When I was about 10, I caught sight of my mother coming out of the shower. Where her breast should have been, was nothing except purple skin and scar tissue. That image is still burned into my brain.Treatment in those days consisted of a radical mastectomy and intense radiation – very mutilating and rarely effective without modern-day chemotherapy and hormone blockers. Only a couple of years later, Mum was admitted to hospital, the disease having metastasised, and she died, aged 40.
Fast forward 50 years. “I’m sorry to say, but you have breast cancer.” When I heard that diagnosis from my family doctor in March 2014, I was not overly surprised. Ten years earlier a mammogram of lumps in my left breast proved negative, and after feeling lumps again, I’d convinced my doctor to order an ultrasound. A biopsy was scheduled and I was subsequently deemed to have Invasive Ductal Carcinoma with dermal lymphatic invasion, Stage IIIB, Grade 3, ER+/PR+, HER2-. My first reaction was to search the Internet for any information on my disease, and particularly in relation to males.
Because the breast became inflamed, the surgeon decided that she would send me to the oncologist to begin neo-adjuvant treatment, where chemotherapy precedes surgery. The treatment lasted 18 weeks, and was one day each three weeks. There were three lots of FEC (Fluorouracil, Ellence, and Cytoxan) and three of Docetaxol. I have to say, that chemo went very well for me and I tolerated the drugs without the various dreaded side effects. I understand that modern anti-nausea drugs have helped people cope and I felt grateful for that. I consciously decided to keep doing my work as though nothing was happening. While hair loss and a “chemo look” were the most obvious outward signs, inwardly I felt strong. I even had the energy to embark on various building projects, which was a distraction from the treatment. And I was fortunate to be supported by my partner and by an online network of cancer support groups.
The Surgery that followed was extensive. Since 2/23 lymph nodes were tumorous, all those under my arm were removed along with the breast tissue and muscle. I was lucky to have a very skilful surgeon, and she was bemused when I asked “if there was any reconstruction?” While it is possible to rebuild a facsimile of a guy’s breast, she explained, the lack of extra breast tissue makes it harder and actually inhibits the surgeon who really has to work hard to round up the affected tissue, since cancer often travels further in male breasts.
Following chemo, I started 25 radiation treatments, five a week for five weeks. Again, this was more of an inconvenience than a bad experience, and I understood that this treatment was “insurance” in that it was aimed at rounding up cancer cells in my skin and in the chest wall.
Now, aged 65, and well settled on the recommended Tamoxifen regimen, fortunately with none of the listed side effects, I’m optimistic about my future. I feel that I have been lucky to have had such excellent treatment in my rural area without having to travel to a major center. Interestingly, all the doctors and associated medical personnel treating me were women, and I found this very reassuring.
After genetic testing, I was found to have a variation of the BRCA1 gene, which is, as yet, unclassified. With breast cancer in my family history, I have made my siblings, kids and other relatives breast aware, so that they know to screen themselves regularly. While I didn’t want to worry people unnecessarily, I didn’t want to underplay the threat to them either. My daughter, who is 43, is in a breast screening program, although she hasn’t had a gene test. Recently I have been fortunate to be included in a study to find out the differences between men and women’s experiences in having a high cancer risk due to BRCA 1/2 gene mutations. Learning more about the genetics of the disease has taught me how important it is to include both genders in the discussion, since both play an equal part in passing on genetic mutations.
After treatment, I was invited by Cancer Council Queensland to become a Cancer Connect volunteer to help other men come to terms with their diagnosis and treatment. I attended a two-day training seminar in my nearest city, Brisbane, and now telephone counsel men who request support from a guy who has been through the medical system as a breast cancer patient. Also, I’m on a roster to visit patients in the oncology ward of my local hospital.
Lately, I’ve become a patient activist because I can see breast cancer groups are so fixated on using pink to denote breast cancer, the community is not aware that males get the disease as well. Men have a poorer prognosis because they are diagnosed later due to their reluctance to present themselves, and since their health practitioners are not recognizing symptoms of the disease early enough. There is also no screening program for men. And lack of male-specific clinical research and trials means that treatment for men is based on that for women.
As a man who is happy to talk about his breast cancer diagnosis and treatment, I am always quick to point out that the care I received was first class and as equal to that of the many women I was treated alongside.
We all live in hope that this disease won’t progress, but when I last visited my oncologist for a checkup, the smile on her face said it all for me. I am now good friends with several guys coping with the disease and I see one thing in common with them is that we are busy getting on with life, counting our blessings and living each day to the max
Rod Ritchie is a Sydney-born writer, Internet publisher and patient activist