
By Jack Warner
March 2016
In January 2015, I noticed my right nipple looked very different from my left. When it didn’t change or go away, I did some online research where I learned that an “inverted nipple” might be an indication of breast cancer.
On April 15, I went for my normal check-up with my primary physician. He palpitated my chest (I hadn’t felt anything) and sent me for a mammogram. I was more worried then.
When I had my mammogram, the radiologist said, “Well, this is concerning.” At some level, I sort of knew what the diagnosis would end up being, but I told no one about it. The lump was biopsied. Immediately after the procedure, my surgeon told me that while the results were not yet confirmed, “We’re going to proceed on the assumption that you have breast cancer.” In discussing how I’d come to this point, I mentioned the nipple and my surgeon advised me, “Well in men, an inverted nipple pretty definitely indicates breast cancer.”
I had a meeting for work, a manager’s meeting with the US Department of Labor, around that time. I found it difficult to discuss my cancer with friends and colleagues. This is because no matter what or how you say to someone that you’ve been diagnosed with cancer, what they hear you say is, “I’m going to die.” I felt guilty about throwing a wet blanket onto our work dinner after a long day of meetings.
When I returned from my business trip, I met with my surgeon at the Rutgers Cancer Institute in New Brunswick, NJ. One of the things I was learning was that health care people “soft pedal” prospective bad news. My primary care doctor made it sound like just the lump would be removed. No, I found out, I was going to have a mastectomy. My surgeon told me that if the tumor was Stage 1, I probably would not need radiation or chemo. Hm. More on that in a minute.
It was especially hard telling my children, who are both grown adults. When I spoke with my daughter, who lives on the West Coast, I could hear in her voice she was quietly crying. No matter what or how you say to someone that you’ve been diagnosed with cancer, what they hear you say is, “I’m going to die.” I did have genetic testing, and was negative for any BRCA mutations.
On June 1, 2015, I underwent a mastectomy at 59 years old. I never doubted I could beat cancer, but I was worried I might die of some complications during the surgery (too many medical dramas on TV I suppose). Surgery went well — the tumor was Stage 1 and an examination of the lymph nodes showed no cancer in any of them. Despite post op pain (and that annoying, awkward drain they put in when you have a mastectomy), I clung to my surgeon’s forecast I was through with treatment.
Ha! When I met the oncologist whom I’ll be seeing for the foreseeable future, I was initially thrilled to hear her say, “You’re cancer free and it’s my job to keep you that way.” Of course “keeping me that way” meant 12 weeks of chemotherapy — Taxol and Herceptin.
Eventually I was pretty worn out by my chemo, but I completed the course. I will be getting Herceptin every three weeks through July 2016. This immunotherapy has no side effects unlike those caused by chemo, so these are easy days.
When I stopped getting Taxol I started taking Tamoxifen orally. One of the possible side effects of that drug is blood clots. Got one! So in addition to everything else I’m taking blood thinners. Anastrozle (Arimidex) replaced the Tamoxifen, and the blood thinners make my infusion days a bit more interesting!
The other side effect I was left with arose from the surgery. I developed lymphedema, which caused my hand and right arm to swell. Now I have a glove I wear when I sleep, plus a compression sleeve I wear at the gym and for three to four hours a day.
I’ve had some minor ups and downs, but I am doing well. As I write this, I have worked out in the gym 20 of the past 25 days. My hair, which thinned but was never completely gone, has come back. I’m still slowly balding though. Genetics, not chemo!
In the autumn, when my oncologist asked about any fatigue, I said I had gone to the gym and then raked leaves on Saturday and after two hours of raking leaves I felt worn out. She replied, “You finished chemo six weeks ago and you worked out for over an hour and then raked leaves for two? That’s fabulous!”
The things I’ve learned from having Male Breast Cancer?
1) You hear “everybody is different.” Absolutely true. Even people with the exact same tumor composition and Stage will respond differently to treatment. We can empathize with other patients, but can’t predict what will be easy or difficult for anyone else.
2) Get an oncologist you can believe in. When friends or loved ones tell me I look good, I wonder if they’re just trying to bolster my spirits. When my oncologist says, “You’re doing really well,” I can almost dance out the door.
3) Only 1% of breast cancer patients are men. Embrace your celebrity. Every nurse in the infusion center knows me by name. One day when it was getting late in the afternoon and nurses were discussing what treatments had to be completed, I heard one say, “It’s just Jack and the other Taxol patients. Should be done by 4.”
4) Believe in being cured. I have a buddy who was treated for male breast cancer 15 years ago. He makes me confident I have many years ahead of me. Chances are you do too.
Thank you for sharing your story. I am a RN and PhD candidate at the University of Connecticut. My research topic is men and breast cancer. The intent is to educate the medical community and public regarding the unique challenges and barriers to care for men with breast cancer. There is very little research regarding men and breast cancer. I hope you would be interested in being interviewed for my research. If so, my E-mail address is lnemchek@yahoo.com
Good luck on your journey,
Lisa Nemchek, RN