Mastectomy--single or double??

[vpfeiffer]

hi everyone--
A couple weeks ago I asked you guys about lumpectoy vs. mastectomy. After looking at my situation, I have decided that a mastectomy will be best for me. My doc team agrees. So I will be having a mastecomy on one breast and I am trying to decide whether or not to have mastectomy on the healthy breast. Here's a review my details:

* Age 41
* Physically fit
* No family history of BC
* No evidence of cancer elsewhere (PET scan and MRI)
* Her2-Neu 3+
* er/pr negative
* stage III (8cm tumor)
* estimated 1 to 3 nodes involved

I am going through weekly chemo right now -- Herceptin, Carboplatin and Taxol. I will have surgery in about one month, to be followed by three more months of the same chemo and then radiation of the armpit area and the mastectomy scar. After two months on chemo, my tumor is only about 10% of it's original size. I have small breasts, so because of the size and shape of my tumor, and the fact that it took up so much space in my breast at diagnosis, a lumpectomy isn't a viable option.

Have any of you chosen to remove your healthy breast when there was no family history? Her2 cancers tend to reoccur, and since there is a risk that my cancer could be lurking elsewhere, I am considering taking the healthy breast too. It would take away the worry about recurrance, I would have symmetrical breasts (instead being 50 someday and having one perky teenage breast and one drooping 50-year-old breast :-), and no more mammograms!

If you have done this, can you tell me how you felt about it? Did you get reconstruction right away or did you wait? How great an impact was losing your nipple sensation (that's really the ONLY thing holding me back from a double). If you got reconstruction right away, did you have the expanders put in at the time of mastectomy and then have radiation after your permanent implants were in place?

I have a slight build and cannot afford to take tissue from other parts of my body, so implants are my chosen option for reconstruction.

I am fortunate to be friends with the best surgeon in the area, who has hooked me up with a great oncologist. I am seeing my plastic surgeon tomorrow for the first time. But I need to hear from women who have faced this choice and I need to hear what y'all did.

thanks!
Val

[*_Annemarie_*]

I had a similar diagnosis as yourself (a bit different). I started out with a single mastectomy. My breast surgeon (from Sloan) felt that I should not amputate a healthy breast. After the single mastectomy my ps told me she would have to give my other breast a lift with a small implant. I am average size and had silicone implants. I decided that they would never really match and there would always be a threat. I am pleased with my decision! I am going to get my nipple reconstruction in a few months! Good luck in whatever you decide.

[Kristen]

VP,
It is a very perosnal decision and from what my rad onc told me there is only a slight chance of it reocurring in the other breast. I too was small breasted and had to have 7cm taken out to I didn't have much of a choice either.

She also told me, if it recurs it is usually in the first 2 years. I decided not to have the other one removed. I had 3/12 nodes + and had microcalcifications over a 5cm area. I was on the same chemo tx. you are on but post surgery. Do you have any info on the statistics of this combo and recurrance rates?

I am 5'9" tall and weigh 140#, I looked into having implants and with radiation didn't feel comfortable with it. since I am slim, the other PS wanted me to do a latisamal dorsi tram, which I didn't feel comfortable with becase I didn't want the scar or the muscle gone. I opted for a DIEP, S-Gap. where they take fat from your rear and do microsurgery to join the blood supply to the new breast. I love it. I did wait 6 months post radiation to have it done, that was my PS advice. When I was having my masectomy, I was going to have implants in and it couldn't be arranged to have both doctors there. It was a blessin in disguise. With an S-Gap, it is your own tissue and won't or shouldn' t reject the procedure. The second operations will be to lift the other side to match, so that they are perky now and gravity will do the same to them as it has in the past 43 years. look up DIEP Sisters and they give a list of drs. who perform them and can give you history on them. Not a lot of people know about it. Carlye and i both had ours done in Baltimore from DR. Bernard Chang, he is head of plastic and recon surgery for Mercy Hosp. He was previously at John Hopkins and had done over 500 of these surgeries. if you don't live close, like me, they are very freindly with working with you long distance. Alot of these places want you to stay 2 weeks and that gets expensive. If you have any questions or are interested let me know and or ask Carlye, we both are very happy with our decision. Hope this helps at least as another option. Take Care K

[Linda in Calif.]

I had always had difficulty with cysts in both of my breasts since my late teens. One more so than the other... which is the one that eventually developed cancer at age 49. I chose to have both breasts removed because I didn't want to have to worry about developing cancer on the other side and I also wanted to look "balanced". I also have never been very sensitive to sensation in my breasts so it wasn't much of a loss in that department. I had expanders placed at the same time I had my mastectomy/breast removal. I found the expanders very uncomfortable. I developed mild lymphodema which, I feel was in part caused by pressure from the expanders on my lymph system. (That is just MY opinion.) After I had the expanders removed and the implants placed the lymphadema improved. I had radiation AFTER complete expansion and before implants because my plastic surg. said the skin after radiation is too damaged to stretch well and the radiation damages the implants. I felt the result from the reconstruction was just OK. I look fine in clothes but without clothes I don't match. I guess that is understandable because one side had extensive surgery (3 primary tumors/ 10 of 20 lymph nodes positive) while the other side was minimal (simple breast removal /6 lymph nodes tested...all negative). Because I had such a bad time with radiation burn destroying my skin instead of being a size C, like I was naturally, there was only enough skin to have size B. That was OK with me but you have given me the impression you are very petite so, depending on how you do with radiation, it may affect your outcome. I think if I had it to do all over again I would pass on the reconstruction but still have both breasts removed. I hope this helps. Feel free to ask me any questions I haven't answered for you. Take Care, Linda in Calif.

[*_guest_*]

My mom had a mastectomy 20 years ago. Back then I don't know if she had the option (Or if they even mentioned it) to remove the healthy breast. She did not have the reconstruction done and she always regretted that. As far as recurrance goes, she always thought if it did come back it would come back in the other breast. It didn't. It came back in the lungs, liver and bone. The other breast still has no sign of cancer!

[Patty H]

After I had finished what I thought was my last chemo, I felt so awful mentally I thought i can't do this again and I ask my breast surgen to do a double and she says Ok. When I got home and thought about it, I called her back and said can we talk. I didn't have the double and now I am glad I didn't. No my breast don't match, except when I lay down or stand really straight because the fake one doesn't sag. They did offer to lift the natural one a little but I just wanted my one real one, with no surgery to it. I have read lately that if you have them both removed it won't be the same because they do the surgery different on the cancer one. Also I think I read that breast cancer, when it does start moving doesn't move to the other breast, that if you get cancer in the other breast it is usually a new cancer. I am not sure where I read that and you can't believe every thing you read but it does make me more comfortable with not having the other removed. I had reconstruction at the time of the mastectomy and I would do it all over again in the same situation. I had an expander put in until after the radiation then when it was time to put the nipple on, I had it removed and a silicon implant put in. The expander was not comfortable and it was saline. So that is why I went with silicone. I don't know if that was the reason but the silicone is natural feeling and more comfortable. Patty H

[Audrey]

I had a mastectomy in July 2001 after my initial diagnosis of BC (Stage III, large tumor) and had a saline implant put it at the same time of the surgery. I was petite but large-breasted, so I had a smaller implant put in and a breast reduction on the healthy breast. I was very happy with the results, but did lose nipple sensation. After my treatment was over, I was afraid of the cancer spreading to my other breast and was plagued with cysts and endless worries and mammograms. When it was time to exchange my expander for a permanent saline implant, I decided to have the healthy breast removed as well. This turned out to be the right decision since the "healthy" breast had lots of cysts and the pathology report diagnosed '"lobular carcinoma in situ". Which probably would have turned in to another primary cancer in my case. So now I have a double mastectomy, well-matched , small saline implants and have not yet had nipple reconstruction. Am not in a hurry right now, as it is so easy and comfortable to go braless now, something I never thought I would be able to do back when I was "full-figured"--By the way, have any of you regretted getting the nipple reconstruction?

[Linda in Calif.]

Audry: I originally was going to have nipples tatooed on but thought about it and figured I had spent my whole life trying to cover my nipples up and here I'm voluntarily getting them back?! It didn't make much sense to me so I elected to not get the tatooing....It's GREAT going braless and I can wear very shear white shirts and not worry. Hope everything works out for you. Take Care, Linda in Calif.

[vpfeiffer]

Thank you for all your stories!!

I met with the plastic surgeon today. I feel so much better after hearing from you all and now getting his advice. We discussed many things, including the timing for my reconstruction. I am almost certain that I am going to do a single mastectomy. After hearing his opinion regarding placing the expanders immediately, I think I will be waiting to do reconstruction until 6 months after radiation is completed. I just don't want to take the chance of getting an infection after surgery. I will still be getting chemo, and my white counts get too low. He doesn' think I have enough tissue in my back or my abdomen so I will get an implant.

I agree about the nipple reconstruction -- I don't see the point. I just read "Why I Wore Lipstick to my Mastectomy" and she got a heart tatooed on her reconstructed breast. I sort of like that idea :-) I might do that too!

thanks--
Val

[*_Vicki_*]

I've had a double mastectomy and have never regretted it. I prefer the symmetry and find fitting a bra is much easier with no breasts than one. I have three different pairs of prostheses to suit varying purposes and climates and find it reasonably easy. Sometimes I wonder whether I might eventually get a recontruction done, but I've plenty of time to think and plan for that. I've always been very full breasted so it's rather nice to be flat chested and able to sleep on my stomach for a change!

I had the same cancer type as you, but had 20/30 positive nodes and a hot spot in the other breast on PET scan. Turned out to be a false positive, but I couldn't wait to be rid of it.

Each for their own

Happy decision making.