Diagnosed October 2007
Male Breast Cancer MUST Escape from the Sea of Pink
I am a 63 year old retired physician in Ottawa Canada.
In October 2007 at age 55, I found a lump on my chest wall. Some distance laterally to the breast. Saw my GP and was diagnosed with likely right breast cancer. I had a needle biopsy in December… was very painful so they stopped after one pass instead of 8. (I have a heightened sensitivity to pain after a neck fracture age 24 with residual spinal cord cyst.)
The result was infiltrating lobular carcinoma with focal perineural infiltration
Right Mastectomy and sentinel lymph node biopsy January 2008
1.3 cm grade 2 invasive lobular carcinoma, estrogen and progesterone receptors positive. HER-2 negative, lymph nodes negative
Stage 1 T1cn0
I was offered a choice of Tamoxifen or Arimidex (anastrazole). I was warned that with my chronic pain condition the Arimidex could worsen the pain. So I chose Tamoxifen, which I took intermittently for a year. Side effects were decreased libido, fatigue, and superficial phlebitis feet. Also worsening depression.
We discussed chemo, but with maybe 5- 8 % increased 5 year survival with 1% risk of death, I declined. Radiation was not recommended.
Years later I discovered this website and spoke to Herb Wagner. He said he never met a man who tolerated the tamoxifen a whole 5 years without experiencing some of the major side effects.
My oncologist was good but she had limited experience with MBC.
I was fine on no treatment and was discharged from follow up in late 2013.
But I had developed new back and rib pains which were thought to be related to my chronic pain condition. However my chiropractor was concerned so I convinced my pain doc to sign the MRI of thoracic spine requisition that I filled out (I am a physician).
It showed widespread bony mets of Thoracic spine. I had a good cry in my chiros office when he read me the bad news. I knew it was a death sentence for me. Going back to the same oncologist, I had some anger at being disbelieved by her and my chronic pain physician. I was given 2-3 years to live.
I have been through a course of chemo and radiation. So much of my bone marrow is involved that I need transfusions every month, have chronic low white and red cells and platelets. I recently had a bowel obstruction from spread to the abdominal cavity and intestine. I have recurring ascites (fluid in peritoneal (abdomen) cavity. And severe lymphedema of the legs.
I was not able to qualify for a study with IBRANCE (palbociclib) because I am male. Same story with other studies. I now access it on compassionate grounds.
I firmly believe that had I chosen Arimidex over tamoxifen initially I would have another 10 years without recurrence. I did end up on Arimidex in 2014 with no side effects.
The other factor in my story is that I went through a divorce and toxic child custody battle about the time I was diagnosed. Which I lost. I know 2 other physicians in Canada who died of aggressive cancers through the same circumstance. Massive stress of losing your children will hammer an immune system.
And you need a good one to fight cancer.
So I wish I had found Herb Wagner at www.malebreastcancer.ca in 2008. Possibly the website was not quite up in early 2008? And I would still be taking Arimidex with good health.
My plea is for all newly diagnosed men to find a good support group and dig to get the right treatment.
I am so happy to see Dr John Boyages emerge as a specialist in male breast cancer. Even if he is in Australia. I certainly would have asked him for a second opinion.
I likely have a few months to live if I am lucky.
I take life a day at a time and try to control negative thinking, especially the what ifs and resentments.
I do each year the MOTORCYCLE RIDE FOR DAD. It is to raise funds for prostate cancer research and awareness. But now I have to do the ride in a car with the top down. My spine does not like the bumps on Canadian roads from a bike.
It allows me to give back and who knows, some of the research has already helped me with a different disease.