One in Six Women Choose Double Mastectomy

thank you wildplaces for your reply and the link.

I have a somewhat dumb question ( and i will ask my surgeon too ) --do they remove all the breast skin with mastectomy ? Thank you

Not a dumb question at all. I think it depends on your surgeon and certain other things. Sometimes they can so a skin sparing MX, sometimes a skin & nipple sparing MX, but then sometimes i think they have to remove skin/nipple due to location of cancer.

Thanks to those of you who continue to respond to this topic and to those who have specifically tried to help me with your intelligent and kind responses.

I still feel undecided even though my scheduled surgery is 5/16 for lumpectomy with SNB and removal of previously biopsied lymph nodes. They will use wire localization for both biopsy sites. I can't believe that I still don't have peace about it.

Probably the best thing I've heard was from the second BS - if I do the lumpectomy and nodes are negative then I could still choose to do the BMX if I wanted to avoid radiation. Yes - it would mean another surgery and more scars, but it also means that the door isn't closed and that's something.

I'm meeting with a PS tomorrow to discuss options. I have questions for him about immediate reconstruction and also about reconstruction options after lumpectomy or with radiated tissue/skin.

I realize that we all (myself included) just need to make the best choice we can with the information we have at the time. And try to not regret it later

lisa,

Yes, those with lumpectomies are more likely to have local recurrences than those who choose mastectomies. But, local recurrences aren't what lead to death; it is when the cancer finds a new home in the major organs (e.g. lung or liver) or in the brain.

Tara, you're right -- it's not just mastectomy or lumpectomy in many cases, but it's mastectomy or lumpectomy + radiation. But, what some miss, is that some of us would have gotten radiation even if we'd picked mastectomy. I was diagnosed at Stage IIIA with a very aggressive cancer (Grade 3, triple positive). I was getting "the works" regardless of my surgical choice.

I tended to think about my choices in this way:

mastectomy + radiation + reconstruction (which can involve multiple surgeries) or lumpectomy + radiation. I achieved a pathological complete response with neoadjuvant chemo -- why take off a breast if there's no detectable cancer left? My surgeon removed a golf-ball sized amount of tissue that surrounded my surgical clip. I was a C-cup, and surgery really didn't alter the size of my breast.

Best of luck to all you, making these decisions! I certainly would have done a BMX if I tested positive for BRCA.

I am new here and had BMX a week ago. I read the article and the comments here. For me, I had made up my mind before I even was diagnosed. I had thought about this for years, since I had a excisional biopsy on my healthy breast 11 years ago (turned out benign.) I researched, read everything I could, talked to quite a few BC survivors about their experiences with different surgeries and considered how the different options would affect my life overall, not just survivability rate. I also thought about what I would want as far as reconstruction. I think I always had a gut instinct that I would get breast cancer, though I have no family history.

So, I was grateful that I had made that decision already and didn't have to make it in a hurry during a highly emotional time. I imagine there are quite a few of us who already had thought about the what ifs long before their diagnosis. Although you can never know exactly how you will react until you are in the driver's seat yourself, breast cancer is so prevalent that I'd be more surprised if no one else had already considered their options before diagnosis.

clarasphonia --am so sorry that you are having symptoms with numbness and pain and shoulder issues. I have had some issues with my arm three months out with cording, and also have a h/o left frozen shoulder. There's really not anything the surgeons can do --they have done their cutting . I am seeing an excellent physical therapist who has experience with cancer patents ---may I suggest seeing a physical therapist if you havent already done so ? Neurontin can also be excellent for nerve symptoms and its very well tolerated except for some sleepiness ---it wont hurt to ask your doctors about trying neurontin. I hope this helps you .i hop eyu feel better soon. Also if you dont like your residual tissue --can you get a nice second opinion from a plastic surgeon about this

I've finally made part of my decision. I am going t forego radiation. This means I either go back for mastectomy, or I go against standard of care and go straight to tamoxifen. This will be hard decision, but I'm so relieved to have finally just made a decision re radiation.

My lumpectomy was successful: wide 3mm+ margins on all sides, no signs of lymph or vascular invasion. The tumor is er+ and not aggressive. Only reason I don't qualify for the IDEA trial is that i am 49 and perimenopause rather than 50+ post menopause. I guess I will be putting a lot of eggs in the tamoxifen basket if I don't do mastectomy.. will need that 50% relative risk lowered that tamoxifen promises. If I don't tolerate it well or something.. I can always get mastectomy later, yes?

I agree. I did have reconstruction, but I know my PS worked just as hard on women who are staying flat. And yes - it should be covered by your insurance.

I am one of those women. I have been diagnosed with DCIS & I have chosen to have a double Nipple saving mastectomy. To be clear I also carry the BRCA2 Gene & lost my mother to Breast Cancer in 2005 (and many more women in my family have been diagnosed). For me it is a no brainer ... If I have a lumpectomy I still have a 80% chance of getting cancer in the rest of my breast tissue; if I only have the effected breast removed the other breast still runs the great risk , one I am not willing to take.

I have to say being able to keep my nipples & wake up with breast (I will do the nipple sparing DIEP reconstruction) is a huge relief & to be honest I would have done it before being faced with DCIS if I'd have known that these options where now available... Its HUGE for me.

Over all it is a very personal choice, I still am very sad & scared even though I have been faced with this since I was 25 (now 38) when I first had my genetic testing done. It is a loss, it is scary... I am scared

Apparently, my ILC went undetected for (maybe) years as it is generally slow growing and I had it all the way up to my collar bone.

The big shocker is that even after path reports from biopsies ( first one on tumor found beneath my collar bone) and second one on right breast, that showed ILC; subsequent mammograms and ultra sound did not show any BC. Needless to say my radiologist was stunned and said he had never experinced this in 50 years. Left breast biopsied clear.

Helpfully, none of my doctors disagreed with me when i opted for BMX. Why would I keep a breast when I might yet again get cancer in it with no way to detect it until it did more damage?

BTW -- my BC was found because 'fingers' of the ILC travelled all the way up my breast to the brachial artery/vein/nerve root that led to my right arm. The cancer wrapped around this bundle to cause the blood to collect in my arm. When my arm was swollen and red I went to the ER where a CT scan found the 'tumor' and was biopsied to report ILC.

I had bmx on 05 July and am experiencing a lot of pain still 3.5 weeks later. I am assuming this is normal as my BS spent 3.5 hours removing tissue from beneath my collar bone, accessed through my armpit. While I don't expect anyone to have my exact experi nice I was wondering if any of you have also experienced this much pain almost 4 weeks post-op

Another ILC-er here. By my calculations, the little-to-no-statistical-difference-in-outcomes so often used to argue against our mastectomy and CPM choices is roughly 93% weighted by IDC and DCIS cases. Somebody tell me if I am wrong about that, huh?

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"Bilateral involvement is reported to be 20–29% in lobular carcinoma [10, 12, 16, 41, 42]. In our dataset the incidence of contralateral breast cancer in women with ILC was nearly double that in women with IDC." Source: https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr767

@kayarose -- thanks for your words.

Between traveling to tampa for treatments and hurricane Irma I'm a little behind on reading these forums.

To the MODS-- you need a way to notify members when someone responds to them. It is done on other forum sites-- why not this one?

Thanks for your words and information. Yes, 2-1/2 months post surgery, I am still in what I consider quite a lot of pain. Some of it caused by the radiation. Now I am having to get PT to control the lymphedema in my right arm. My right 'breast' area keeps filling with fluid also. My surgeon emptied it several times via aspiration, but changes in tissue from the radiation and fear of infection has essentially put a halt to that. I may need a small procedure soon to close the pockets to keep the fluid from collecting there. not what I want at this point obviously unless it is necessary.

Yes myPT is wonderful and a great help to me. I need to find a good one in Naples for when I return there next week. Right now, most businesses in Naples are still closed due to no power. Need someone to recommend a good one.

Good news is that I will soon (25 Sep) complete my treatments and will be able to start my recovery. I am hopeful that I will eventually be strong and healthy again.

Maureen I completely agree with your post. I have just been diagnosed with multifocal IDC stage 1, a mastectomy was recommended yesterday by my surgeon. When I mentioned the option of a bilateral mastectomy he was very hesitant saying that the left breast was perfectly fine. My concern that I stated to him is that I am a very large breasted gal, EE on a very petite body. I don't believe that they will ever be able to get them to match even with a reduction. His comments have frustrated me enough to seek a second opinion so that I can have a doctor that will be at least if nothing else a little more understanding of my thoughts and feelings. I have enough to worry about to not have the full support of my surgeon.

Jada

Jada:

I think you should definitely get the 2nd opinion. YOU have to live with this decision -- and some of our decision-making is cosmetic in nature. Mine was, in part. I was very small and every PS (but not BS) I talked to told me not to do a lumpectomy because they would never get an even match. That isn't the main reason I chose BMX but it factored in. I was 49, family history though BRCA-, and just did what I felt was the best thing for me. With full support of my surgeon.

P.S. My mom is larger, and went with lumpectomy, and she has issues with symmetry. However, they didn't do a lift. She wishes she had gone with BMX.

GOOD luck and peace with your decision.