Thinking about choosing mastectomy

[Caroline UK]

My question is about whether it's a good idea to have my left (so far, healthy) breast removed as a precaution. I'd rather keep it, but if it increases risk of recurrence I'd have another mastectomy. Last March I had multiple tumours in my right breast, Grade 3, and the cancer had spread to 6 out of 20 nodes, so to me it seems like it was quite a nasty aggressive one. I wondered what other people's experiences have been like, what you were advised etc. I'm lucky to have an excellent consultant, and I'll be discussing it with her next visit, but I'd love to hear from anyone with their thoughts on this.

[momdeeco]

I am thinking about the same thing, only a little different situation. I had genetic testing that came back inconclusive. (Not + or -) One oncologist said, Bilateral Masectomy, BSO, 2nd opinion doc from large Chicago hopital that is into genetics, said only would need BSO. Have you ever gotten to the point where you don't want to make any more decisions! Will be interesting to see what others have done. You may want to check out the site FORCE. Alot of those ladies have had PBM. God Bless

[kim]

I was diag with multifocal, stage 2, er/pr +, her2 +, 1 node at 37. I tested neg for BRCA 1 & 2.

One year after my first mastectomy I went back for a prof on my right side. I have absolutely no regrets, it was the absolute right decision for me. I have 2 small children and I had a really hard time with chemo, I wanted to do everything I could to decrease my risk of going through it all again. I also did it to decrease my stress, I did not want the worry.

A couple of things to consider. You are not decreasing your risk of recurrence you are decreasing your risk of a new breast cancer. Now I was told once you had one bc you were at increased risk for another(over the general population) so to me it made sense to do it. Also, most drs I talked to were not very encouraging about doing it since it is not "medically necessary". I had to gather info from them but really make the decision myself.

I hop this heps.
Kim

[Caroline UK]

Karla, thanks for your speedy reply. What does BSO stand for? And I'll look up that site you mentioned. I'll Google it, but could you give me the website address if possible in case I can't find it?

[Caroline UK]

Hi Kim, good to have your thoughts on this. I also would rather not go through chemo again, and would like to do something to help make it less likely I'd have to. My girls are 14 and 16, and I don't want to put them or my husband through it again either.
I sort of know what you mean by it not reducing the risk of recurrence, and sort of don't! If you have little or no breast tissue left, doesn't that mean that it can't, or has less places to develop again in the first place?

Caroline,

Hi. The term recurrence means that the same breast cancer has come back in a different place, whether locally (in the same breast, skin, etc.), or regionally (axilla). It's very unusual to have a primary breast cancer recur in the other breast. On the other hand, you can always get a primary cancer in that other breast and I assume that having your breast removed would reduce that likelihood by a great deal. You might want to review what your chances were of getting breast cancer in the first place (family history, age, genetic profile, etc.) and then add some negative points for having already had a cancer. Your doctor can help you do this. But you should be safe from a recurrence of the first cancer in the other breast. I don't know what the statistics are, but I believe they are very very low. If this is not accurate, and someone out there knows the correct story, please let us know.

[Melissai]

Hi I too was diagnosed with IDC of my right breast with multiple tumors the largest being 3 cm. My MRI only showed one area of the left breast but after having an extensive family history of cancer I made the decision to do bilateral mastectomy. When my biopsy report came back we were all surprised that there were 3 additional tumors in my left breast all approximately 1cm but in my "healthy" right breast that I fought doctors to remove they found a 6mm DCIS. So my decision to remove both breast was definatley the right decision for me. Had I listened to some of the doctors who knows how large the cancer would have been by the time it showed up on a scan. I had expanders put in at time of surgery and had my permanent implants put in in November. And I go to do my nipple reconstruction May 8th. I have to say I am very happy with my reconstruction and often wonder what it would have looked like if I only had done the left. I think I am much happier with the symetry and I have no nagging feelings or worries that cancer could be growing in my right breast. I know there is always that small chance of recurrence in the approx. 6% of tissue left but it is a huge relief for me! I have thought through this whole journey to do the most aggressive treatment offered to me so that I may never have to go through this again. I wanted to give the best chance at me being here to raise my two boys 3 and 8.

DX 1/2006 age 36
Stage 2 IDC multi-focal/centric (left br. 4 tumors largest 3cm) (rt.breast 6mm DCIS)
no nodes in sentinal node bx
blood lymphatic invasion
grade 2
Her2 + IHC borderline FISH 2.1
BRCA2+
Bilateral mastectomy 2/28/06 expannders placed
4x AC, 4x taxotere & herceptin
Herceptin every 3 weeks til July 2007
Lupron injections and Arimidex 5 years
11/06 had permantent implants placed
all scans clear
plan to have total hysterectomy this spring

[Mary Jo]

Hi Caroline,

In the beginning I too questioned my surgeon and onc. about prophylactic mastectomy (removing other breast that was healthy as precaution). I was told by both of them that the "chance of recurrence elsewhere in my body was greater than in that breast" so I listened and only had my right breast removed at that time. However, after all treatment was over, I had a mammogram of left breast and there was a suspicious area of calcifications near the chest wall that they wanted to biopsy. I went through a sterotactic biopsy and an INCREDIBLE amount of stress and thankfully it was all benign. HOWEVER, at that time I decided to have that breast removed. First of all I didn't want to go through that every 6 months and second, I felt as if I was just waiting for those calcifications to become cancer as often time they do.

So, that was my experience and I've never regretted my decision even once. Oh ya, on a happy note, when the pathology report came back for that breast there was no cancer anywhere found and I felt incredible relief.

Good luck in your decision process.

Mary Jo

[momdeeco]

Caroline,

Sorry about the BSO, it stands for Bilateral Salpingo-oopherectomy, in otherwards, removing your tubes and ovaries. The site for the FORCE is Facingourrisk.org, it stands for Facing Our Risk of Cancer Empowered. Good luck on your decision.

[Debra]

Caroline -

I did not want to spend the rest of my life "feeling" for a lump with my healthy breast. I know I would wake up every morning and feel for something to be there and convince myself there was. I just didn't want to live with the fear of finding another lump. My decision was easy for me. Do I miss my breasts---sometimes although I am not sure why but nothing compared to the stress I believe I would have experienced. The other gals are correct; cancer in the other breast would be a new cancer, however we are at greater risk for cancer in the other breast having had one already. My surgeon told me that I could reduce my chances of CA in the other breast by 90% if removed. Some docs may contradict that but I took that statement and ran with it!! His wife had bc when she was 41 and she too had both removed. This came from one of the top surgeons in Minneapolis that does many mastectomies. I thought if he recommended his wife to remove both, it was good enough for me!
Good luck to you with this difficult decision.

[Caroline UK]

You've all given me insights into how I need to be thinking about this question, which is just what I wanted. Also some good sound information. I think I'll be able to have a much better talk now with my oncologist next Wednesday.
My gut feeling is that once I'm more recovered from this traumatic year, I'll probably go ahead and have an elective mastectomy. It seems to me that if you have had it in one lot of breast tissue, how wouldn't the cancer 'know' about and most probably already be in the other lot of breast tissue? It's only that breasts come in two separate lumps but it's all the same to cancer cells, I'd have thought, if anyone can actually understand what I'm trying to say.
Anyway, it's been fantastic to hear from you all. I feel so lucky to have joined this site.

[saleboat]

Hi,

I also discussed this topic with my surgeon during my last follow-up. There really isn't any strong evidence to suggest that it would help my situation. To be honest about it, I am at a relatively high risk for recurrence, and if I were to do prophylactic breast surgery, and then have a distant recurrence, I would have never enjoyed 'time off' from active treatment, so to speak. I understand that some women want to do the prophylactic surgeries for peace of mind, but for me, the mammos and breast MRIs haven't been too bad. I think I retained some of my youthful feelings of invincibility, despite the sucky diagnosis. (Did this all really happen?!)

Jen

[tousled1]

Caroline,

This is a decision that you and only you can make. When I was first diagnosed I decided I wanted a bilateral mastectomy. My reasons were many -- strong history of breast cancer on both sides of family including one of my sisters and both grandmothers, I had very dense fibrocystic breasts and had previously had a lump removed from each breast (benign), and MRI of my left breast after I was diagnosed showed extensive calcifications. All that being said I do not regret my decision. It's been almost a year since my surgery and at this point I have intention of having reconstructive surgery. Good luck to you. Make sure you are comfortable with whatever decision you make.