For #BCSurvivorAppreciationDay, United Breast Cancer Foundation is pleased to share with you Bob D.’s journey with breast cancer.
“My name is Bob D. I’m gay and I’m married to my best friend, Tony. I’m a 4-year stage 3a male breast cancer survivor and was recently diagnosed with early stage prostate cancer. I’m currently on active surveillance for prostate cancer. I am so happy that United Breast Cancer Foundation has shed light on male breast cancer in a PSA during the 2016 Indy 500.
As for my story, I went through all the things women go through. I called attention to a small pea sized lump to my family doctor, probably in approximately 2009. Fast forward to 2012; I’m in my doctors’ office for an impacted ear canal and somehow remembered to say to him, “what about that small lump? It’s bigger and is starting to hurt to the touch.” He had two medical students and a nurse he was training that day. We were all gathered in a small exam room.Each one took a turn irrigating my right ear as we talked about the lump near my left nipple.
Water was splashing everywhere adding some comic relief. He had me bare my chest. He muttered something to the medical students about an inverted nipple. Well, I knew that wasn’t a good thing. Not normal at least. I looked down and noticed that my left nipple had turned down a little and was a bit grayish compared to the right one. I should mention that two weeks before this office visit,
I’d felt an enlarged lymph node under my left arm while I was soaping up in the shower.
I immediately started to cry a bit knowing that my mother had been diagnosed with breast cancer and had passed away a few years earlier. I quickly tried to put the thought that it might be cancer out of my head. I should mention, by the time I’d come into the doctor’s office, the “swelling” had gone down. I thought I might have dodged a bullet. But, I knew men could get breast cancer and I had a feeling that I might have fallen victim to it as well. I hate the word victim but it seems to fit in this part of the story.
To continue, the doctor got more serious than he usually is and said I needed to see a surgeon at the hospital down the street as soon as possible. His office was in the breast care center at the hospital. A beautiful new building that now lost it’s luster for me. The office called to make the referral. I was told by my doctor, that, “If they try to put me off for a week or more, tell them I said you need to be seen immediately.” Wow! Now I was thinking the worse. So first I was sent for a mammogram and ultrasound. The tech seemed to be having trouble and was trying to get the correct angles around my nipple to view the tumor. She called in the (female) radiologist who repeated the ultrasound. At this point, I am really thinking the worse and had that look on my face. You know, that look of horror when you know what you might be dealing with, with a tear for good measure. She said to me, “What’s the matter? in a harsh tone. I said, “I’m scared. You are looking at a lump on my chest”. She replied heartlessly, “Oh.” I was not impressed with her insensitivity. And of course, the mammography room was decorated in hues of pink. I don’t recall the color of the gown. The radiologist said, “I’m going to call the results over to your doctor right now. I know it’s late on a Friday but hopefully, I’ll catch them.” I replied, “Okay” and went out the door.
A week later, my family doctor called telling me he’s going to refer me to a surgeon in that same building. He’s good, blah, blah, blah. They called while I was in the movies for an early showing. I stepped out to take the call. They tried giving me an appointment that was like two weeks away and I told them my doctor insisted I be seen as soon as possible. They squeezed me in on a Wednesday afternoon. At that appointment the doctor and I talked. He did a physical exam and said, “I’m going to want to get a biopsy.”
I said, “okay, when can we schedule that?” He said, “I’m going to do it now.” I recall telling him I wasn’t mentally prepared for it but “okay, let’s do it.” He did a core biopsy on the tumor. That hurt like I’ve never hurt before. I thought he’d taken the nipple off right then and there. But it was just referred pain. Then he took a fine needle aspiration of the two suspect lymph nodes. The huge one that had resolved itself and another one that they identified as a suspect. The doctor called me that Friday afternoon. I was in the parking lot at Walmart. I told him to hold on a minute while Tony and I loaded our purchases into the car. We both got in and I told the doctor I was ready. The doctor said,
“It’s not good. You have cancer.”
I started to cry. Tony knew I was getting bad news and he started to cry too. The doctor went on to tell me what he might do. Including taking the nipple and all the lymph nodes. His voice seems to fade into the sound of the Charlie Brown teacher, “Wah Wah Wah Waaaah”. I wasn’t catching much after he said the word “cancer”.
I was thinking three things:
1) I might die,
2) I’m going to be disfigured by a mastectomy and
3) I have to let everyone know about male breast cancer so they aren’t caught off guard like I was.
The surgeon said he’d have the girls in the office call me shortly to schedule an appointment to see him to discuss surgery and treatment. He was a nice enough guy but I wasn’t liking the news he’d given me. So I went to the appointment about a week later and spent about 2 hours with him. Boy, did I back up the waiting room. But, he or his staff should have planned better. During the appointment, he told me about the surgery. I was clutching a questionnaire I’d found on one website. It was what to ask your doctor before surgery, at the time of surgery and after surgery. I got to the question, “Who can I see for a second opinion?” He looked a bit disappointed for a moment. He then gave me the names of three breast surgeons closer to my home. I didn’t know any of the names of course and I asked a few friends about them.
It was luck of the draw that I chose Dr. S. She was (and is) wonderful. She is an expert at her job as a breast care surgeon. Her staff booked me for the last appointment of the day at 5PM. She did a physical exam and ultrasound to confirm the diagnosis and then she, her medical assistant, and I sat at a round table in a nicely appointed room until 8:45PM. She drew on paper and explained four options. Then eliminated them one at a time based on my case. She told me that my best option was a non-nipple sparing radical mastectomy with a sentinel node biopsy. She explained that while I was under anesthesia, she’d inject this special blue dye into the lymph nodes. It was spread to all the lymph nodes and the ones that had cancer would “light up” with this blue dye. If needed, she would then do a lymph node dissection to remove any positive and possibly positive nodes. I went alone to this appointment, as my husband, Tony, had to work. So, I asked if I could dial him up at work so she can summarize for him what was going to happen. She was very willing to accommodate the request.
So, on June 13th, 2012, I had a radical non-nipple sparing mastectomy with sentinel lymph node biopsy and lymph node dissection. She found fourteen suspect lymph nodes and removed them. Seven of them were positive. This basically, made me stage 3a. After I’d healed up from surgery a bit I had six rounds of chemo (ACT) and 25 doses of daily radiation. The chemo wasn’t bad. They controlled nausea ahead of time with a medicine called Emend. The radiation burned my skin, like a bad sunburn. They gave me a special cream to put on the burned area.
The first ten visits they put a special pad on the area. They told me that was to concentrate the radiation to the surface of my skin. The other fifteen visits they didn’t use the pad anymore so the radiation would get deeper. Today, there is a square patch of skin that has basically about ten baby fine hairs. The rest of the area is bald as an eagle. I mention it only because it only adds to the asymmetry of my chest. I’m now on a 10-year regimen of tamoxifen with all of its side effects. Yes, I get hot flashes. They are terrible. Makes me sweat like a pig. I hate it. And then there is the joint pain.
The chemotherapy gave me what is called chemo brain. I still have trouble with it. It’s not as bad four years later but I still have my moments where I just draw a blank when speaking or typing.
You know, can’t come up with a name or a word. Something or someone very common, and should roll right off your tongue but doesn’t.
In conversation, I’ve called my urologist my gynecologist. Where did that come from? I just looked at my husband, Tony and said, “Oh, You know what I mean.” after he looked at me blankly. I’ve referred to the washing machine as the dishwasher and vice versa when I’m looking right at them. The examples go on and on. So, four years later I still blame chemo brain for everything. But I later read that there is a similar occurrence with Tamoxifen, which I started in year two. It’s called “Tamoxifen Fog”.
I see my breast care surgeon and oncologist about every six months to follow up on my progress. Dr. S. occasionally reminds me that I was pretty attached to my left nipple. And we both chuckle. But she’s right, I didn’t want to lose it. I really didn’t want to lose the symmetry. She explained that leaving the nipple is too risky due to the close proximity of the tumor. They watch me like a hawk. So far, I’m doing well with the exception of the recent prostate cancer diagnosis. Even though breast cancer and prostate cancer runs in my family, I was negative for the BRCA1 and BRCA gene mutation. I was later tested for about 25 other genetic mutations with the Myriad MyRisk panel and those all came back negative as well.
So, that is the long and the short of my journey thus far. It’s a long road. I’m very lucky to have a great medical team, thanks to my breast care surgeon, Dr. S. I’m also lucky to have the support of my husband, Tony, who puts up with me and my new found quirks and medical issues.
During treatment, I attended one journaling session at the cancer center. A small and pleasant group. My treatment days changed so I couldn’t attend again until treatment was done. I went back to start attending the group again a year later. I found out that the facilitator of the group had recently passed from cancer and the ladies in the group were spinning their wheels a bit and I offered to take the helm and get them writing again. I’ve been with them ever since, about two and a half years now. They are a wonderful group of women. They are like extended family to me. We haven’t seen any men coming into the group and I hope we can change that. It really is more of a creative writing group than a “Dear Diary” group.
I’m proud to be one of the women and men being recognized by Ford through the Models of Courage program. Ford Warriors in Pink is making a difference in the lives of breast cancer patients by helping them have #MoreGoodDays. Not only had Ford dedicated over $130 million dollars to help in the fight over 22 years, but they also are investing in providing real support services to patients, survivors, and their families.
Another way I’m spreading the message about male breast cancer is through the REAL MEN MAKING STRIDES program with the American Cancer Society in Connecticut. I’ve been selected as co-chair and spokesperson for the program which nominates men in the community to raise funds and spread awareness about male breast cancer.
And, I’m associated with the Male Breast Cancer Coalition which is raising awareness as well. #MenGetBreastCancerToo #MaleBreastCancer
The journey continues. I’m now doing active surveillance for my early stage prostate cancer. Eventually it will lead to radiation or surgery.
In conclusion, I want to thank you, the reader from allowing me to share my story with you. My life is an open book. Sharing the story of my journey helps with the emotional healing process. Please let the men in your life know about male breast cancer and tell them to ask their doctor about screening. Men should examine their chest and feel for any hard lumps. They should also check their testes. They should talk to their doctor about their family history (of any type of cancer and other diseases) and about their risk factors for cancer and other diseases. As I say to everyone, it’s better to know, than not know. If you feel something, say something.”
Bob D.’s Story is shared with permission.