August 25, 2022
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Courtesy of Robbie Milam
More awareness of breast cancer in men is necessary so that we can get the support we need to detect and treat it sooner.
While there’s a robust breast cancer community available for women, there isn’t such a thing for men like me who are navigating treatment.
In fact, I’ve often felt isolated from the breast cancer community.
When I went in for my first mammogram, one of the women in the waiting room went up to a nurse to complain about me being there and to ask to have me moved to a different waiting room. That’s a good example of my experience overall. It’s unfortunate because of course men need support, too.
I’m fortunate to have my faith, my wife, and my children to help keep me afloat. But I think if there was more acknowledgment about men in the community, maybe more of us would get checked. And that’s absolutely crucial because breast cancer mortality rates are higher in men than women.
We’re stubborn and don’t see a doctor when there’s a lump. If there was more awareness, maybe the survival rate would get better for men with breast cancer.
My mother was diagnosed with breast cancer at age 51 and died at 54. I have the same type and my progression is the same as hers. I was diagnosed 3 years ago at age 51, and this year I turn 54 — so her experience weighs heavily on my mind.
My starting point was finding a pea-sized lump in my left chest. I found it after I had gastric bypass surgery and lost 178 pounds. I didn’t get it checked right away, and it kept growing until it was about half the size of a baseball and painful to touch. My wife insisted I get it looked at, so I went to see a doctor.
As soon as I took my shirt off in front of the physician assistant, I got walked over to a mammogram.
After that, I underwent a biopsy. I’ll never forget being in the exam room and seeing my doctor and his nurse walk in with tears in their eyes. My doctor told me I had stage 4 breast cancer. He held my hand and cried with me. Within an hour, I saw an oncologist. We decided to do chemo first because of the size of the tumor and because it had spread.
After my second chemo round, I had emergency surgery for a bowel tear, which required an 11-day stay in the hospital and that pushed my chemo out for a while. Then, after two more rounds, I went into cardiac shock.
Along with those large events, chemo tore up my skin to the point that it feels like I’m a lizard. My hair follicles are infected in some places, I’m losing my hair, and my toenails are rigid and brittle. I still have residual brain fog.
I finished chemo in June 2020. A month later, I had my first mastectomy and then did 30 rounds of radiation. I underwent a second mastectomy in December to fix some scarring issues that were affecting my mobility from the first surgery.
When 2021 started, I thought: I’m doing OK, maybe I’m beating this. But in April I found out the cancer had metastasized to my bones, and now my skull and three-quarters of my body are fully engulfed.
Not long after I got the news about the metastasis, I woke up unable to move.
The cancer had slightly spread to my ribcage and pelvis, but then it went into my spine. That led to 85 rounds of radiation, and I was back in the hospital five times with infections and other issues, in addition to ER visits. My doctors put me on a drug called Ibrance, and it worked for a little while until they did scans in November 2021 and saw that it wasn’t working anymore.
The scan of my skeleton, where cancer shows up as black and bones are white, showed more black than white, and that just kept getting worse.
In January 2022, I started taking Piqray, and then in April, there was even more black on the scans. At this point, I can feel where the cancer has started growing in new places and that’s confirmed in scans.
Right now, I have about eight new tumors, including in the back of my skull, my chest, and my ribcage. I’m in pain constantly and have no feeling on the left side of my face.
The side effects of the drugs range from nausea to swelling to dehydration — and pain meds only work about half the time. This has all been a nightmare and continues to be, physically and emotionally.
Even with all that, I could not ask for better care.
I’m fortunate to have an incredible medical team, and along with my wife and two kids, they are all lifting me up. Friends have stepped up with gifts, transportation, and funding — like many cancer patients, I’m ruined financially because of all this — and sometimes I weep with gratitude and thanksgiving at the kindness of others.
For example, I’ve always loved greeting cards. This year on my birthday in February, I got 417 cards from all over the world. I keep getting cards regularly, and that’s one of my big joys.
I was raised in the South where you’re taught to do for others, but we’re not taught how to let people do things for you. That’s a new lesson for me that’s been extremely hard.
But every bit of support I get is so meaningful, and every day and moment is important. I don’t wish this on anyone — man or woman — but I’m doing my best to stay positive and find joy where I can.
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