Bilateral mastectomy vs. high risk screening?

Hi FallRisk and welcome to Breastcancer.org,

This is surely a tough decision. However, you've joined an incredible Community here, and will surely be met with lots of helpful support, advice, and experiences from our wonderful members shortly.

Welcome, and please keep us posted on what you decide!

--The Mods

Hello. I just found out that I have the Chek2 mutation. Wish I had known it when I was deciding on surgery. I went with a lumpectomy on the cancer breast. I had two tumors, something I read is more common with Chek2. The surgeon at the time told me that my outlook was the same whether I went with lumpectomy or mastectomy. At the time we didn't know about the Chek2. Had I known at the time, I might have opted for a bilateral mastectomy. Now I'm feeling like a ticking time bomb......

FallRisk, Have you had an MRI of the "healthy" breast? Are there any indications of possible problems already? I do not know whether I have chek2 or not (but I don't have the BRCA gene), but I did in fact have synchronous (at the same time) bilateral invasive disease, although at a much later age (66) than you. I was not given the option of a lumpectomy because of the size of the IDC and the accompanying DCIS in the first breast -- I had to have a single mastectomy no matter what. However, a very suspicious radiologist pressed on although nothing showed on either mammography or the ultrasound of the "healthy" breast. He found suspicious patterns on the MRI -- very early indications of trouble, and to make a long story short I had the double mastectomy and I in fact did have another but very small invasive tumor in the second breast.

Besides your chek2 gene, another factor to consider is what type of cancer you had this time. If it was hormone positive, you are likely to be given tamoxifen, which will reduce not only risk of recurrence of this first tumor, but also of contralateral disease.

I guess what I am trying to say is that a good radiologist and good screening are likely to catch trouble very early and hormone therapy may reduce your chances as well. It seems to me that you do not have to make this decision right away. A BMX may give you peace of mind, but at considerable cost. Only you can make that judgement, of course, but if you decide not to do the BMX you can change your mind at a later date if the worry proves intolerable. At your age, reconstruction may have excellent results, but is not without its pitfalls. I think many women are not clear that they will also lose all breast sexual response, and the value of that is highly personal.

I am afraid I have not clarified much, but I wanted to share my observations. I am very sorry you are facing such a choice at such a young age. My own experience is that in a year or two you may find that the current "emergency" state you feel will have subsided and you may be ready to make a more informed choice then. All my best wishes.

Hi Fallrisk. I'm sorry to hear about your situation and feel I am in the same boat although slightly more similar to SuzyGirl in that I have simultaneous bi-lateral independent bcs (both DCIS and IDC w/ differing types of hormone receptor status).

I had a double lump, but didn't get clear margins so now have to decide if I am going to go back in fora DL or DMX and am really struggling with the decision. While all of my genetic tests are neg, the chances of getting. Dual simultaneous are slow and cause for pause. Not a lot of stats out there.

I don't want to buy time with radiation b/c I feel that after if I need a DMX down the road that will make reconstruction so much harder, riskier and cosmetically challenging. At the same time I hate the idea of losing sensation.

Does anyone know if radiation causes a loss of sensation too? Does anyone have any DMX after radiation success stories?

Thanks for any support and FallRisk, I wish I could be more helpful than just letting you know you are not alone. One day I'm convinced I'm doing one and then the next I change my mind completely.

Thanks everyone.

Hello iledere, Welcome to our community. We are glad that you reached out here. We are inserting a link to information about Radiation Therapy that is on our site. We hope that you will find some support and information here. Stay connected. The Mods

So I'm not really one of those people to blog, but I was looking through here for anyone having similar side effects after a reconstruction and saw this.

No one can tell you what you should do. It has to be your own person decision.

I was diagnosed last year with a mutated ATM gene that put me at higher risk for breast cancer. I saw 5 different doctors in my area, including the genetic counselor and no one had seen this mutation. Because of this and having all 5 doctors agreeing that a mastectomy was the way to go, I had a prophylactic double mastectomy w/expanders put in, in Jan of this year. I chose to do it sooner than later because I am 44 and only will get older with recovery harder & I also have other autoimmune dieses that made it easier to decide now. In June I had the switch surgery to take out the expanders and put the implants in. I chose silicon "gummy bear" implants. I have had many surgeries in my life, but this was by far the worst. The hardest was getting passed the fact of really not having breast anymore. They do not look like natural breast or feel. I don't deal with too much pain anymore, just more tightness or comfortableness. My biggest complaint now is that something has happened to the right implant/breast. With talking to my nurse at the plastic surgeon's office, my skin has probably grown to my pectoral muscle so I can either live with it caving in every time I move my right arm (which I can't do) or I will probably have to have another surgery to remove scar tissue or have a fat transfer to separate the skin from the muscle. I still know I made the right decision, but it is very trying to stay positive everyday.

Good luck to you with making the decision. Let me know if there is anything else I could advocate for you.