Diagnosed with DCIS after first mammogram. 32 yrs old.
Hi all. Sorry for the long post but just want to share my story.
I previously joined this forum when my mother was diagnosed with breast cancer (age 70) last October. Now…. I have my own diagnosis :(
After my mother's diagnosis her hospital offered me a genetic test and I tested positive for a double chek2 mutation. I had a genetic counseling call and was told this is a more rare mutation and that having two mutations is even more rare and under researched. From what is known, it was recommended I start breast cancer screenings now rather than wait until 40.
I had my first ever mammogram in Feb of this year. The technician told me it was common to get called back for follow-up tests because this was my first mammogram. So, when I was called a few days later and asked to return for an ultrasound, I didn't think much of it. I was shocked to hear at that ultrasound appointment that they found something that might be cancer and it would require a biopsy. A few weeks later I returned for a core needle biopsy. The results came back "intraductal papilloma with atypia". The nurse told me that because I am high-risk with my mutation they would want to surgical remove this papilloma.
I had to wait four weeks for a surgery consult appointment and the surgeon told me there was a very small chance this was actually cancer, but it could be.
On April 21st, less than a week ago, I had my excisional biopsy surgery. Yesterday I received the pathology report - DCIS (stage 0). ER and PR positive.
The silver lining is it is stage 0 and they already removed the cancerous cells with the surgery I had last week. But…. now I have to decide how to move forward with my treatment and I'm feeling lost about which decision is best. My surgeon explained I have two options:
- Radiation now. Followed by 5 years of tamoxifen and continued high-risk screenings every 6 months.
- Mastectomy with no follow up treatment. (now or at any point in the future)
A huge part of my dilemma is I am only 32 years old and I have no children. My husband and I have not made a decision whether or not we want kids. It's something we have seen as a possibility but not decided either way. If I start taking tamoxifen, I would absolutely not have the option of getting pregnant in the next five years because that mediation can cause birth defects. Again - I wasn't totally sold on having kids for sure - but I hadn't really made up my mind yet. A part of me doesn't want to have kids because with two genetic mutations I have a 100% chance that my mutation would be passed on to any biological children (just 1).
I'm terrified of a mastectomy. I helped my mom recover from hers just a few months ago and saw firsthand the aftermath of the surgery for her. I'm also worried about my self image and self esteem with this option.
Thank you for reading.