CHEK2 Mutations for Breast Cancer

Kanich08

Here I go again. Had BC when I was 49 on the RT, and now in the LT breast at 68. Since I had a family history of BC and everyone seems to die in my family from cancer, I opted for the genetic testing. Knowledge is powerful but living with the results are scary. IS THERE ANYONE out there that has been through this? I am told I have a 60% chance of cancer coming back. I am contemplating a double mastectomy now, as I opted for lumpectomies thus far. I have no one to talk to about this. Lost my husband to Alzheimer's last year. My kids are boys and don't want to know anything. Feeling totally lost, alone and confused. Do I get reconstruction at 68? I have fibromyalgia and are worried about implants and their issues. Implants are the only way the local hospitals do reconstruction. The more I read the more confused I get. Feel I am making myself sick or depressed again. Can't go there. I worry if I go flat that cancer cells may pop up in the few breast cells left behind and won't be discovered until it is too late as there will be no boobs to mammograph. Thanks to my genetics I am at a higher risk for colon cancer as well.

msh72

I'm sorry you're dealing with so much. I can relate to what you are feeling. I'm 51 and just had a double mastectomy with tissue expanders one week ago. I also have fibromyalgia, am a chek2 mutation carrier and have had lumpectomies and have probably had about 12 biopsy markers in my breasts over the past 20 years. After a dcis diagnosis in October, I decided I could no longer live my life in such fear all the time and opted for the double mastectomy. It took me a month to research and interview breast surgeons and plastic surgeons but found who I felt extremely comfortable with and scheduled it. The procedure was super painful, especially because of my extremely low pain threshold, and I can’t wait to get the drains removed on trust and get the pathology results back within the next week or so. Then I just want to get treated, if need, finish the reconstruction and not worry about dying from bc ever again.

It may be helpful if you can research (start with Google and Yelp) and meet with whom ever is the best (breast surgeon and plastic surgeon) in your area and consult with them. Then make your decision. Despite the pain, it’s still worth it to me because, as I see it, there is finally a light at the end the tunnel.

Also, I found a lot of vlogs and video journeys through similar experiences on YouTube. It helped me be prepared for what to expect.

Wishing you clarity, peace and divine connections!

Lmeeks

I'm 60 and getting surgery next week for a recurrence of breast cancer. I'm also CHEK2 positive. My original cancer was in 2020 and I had a double mastectomy with no reconstruction. My fear was the opposite of yours. I was afraid that I'd get cancer again on my chest wall and implants would cover it up. This recurrence is in my armpit and I found it myself. I have no regrets going flat and would choose the same thing if I could go back in time. While you can't get a mammogram when flat, you can get CT scans, MRI's or PET scans which would find anything that might be there. I didn't want to deal with implants either because sometimes they can cause problems. You just need to do whatever you are most comfortable with. Also, implants can be put in years later if you're unhappy being flat.

Resort

https://csn.cancer.org/discussion/comment/1702668#Comment_1702668

I also just had mastectomy and chose not to have implants since several people my friends know had problems with implants years later. My sentinel node was negative during the surgery thus my surgeon did not remove any other lymph nodes. However, 8 days later, the pathology report said micromestatatis on the sentinel node. So I don’t know what to do the next, go back to have another surgery to remove more lymph node or move to chemo and radiotherapy directly. Did you doctor remove any lymph node for you during your previous surgery?

Kanich08

Wow, I am so sorry you are going through all this. Doctors removed a few nodes the first time around because the cancer was invasive, but stage 1 . This time around no nodes stage 0, but cells were grade 3.

What does your doctor say? Take it one day at a time, and do what you can. Chemo really sucks. I quit it early the first time around. I was in a clinical trial and got chemo every three weeks, but was so deathly ill. I didn't get a break from being sick. CHEMO was my greatest fear this time around.

My heart goes out to you. Wish I was more helpful. Sending prayers and hugs.