Have the right breast removed, or do not have it removed, that is the question...

[Cheryl44]

Hi everyone:

As you can see by my signature, I had my left breast removed 2/12. What I didn 't put in it was the size of the tumors. I had two primarytumors that were connected by a long strand of DCIS that when stretched out measured 11 cm. I had genetic testing done and I do not have the mutated genes for BC.

I plan to have Breast reconstruction next summer, but my question is, should I have the right breast removed as well? Do alot of women out there with Her-2 go ahead and have the other breast removed. I am really trying to figure this one out.

Any information would be appreciated.

Thank-you,
Cheryl

[Linda]

Hi Cheryl:
I hope you get some other replies, to help you make this decision. And you have some time to research.
From every doc I talked to, I was told that her2 bc is NOT high risk for showing up in the other breast (I had IDC -- lobular is different, I think.) The only person who urged me to consider a bilat was one plastic surgeon -- for two reasons: you may have a more symmetrical cosmetic result by doing both. And: If you do a flap that harvests tummy fat, you can only take that tissue once, so if you did decide later to remove the other breast, you could not do another flap from that same area. On the other hand, 2 other plastic surgs did not urge a bilat.
I suggest you interview several plastic surgeons and get their input.
Good luck
L

[cafe1084]

Hi Cheryl,

I also had both breasts removed because when they did my lumpectomy, alsong with her2+ er/pr- IDC and dcis, they found LCIS (lobular carcinoma in situ) and my surgeon and onc told me it likes to travel and is more likely to show up at a later time in the unaffected breast than the others. Also, I was 36 last year when diagnosed and my reasoning was that I would have a better long term outcome with both breasts removed. I also felt like, at the time, I couldn't have dealt with another surgery a year or 2 down the road. I always keep in the back of my mind that even though they are both gone, every single cell is not removed and cancer can still crop up in the few remaining cells. It is a tough decision, one you have to really base on what you think is best for you. I don't think having both removed presents you with any greater risk during surgery, but it can really be very scarring to your ego and self-esteem. Don't let fear drive your decision. Medical opinions is what I would look to when making an informed decision.

Big hugs and lots of luck to you,
Steph C.

[Lauriesh]

I did not have the other one removed. I was 37 when I was diagnosed. I also had a somewhat large tumor and also tested neg for genetic testing. I spoke to the radiologist and asked him if my remaining breast had dense tissue(which would make finding a tumor harder to do). He told me it did not and that my bc tumor was clearly visible from the mammogram.
I now go for mammograms every 6 months on the remaining breast and so far so good.
I had diep flap recon done and it looks great. I did have a lift and reduction done on the good breast to match the new breast. If I ever have to have the other breast done, there are other flaps that can be done, such as from the back or the butt.

Good luck with your decision

Laurie

[StillHere]

Cheryl, I had both removed with the blessing of both my surgeon and my oncol. I was diligent in getting yearly mamo's w/ US, but since my breasts were large and very dense, the bc did not show up on either. It was directly in the center of my breast heading backwards toward my chest wall. My breasts were always full of cysts and calcifications. My surgeon once told me if I biopsed all your calcifications you would look like a pin cushion. I did not want to go through another fifteen years of suspicious mamo's and biopsies. I did have bilateral free flaps 1 yrs out and am very pleased with the results.

[jones7676]

I did not have both breasts removed, I wish I had......I feel lopsided. Also, when it is real hot and I'm having trouble with lymphadema (sp?) I would like to just run without a bra because it aggravates it, and I can't. However, if you are planning to have reconstruction, my comment about being lopsided would not come into play.

[Lolly]

I had my other breast removed in 2002, after treatment for primary disease in the left breast and later recurrence to the left side in 2001. Mammograms of the remaining breast in 2000 and 2001 showed suspicious calcifications and I wanted to cut down the risk of recurrence or new primary to that side, plus wanted to be "even" as I had decided not to have reconstruction. I had a simple mastectomy with one node removed, which was negative, but later recurred to the remaining nodes. Same type of bc; er/pr-, her2+. However, since I was already dealing with recurrent systemic disease when I chose the second mastectomy, I wasn't surprised when those nodes became active; disappointed yes!

I've been told my case is unique and it's very rare for the same type of cancer to recur in the opposite breast so you just need to weigh your options and decide what will make you feel best.

Take your time making your decision, and ask plenty of questions!

<3 Lolly

[Andrea Barnett Budin]

You can read my *story* in my signature. I did not have both breasts removed. 3 yrs after initial dx, asking my onc about a right breast mastec, he said for you, no. Why? Look where it is -- he pointed to my liver. True. Good point. And I have been NED since '99, thank God. Just something more to think about. Not to confuse you. Hopefully, to be of help. I wish you NED for many decades. Gather all the information you can (from docs and other Sisters, and then listen to what your heart -- or Inner Voice -- tells you to do, honey)! With love and prayers for you... ANDI

[Audrey]

I had a mastectomy in 2001 on my right side, followed by reconstruction. Since my large tumor was not found on mammogram (due to large, dense, lumpy breasts), I never really trusted subsequent mammograms on my left side. Several years later, I finally decided to have the left breast removed, too, following a diagnosis of lobular carcinoma in situ. Now I'm happy to be breast-free, since the remaining one had turned into just a constant source of worry for me. It was worth it for my peace of mind, even though I'm still young (42) and don't really feel "sexy" anymore...I'm married, nursed both my kids, I guess I didn't really "need" my breasts anymore, but there are days when I feel a bit blue about it. I did read this funny book, written by a young woman who had a mastectomy, called "The Victoria's Secret Catalog Never Stops Coming"-about how she coped with her change in body image in this breast-conscious society. I think the author's name is Jenny Nash. Anyway, best of luck to you with your decision.

[Belinda]

Hi Cheryl

You can prob see from my sig - I had left breast off due to cancer on 10 Jan this yr, then made a decision to have the right off very quickly. My surgeon was a bit hesitant at first - worried I was being over-reactive. But, like others here, my cancer had not shown up on US or mammogram, and when they did find it thought it was a couple of nodes (one finally showed up on mammogram - that's how we knew it was there at all) and a smallish lump - NOT - 4x3.5x3cm, plus a couple of others in another quadrant and 6 nodes. I had been having mammos regularly, so my trust in screening methods availble here was - well - nil. Also, after the axillary dissection - which I found the worst part of the surgery - I was quite clear I didn't want a second LE arm and another dissection.

My surgeon put me through more rigourous screening on the right breast, then agreed that my decision was a sound one, and I had the right off on 1 Feb.

He did say that it is quite common for women, after chemo, to come back and want the other breast off, for all the reasons I had given, PLUS the added desire not to have to do chemo ever again. He was just surprised that I had come to the decision so quickly after my first surgery, before chemo.

I have no regrets at all Cheryl, I am glad not to have the worry of the other breast, and am glad I am not lopsided (my breasts were quite large so it was a pretty marked difference).

My family were all really supportive too, I think it was a relief for them to have one less thing to worry about.

So all round - chances of it coming back in my other breast were prob very low, but for peace of mind it was the right decision for me.

Also - the surgery for my second mastectomy, without the need for axillary dissection, was very very much easier - far less discomfort and by comparison was prett much a breeze.

Good luck in making your decision!

Belindaxx

[dhealey]

Cheryl
I had my left breast remove in Oct. due to BC. After chemo my oncologist had me see a genetic counselor. Even though the genetic test came back negative they advised me to have the other breast removed because of my family history (mother, grandmother and aunt) all diagnosed with BC around the age of 55, except my grandmother who was 80 when she was diagnosed. In June I had my other breast removed. The pathologist said it had alot of precancerous tissue. I am glad I went a head with the second mastectomy. I have elected not to have reconstruction and I am happy with my decision.
Debbie in North Carolina

[Cheryl44]

Thank you all so much for your responses. I will continue to weigh all the information...
I do go in for a right breast MRI next week. We'll see what happens.

Cheryl