broke the rules get to my Ob I needed an emergency Hysterectomy I have the BRC2 gene!! Off I went surgery within a few days! What Iam trying to to say is it’s your body , your choice things have come a long way explore your options get a 2nd opinion, study ladies I had a male dr who gave me no choices that I wanted I had triple negative breast cancer stage 3 with a BRC 2 Genetic Feeling Blessed to be alive🙏❤️🙏❤️

This happened to be. I had extensive DCIS on the right. After a lot of thinking I decided to have a double mastectomy. I chose this option because of anxiety. I knew I would worry. I’m happy I did. My surgery was in May of this year.

I had a partial mastectomy then had a plastics doctor use breast tissue from other breast to make them symmetric with a lift I have been in recovery for 2 weeks it's painful but rest is your friend I have dissolving stitches from underneath my armpit all the way to the others armpits but it's healing very well also have dissolvable stitches going up the center from the bottom and it's been pretty incredible what they did I went for my 38c to I think my goal after the swelling finally goes down will be a 34C and it is a lot more comfortable because I have damaged nerves and splinters in my back of my neck and it takes that weight off and water difference it's been so far so keep your head up and make sure you speak up but you want before they do it

I chose to do bilateral mastectomy I had ductal in the one breast 3 very small tumors that breast was the one that needed to be removed I had 1 spot of lobular in the other I chose to take that one as well .. I could have had a lumpectomy on that side but in my gut felt if I’m taking one I’m taking them both … good thing I did surgeon said after surgery that I had more cancer in that breast not yet detectable on imaging.. so I think you have to just go on instinct.. glad I did that surgery was done last February 4th I had tissue expanders for future reconstruction, fills , 5 weeks of radiology healed and just had my exchange to implant surgery on August 16th healing from that .. life is slowly getting back to normal.. ..

What is a bilateral mascetomy

Denise, a bilateral mastectomy is the removal of both breasts even if only 1 had cancer. Most women think if they have both removed the cancer won't come back. But, it could! The stats show that 64.9% of women will have a BC recurrence within 3 yrs. Only 50.9% of women with lumpectomy have a recurrence within 3 yrs. So I opted for a lumpectomy. My BC came back after 14 years in my bones MBC. If you have a bilateral mastectomy you won't get any more mammograms. So women will need to be aware of their bodies. Constant fatigue, joint aches, bone pain, jaundice, shortness of breath, headaches can be a sign the MBC has returned just not in the breasts. Most common is in your bones. Surgeons like to do surgery, they don't give you the stats. I feel lumpectomy was right for me. I know a woman who has had 9 breast surgeries, original, recurrence in tissue left by the surgeon and the rest for reconstruction.

This is such a significant decision, and it's completely understandable to be weighing all the options when facing a mastectomy recommendation. Many people in this community have faced similar choices about bilateral surgery and can share their thought processes and experiences to help inform your decision-making with your medical team.