By Michael C.
November 2016
Recently I was diagnosed with breast cancer at the age of 45. I am one of the lucky ones. Here is my story.
My mum has been my caregiver my entire life. I have had disabilities from birth caused by congenital toxoplasmosis and spina bifida occulta. I’ve been in a wheelchair since 11-years old, have some learning difficulties and a list of other medical issues.
Twelve years ago I found a lump behind my right nipple. I had been to the doctor a few times about the discharge and discomfort the lump was causing. Each time I was told not to worry too much, because I’m a man.
Earlier this year, I was due for some blood tests with my new doctor. I thought I should show him my lump. This time I was sent for an ultrasound and fine needle aspiration. I thought to myself they won’t find anything. When I returned to my doctor on March 30, 2016 for the results, I learned I had ER+ breast cancer (stage 3 aggressive).
The hardest part for me was telling my Mum. We had been through so much together. The news hit us hard as just over 20 years ago I lost my big brother to testicular cancer. His cancer was found too late the cancer because it had spread throughout his organs and lungs. He also had the same disabilities as I have.
This was when I decided cancer could go F@#K itself. It is not welcome in my body. Positive thinking and a positive attitude are very important.
When I went for more tests and attended my pre-op appointments, I encountered major discrimination as a man. The physical therapist at the breast center was very sexist, as was the way the clinic was set up. The main waiting room was for women only. I was left in a room alone with my wheelchair out of reach from anyone else. I had never felt so alone. There were no robes for men to change into. The physiotherapist had a go at my mum for coming into the appointment. I had to tell her I have memory problems and needed my caregiver to assist. I said, “She is staying!” When I asked about reconstruction options the physiotherapist said, “Why would you want a big fake boob?”
On April 21, 2016, the day after my 45th birthday, I had my aggressive mastectomy. They also removed my sentinel node and three lymph nodes. I lost partial use of my right hand for about two months. The doctors did not expect this to happen. Also due to having congenital toxoplasmosis, it was advised I did not have chemo due to several cysts along my central nervous system. Instead the doctors are keeping a close eye on me for the next 10+ years.
When I had to return to the clinic again after surgery, I again encountered problems with the staff. I had difficulty using my right hand, and this time the therapist said, “Suck it up princess.” I had to go back five times for drainage.
Because I’m in a wheelchair, my surgeon told me I must to wear compression stockings 24/7 to help prevent blood clots while on Tamoxifen for the next 10 years. I am also not allowed to fly or drive extended periods. When I asked the physiotherapist about financial assistance with the stockings, she stated they did not want to take funds from women to give to men, so it cost me $103 a pair.
My test for the BRCA mutations came back negative. My genetic counselor had to ring the lab asking where my HER2 test results were. They told her since I am male they put my test to the side, as it was not important. I am still waiting. Also I had to have my journey kit from BCNA sent to a breast care nurse as they would not send me the kit. I did not receive it until a month after surgery.
I am feeling so much better right now. I did not realize just how unwell I really was. The Epstein-Barr virus and associated glandular fever sometimes flare up, and I was told this might be linked to my breast cancer. I’m improving every day and am looking forward to my new life. My breast cancer experience really has been a big eye opener for me. I have dealt with a lot of discrimination over the years, but never anything like this. The direct in your face sexist discrimination I’ve had to deal with since learning I had breast cancer is something I did not expect. This is why it’s important for me to share my story. I want to help others, as it was a very lonely journey for me at first, in the sense of what support there is for men compared to what is available to women.
If I didn’t have my friend Tracey, herself a breast cancer survivor, to help me find the proper services and help me through my own breast cancer diagnosis, this would have been even more difficult. I would also like to thank Cheri and Bret from The Male Breast Cancer Coalition for all the support they have given me. Without the support from my family and friends, I don’t think I would have had the strength to win the fight. Thank you.
