Sue's Story - Why I Chose a Mastectomy instead of Life-time Surveillance

Sue from Ohio knew was she had extremely dense breasts. Her grandmother died from breast cancer and her mother and aunt had breast cancer.  While it could not be firmly confirmed, she believed from her family stories that her great grandmother also died from breast cancer.  

Sue already had one biopsy that was negative.  Her health care providers recommended tamoxifen to reduce her risk of breast cancer along with continued screening.  After much research, Sue, with her breast surgeon's agreement, decided to have a prophylactic bilateral mastectomy.  

Sue's Story: I always knew I had dense breasts from the report every year after my mammogram, but I never really knew what that meant until I went for an ultrasound and the technician took a record 32 pictures because she couldn’t tell what was what. The Radiologist then came in and said, “WOW you have really dense breasts!” It turns out I had 75% - 100% density. That scared me and I wondered what I could do. I also found out my aunt, her mom/my grandmother and her mother had all had breast cancer.

I made an appointment with a dedicated Breast Center locally. The doctor reviewed my records and we discussed my risks and he suggested seeing an oncologist, doing surveillance and taking Tamoxifen. I said OK, but then went into research mode. I researched Tamoxifen and decided I did not want to take it. I did further research and just happened upon Prophylactic Bilateral Mastectomy or PBM. Basically it is surgery to remove both breasts to reduce the risk of developing breast cancer.  I couldn’t find a lot of information on it in 2010, but the information I did find was positive. I made a list of all the reasons I didn’t want to do surveillance, and why I did want PBM and presented it to my Breast Surgeon. He agreed that PBM was a good choice for me.

I then saw a Plastic Surgeon and we went over all the options for reconstruction. I decided on DTI which is Direct to Implants, and to use silicone and decided that I would not keep my nipples/areola’s. I had the surgery in December of 2010 and had nipple and areola reconstruction 18 months later.  Genetic testing later revealed that I did not have a mutation.

There are a lot of reasons I did not do surveillance and wanted the PBM. 

• I did not want to live with the constant Dr. appointments, tests, the waiting and worrying. The year I had my PBM I felt like it consumed my whole life.
• The most reliable screening test for extrermely dense breast tissue is an MRI, which is costly.. I felt like I would never be out of debt if I had to do testing for the rest of my life.
• I don’t think that I really knew at the time how breast cancer works - you don’t just cut it out, have chemo and or radiation and move on with your life. Breast cancer is an insidious disease and it can lay dormant for years and then metastasize years later somewhere else or in the breast again.
• I did not want to take a medication that had all the side effects that Tamoxifen had and still have the possibility of still getting breast cancer.
• Bottom line, I remember saying this to my Breast Surgeon, I just don’t want to live like that.
• This has become my mantra, it comes from a lady who is no longer with us: “You don’t want to catch breast cancer early, you don’t want to catch breast cancer at  all.”

My recommendations for you to consider:

Never stop advocating for yourself, if I had not advocated for myself, I would be taking a cancer preventative drug, going to endless appointments, testing, worrying, waiting, and not really living the life I wanted to.

I try and “pay it forward” by being involved in closed Facebook groups, and helping them with questions regarding recovery from surgeries, preparing for surgery, questions regarding the type of surgeries I had, etc. Since they are closed groups, we are free to touch on many subjects that would not be allowed otherwise.

I want to thank Are You Dense Inc. for sharing my story and offering another option besides surveillance. If you want more information, please contact me at [email protected].