Male Breast Cancer and other men's cancers: My Story

Hi All, I promised Sophia on Clubhouse to start this forum, so here I am! I want to get the exchange going about men’s health—primarily male breast cancer and prostate cancer, which I have.

A little about me: my name is Bob. I live in Connecticut. In 2012, I was diagnosed with stage 3a male breast cancer. I had a mastectomy with a sentinel node biopsy, and a plastic surgeon used a procedure called the butterfly closure to use my own tissue to build up my chest so it wouldn’t be concave; it would just be flat. While the plastic surgeon was closing me, the breast surgeon (I love them both) saw that the sentinel node and 2nd node were positive for breast cancer, and she removed those and 12 others—a total of 14. Seven of the nodes were positive for breast cancer. After some recuperation in the hospital for three days and then home for about 18 days, I had the JP drains pulled out. The drains collect the serosanguinous fluid from the surgery. I then met my oncologist, who scheduled me for 18 weeks of chemo. Once every three weeks. It consisted of Adriamycin (all breast cancer patients I know refer to Adriamycin as “The Red Devil”), Cytoxin, and Taxotere. I had a reaction to the Taxotere with the first drip or two. They stopped the IV and put me on lots of Benedryl and steroids. They called it, “lung spasm”. I’m telling you it felt like a heart attack. They restarted the IV after about 30-45 minutes after letting the Benedryl and steroids do their work, titrating the IV slowly until they got it set to the full running dosage.

After about 2 weeks, I started 25 generous daily doses of radiation. That was easy-peasy compared to Chemotherapy. 25 minutes in and out total. It did leave me with a (sunburn-type) burn. Some people get it worse than others. The first 10 doses (days) of radiation, they used a gel pad that mimics skin and keeps the radiation closer to the surface to kill off and cancer cells there. And then doses 11-25 they didn’t use that pad. Now, I’m a hairy-chested guy. I now have a square patch where that pad was placed that not only got the worst of the burn, but I now have about ten hairs in the 1-foot square patch. And it’s been nine years. Oh well. It helps show off my mastectomy scar. Once my chemo and radiation were done, my medical oncologist put me on a hormone suppressant drug called Tamoxifen. My cancer type was ER/PR+, HER2-.

So my breast cancer was feed by the estrogen and progesterone in my body. Being heavier than most, I probably had more estrogen and progesterone to feed my breast cancer. At the time, the dosing guidelines were changed from a 5-year regimen to a 10-year regimen. Lucky me! But I relegated myself to the fact that I was going to ask if there was any reason NOT to stay on it longer than ten years.

In 2016, my blood work showed my PSA climbed to an all-time high of 7.7

The urologist referred me to a urologist who specialized in managing prostate cancer cases. We have been taking the watchful waiting approach. I have had a couple of MRI Ultrasound-guided prostate biopsies. The last one was a couple of years ago now, and the biopsy came up with no cancer in any of the samples.

Fast forward to September 2020. I go in to see my oncologist for my yearly visit. It was his last week at the practice he was working at before leaving to take a position at a large hospital-based oncology practice. He ordered a routine CT scan of my chest. He is following a few spots on my lung and an enlarged thymus. An hour and a half after later, the oncologist called me and said, “Bob, we need to talk about this CT scan.” At that point, he told me I had stage 4 metastatic cancer. I had a mass on my left chest wall, my left 2nd rib, a lymph node, and a nodule in the right lung.

I’m doing well on my treatment for my metastatic cancer. I had a PET scan three months ago (Jan 2021) that showed improvement. I have another PET scan coming up on May 26th, 2021, to see if the treatment is still working. I feel good, actually. Tired and fatigued due to the treatment but feel good otherwise.

My PSA has dropped to 1.8 now; one or two of the current drug regimen for my breast cancer also acts on prostate cancer. So, the urologist I see now said we can hold off on a biopsy for the time being.

Please share your story, comment on mine. Just remember, this is a safe space—an extension of the Men and Mental Health room on the Clubhouse app. Feel free to reach out on Facebook, Instagram, or Twitter.

Editing here to add the instructions on how to do a male self breast exam:

How to reach me:

Facebook: https://www.facebook.com/bob.devito

Instagram: rmdevito

Twitter: @bobdevito

Cash app (Tips): $rmdevito

Warmly,

Bob DeVito

This black and white photo is courtesy of David Jay Photography | The SCAR Project