Prophylactic Mastectomy

[Maree]

Hi everyone
I had a right mastectomy in 2003 followed by chemo, NED now. I have recently had nipple pain and a feeling of aching in my left breast. Mammogram and ultrasound were clear. I was wondering about ladies who have had prophylactic mastectomy on the unaffected side, in what circumstances was it done and how much resistance was met from the doctors. I would appreciate your responses. Maree

[mekasan]

Dear Maree,

At a follow-up with my plastic surgeon, he noticed that I was uneven and gave three suggestions (stay uneven, reduce the implant on the operated side exposing breast bone, or put a small implant under the unaffected breast). I suggested the fourth option of a preventive mast. He was immediately supportive and offered to follow up with my breast surgeon for me. Two days later, I saw my breast surgeon, who greeted me with a statement that she had already spoke to my plastic surgeon and she was "very pleased to hear" that I wanted to have the other breast done. She stated that she likes to see women make the decision to remove both breasts, but it is not her job to suggest that women remove healthy body parts. It is a personal choice. My onc indicated that he was all for it as long as the other doctors found no reason for me not to and as long as I waited 6 weeks after beginning herceptin.

Some background info:
I had my first side done after a diagnosis of only DCIS. However, after the mastectomy the patholgy report of the tissue found two tumors of IDC which were not found on any MRI, mammo, or ultrasound done pre-op. As a result, I went from stage 0 pre-op to stage 1 post-op. I then went through chemo and began herceptin. Because two IDC tumors could sneak by all other types of test, I decided I wanted the other breast removed. I hated the idea of worrying daily about what was growing that no one could see. Also, I found my first cancer by comparing my breasts. Removing one meant that I lost my measuring stick - I no longer had another breast to compare the remaining brest to. In addition, being ER-/PR- and Her2 positive (all factors suggesting aggressive characteristics), I wanted to remove the breast. I also just turned 30. Cancers in younger women tend to be aggressive, becasue they are more likely to be hormone neg. Considering I plan to live for awhile, all of us (me and my dr's) feel that removing the tissue is a good idea. My breast surgeon explain that although we have two breasts, they are one organ and therefore recurrence to the other breast is not uncommon. I had a pre-op MRI for the second mast and a new tumor had formed, this time it was benign, but I still had to go through a biopsy to find this out. That was the clincher. I knew I was making the right choice for me.

I have no children yet and breast feeding breifly crossed my mind as a reason to keep one. There are many benefits to breast feeding a baby. However, I could only drink soy milk as an infant and was not breast feed. My brothers were the same way. I imagine if I had a child, it may also end up on soy. So this factor carried little weight with me.

Now I have two perky and evenly matched breasts. I am very happy with my choice.

PS: My brother (of all people) asked what would happen if i only had one .. would one stay perky and the other droop over time? Now, I will never know.

I hope this helps. Please feel free to email if you need more info.

Sincerely,
Shannon

[madubois63]

PS: My brother (of all people) asked what would happen if i only had one .. would one stay perky and the other droop over time? Now, I will never know.

The answer is YES.

[tousled1]

I was diagnosed Stage III, ER/PR-, HER2+++, grade 3 tumor, axillary node involvement. I went through neoadjunct chemo and am now scheduled for surgery next Thursday (June 8). After considering my strong family history of breast cancer, the fact that I have fibrocystic disease, and very dense breasts, I have opted to have a bilateral mastectomy even though all tests show no tumor in the left breast. It was a very difficult decision to make and I do not regret it. Since I have to have radiation after surgery I will have to wait for reconstruction. I am crossing each bridge as I come to it. If you are comfortable with your decision then you know it's right for you. Good luck to you.

[R.B.]

There are quite a number of threads with in depth discussion links etc on this topic.

If you have not found it you may want to check out the search facility above - click on search above right purple bar and enter the term you are looking for.

RB

[jener8er]

Hi Maree, I am scheduled for a proph mast and immediate reconstruction of BOTH breasts on June 21st - just 3 weeks away (yikes!). Like everyone else who posted, I don't want the worry of it returning in my "good" breast, and I also want the symmetry. I'm having the DIEP flap recon at UCLA. It's a one shot deal so for me the decision was pretty easy. My husband, on the other hand.... but that's a whole other post LOL!
Good luck with your decision.
Jen

[Val Pfeiffer]

My Dx info is about the same as tousled1. I had only the affected breast removed and I haven’t yet had reconstruction. Mekasan—did you have radiation? I am still debating whether or not to take off the other breast, but since one side was radiated and the other side wasn’t, I think I will still have an “uneven” look if I have reconstruction on both sides.

Have any of you had reconstruction on both sides after one side was radiated? Have any of you had both breasts removed and had no reconstruction? I’d love to hear your thoughts on this, everyone. I;'m thinkin' that maybe I don’t really need breasts…they have caused me too much trouble already (well at least one of them has; the other one is on a sort of permanent probation…)

[jener8er]

Hi Val, I'll be happy to share what my recon comes out like - I had radiation on one side and I'm reconstructing both. I'm hoping for a more symmetrical look by doing both at the same time. I'm also done with my good side - once one has tried to kill you, I have a whole different relationship with the other one! I feel like I have a time bomb strapped to my chest. My surgery is June 21st and I'll keep you all posted with how it comes out - can't be any worse, right? :)

[Annemarie]

I had first a single mastectomy because my doctor felt I should do what is necessary for the diagnosis and be treated. He felt we could always re-visit treated the other breast. I was 31 and very overwhelmed and I think the Drs. concern for me was that is ws too many decisions to make all at once.

I did get the other breast removed partly to avoid bc in the other breast but also so they match. The could have inserted an implant in healthy breast to give it a lift. For me it was the right decision but my breast surgeon asked me why I would amputate an healthy breast? With proper screening he felt I would be fine.
Annemarie

[JackieC]

I was diagnosed in 2/2005, Stage 1, one side only. I didn't hesitate a second to decide to remove both with immediate reconstruction (expanders, later replaced by silcone implants). My sister passed at 41 from BC, so that played into my decision. I was so glad I had both removed, like you, the mammo showed only one area (biopsy said Invasive, the lab examining tissue said DCIS only) but there was a second area on the same side that was invasive that the mammo, MRI and ultrasound did not pick up. It was 2mm. The other side was free of any issues, but I'm so glad it is gone! I love the reconstruction! I can lift weights, box, run, etc. with no issues. My final implants replaced the expanders a few months after I began Herceptin. The Dr. said Herceptin didn't matter when doing surgery, I delayed it a bit because of moving and a vacation. It is a personal choice, but I have yet to hear from anyone who has regretted it! Good luck!

[Lolly]

I had a left modified radical mast. in '99, and after a local/regional recurrence in 2001, a right simple mast. for peace of mind. My pcp, onc and breast specialist/surgeon were all very supportive of my decision, and although I later recurred again to the right axilla, I feel the preemptive mastectomy saved me additional trauma/surgery. I've had no reconstruction, just a personal choice.

<3 Lolly