Looking for input to my decision to have a double mastectomy

Sisterbydesign

I’m new to this site...so if this is a repeat post,I apologize. I am considered high risk in that my sister and mother were both diagnosed with breast cancer at the age of 45. My mother was a 17 year survivor and unfortunately breast cancer did end up taking her life. I have had multiple needle biopsies through the years, an incisional biopsy in my right breast, and a few MRIs. I have recently been diagnosed with atypical hyperplasia on my right breast and my surgeon is wanting to perform an incisional biopsy. I decided to have a bilateral mastectormy with expanders and implants. My surgeon told me that my decision is uncommon, but I still feel it necessary to do this. I have doubts of course..I’m not 100 percent about my dedecision...anyone else decide to do this? How crazy am I? I

farmerlucy

My story is similar except that my mom presented at 27, her sister at 42. I found out I had ADH and ALH at 51 after a failed biopsy for discharge two years earlier. I was ready to have PBM. I had to push my doctors. Good thing too,since they found an undetected IDC in the pathology from that extremely dense tissue, despite blue ribbon screening.

I think your decision is quite reasonable.

Meghope611

I found out earlier this year that I am BRCA1+ and then after my second preventative screening found out I had a small (but aggressive) breast cancer tumor. I had a BMX though I struggled with keeping the right in hopes of breast feeding another baby. I will say I really wish I had done the BMX before the cancer formed because even though the tumor was small I will always be worried about metastasis and as of now they don’t have a cure for that. That being said, the BMX i no picnic and does have some lifelong effects (eg, risk of Lymphedema, loss of function of chest muscles, loss of sensation in breasts) and that’s without complications. So really just learn all you can about both options and do what you feel is best for you Your doctor isn’t the one who has to live with this decision!

In either case there are great support groups, including for those of us with hereditary cancer risks.

Best of luck and be well!

acesmith

hello, I found out that I am BRCA1+ after my cousin passed away at the age of 32 in may of TN breast cancer. she was also BRCA1+ after further genetic testing her father (my uncle) and my father were both BRCA1+ after researching and knowing my family history (breast cancer is also on my moms side, different strands, not BRCA) I decided to undergo a double mastectomy and reconstruction. a very difficult decision but also a no brainer for me. I'm only 26.

I don't think you are crazy at all. I think you are strong and are being proactive! best of luck to you

Icietla

Not crazy, Sister.

GagasDaughter

you are not crazy, just looking out for your health and your future.

My story is much like yours. My sister was diagnosed 8 1/2 years ago with stage 1 IDC at age 38, with no known family history (although our maternal grandma had died of some metastatic cancer that had spread throughout her abdomen by the time it was diagnosed in her early 70’s. . There are very few female relatives on either side.) 18 months after my sister was diagnosed, our mom was diagnosed at 66 with stage 4 IDC that had spread to her bones, lungs and liver. She went through multiple rounds of chemo and was put on pretty much every drug they currently have for Advanced breast cancer, but this July, I took Care of her in her last week of life, as mets had taken over her lungs, brain, liver and lymph nodes. Breast cancer took away her independence and took her away from her grandchildren much too soon,

Since my sister’s diagnosis, I started getting annual mammograms at age 36, but due to extremely dense breast tissue, they recommended alternating that every 6 months with an annual breast MRI. I have been member of the “Every 6 month club” for 8 years. During two such MRI’s, including the MRI I had two weeks after my mom’s death, “suspicious lesions” were found. This led to f/u US, which led to biopsies. By this point, I had nicknamed my right boob “Frankenboob” due to the biopsy scars, and I felt like I was getting a mastectomy done one chunk at a time (and at the cost of a LOT of anxiety). Ironically, it was around the time of my most recent biopsy that both my PCP and my breast surgeon asked me whether I had considered a prophylactic mastectomy, even though my sister tested negative for any breast cancer genes. My BS referred me to several local PS, one of whom does DIEP. My BS brought up the perks of having a BMX done before you develop cancer- no lymph node dissection, you can do a nipple-sparing procedure, and you can have immediate recon without worrying about the effects of radiation or chemo. I did a ton of research, and decided upon the bilateral NSM with DIEP (BTW: I am 5’5” and 125 lb and everyone told me I didn’t have enough abdominal fat fir DIEP. I met the surgeon, and he thought I had just enough for two nearly-B cups, which was my current size that I did not wish to change)

I had zero trouble getting my HMO to authorize the procedure, even with the PS being out of network, I had the surgery this past Monday and came home last night.

There is a LOT to consider with this type of surgery. I needed a blood transfusion and am in the worst pain of my life. I have to take at least six weeks off work and it will be longer before I can resume my usual workout routine. However, I also will no longer have to face the anxiety of another abnormal MRI or biopsy. And most importantly, (I hope) my boys will never have to watch their mother succumb to this horrible disease.

Good luck in your decision-making

Kerri_Oz

Sounds perfectly rational to me. I am working towards the same thing. I've had mammogram that led to core needle biopsy that showed ALH/LCIS, then ultrasound that also led to core needle biopsies that showed fibroadenoma with complex features, which led to an MRI which shows a marked degree of parenchymal enhancement in both breasts. Whilst none of these things are actually cancer, they are all strong indicators of risk of developing cancer. Add to that a strong family history, and I feel like I'm walking around with a couple of time bombs sitting on my chest.

You have to make the decision that is right for you. Personally, I couldn't cope with years of heightened vigilance and 6 monthly testing, etc., so for me, it is the right decision. Only you can decide what is the best way forward for you.

Treesamia

Hi: You are not crazy to consider this option. It may seem drastic but only you know your tolerance level for living with cancer risk. Do you have the BRCA mutation?

My sister, daughter (25) and I all have the BRCA2 gene mutation. My sister and I found out in 2006 and had our oopherectomy surgeries at that time since ovarian cancer is so hard to detect. My mom had bi lateral breast cancer and my paternal grandmother died of breast cancer, so we are not sure which side of the family the gene mutation is from (plenty of other cancers on both sides as well). We've chosen surveillance over the years, however I have finally made a decision to go ahead and have the PBM this month. Several factors influenced my decision: My doctor told me that frequent MRI's with contrast have been shown to leave metal deposits on the brain, (I've had 10), and they are not sure what that means but it can't be good. Also I am going to have a fat grafting procedure, which is less invasive than flaps (implants are not an option for me). Plus I am around the age my mom and grandmother got their cancers. I just don't want to live waiting until I get the cancer diagnosis. I feel empowered to do something about it now.

I wish you luck as you explore all your options. You may want to check out the FORCE.com (facing our risk of cancer empowered) for some additional info.