Marlyn’s Miles
How Male Breast Cancer has changed MY life
BLOG by PAT WASHBURN
BCH Editorial Board
Volume 1: DECEMBER 2016, OMAHA, NEBRASKA, USA
INTRODUCTION
At times, life seems pretty mundane and tranquil. Other times it seems hectic and you wonder if you will ever find enough hours in the day to get everything done. Then there are times that take your breath away because of the unknown and unexpected challenges that lie ahead of you. That happened to me in December of 2016.
Hi. My name is Pat.
My husband, Marlyn, and I had celebrated our 22nd wedding anniversary in September of 2016. He was an avid golfer and had been on the golf course every weekday morning that summer since early May. Since mid-summer, he had been complaining of his right arm and shoulder hurting. We assumed he had strained a muscle while golfing. He started taking over-the-counter pain meds and even started going to a chiropractor to help alleviate the pain. However, it just seemed to worsen as the weeks went by. By September he had stopped sleeping in our waterbed because it was too difficult for him to get out. He had resorted to sleeping in a recliner in our living room. His arm and shoulder were hurting so bad he kept a pillow on the arm of the recliner to try to ease the pain.
Being a diabetic, Marlyn needed to get his blood sugars checked routinely. He had not been completely satisfied with the services of his current doctor, so I suggested he visit my Primary Care Physician (PCP). My PCP was an older gentleman that always had time to visit with his patients about their concerns. As this was one of the major complaints with his current doctor, Marlyn decided to give my PCP a try.
On a Monday morning, Marlyn had a routine exam with my PCP. This was his first time to meet and visit with the man. Several vials of blood had been taken for the diabetic panel, and the discussion was held regarding the intense pain in Marlyn’s right shoulder and arm.
The next morning, our telephone rang. It was the doctor telling us one of Marlyn’s blood tests came back as elevated, his Alkaline Phosphatase. Not knowing what this meant, I asked Doc to explain it. He said it was a liver enzyme. Generally it is not too worrisome; however he did want to have an ultrasound done since Marlyn also complained of the pain in his arm and shoulder. Doc explained that the pain, coupled with the elevated Alkaline Phosphatase, could indicate a problem with either the liver or the gall bladder. He ordered an ultrasound for the very next day.
As Marlyn was in so much pain, I accompanied him for his ultrasound. I was in the room with him and held his arm in the air while the ultrasound tech scanned his liver and gall bladder area. I could see that she was measuring something on the screen, but did not understand what I was looking at. At one point, she asked if he had ever had a problem with his liver or his kidneys. He had not. She continued the ultrasound without further conversation.
We were to learn later that what the ultrasound tech was measuring were lesions on his liver. She had found six of them, all were several centimeters long.
Our next telephone call from the doctor was to tell us Marlyn needed to have an MRI done. This MRI did show a mass on Marlyn’s left breast, just under the nipple. The oncologist we had been referred to stated the mass was 2.5 cm in size. She then ordered a PET/CT scan, a bone survey, a mammogram, biopsies of both the breast and the liver, chest x-rays, and a brain MRI.
DIAGNOSIS: STAGE IV
By this point all the telephone calls, doctor visits and scans started to run together. It was too much for us to understand all at once. Thankfully we understood the complexity of our situation enough to have some of our children accompany us each time we met with the oncologist. She had ordered a port inserted into his chest to make blood draws and “other procedures” more easily administered. At the time, we were unsure exactly what this all meant for us.
The oncologist gave us a pretty bleak picture of Marlyn’s future the first time she sat down with us to explain his situation. The first thing she said to us was that Marlyn had Stage IV breast cancer. It had metastasized (spread) to other organs and parts of his body, so there was “no cure”. But she hoped to give him five years of quality life. All the scans, MRI’s, ultrasounds, etc. had shown her just how extensively his cancer had spread. The biopsies of his breast and liver both revealed the origin of the cancer was in the breast. From there it had metastasized into his liver, his lymph nodes, his lungs, his bones (thus the pain in his arm and shoulder), and his brain. The brain MRI revealed eight tumors. A large tumor was in the frontal lobe near his orbital bone and caused concern about him losing his sight. This is also the part of the brain that controls our memory and judgement. I had noticed a “shortness” in his attitude with me the past few months, but seriously thought it was a normal part of our new retirement life. He and I had retired just two years earlier, so we were getting used to living in the same house again. You see, we lived five hours apart for nine years. He was finishing his career in education in the state of Nebraska and I stayed behind in Iowa with my job. During those nine years we saw each other on weekends and during the summer. After retirement we suddenly seemed to be under each other’s feet constantly. I really did think his irritability was just normal. It turns out that it was likely because of the tumors in his brain.
A second large tumor was near his brain stem. Although the brain stem is relatively small, it controls many of our vital bodily functions such as breathing, swallowing and digestion. Because of the importance of the brain stem, the doctors were hesitant to treat that area with radiation without a follow-up “mapping” of the tumor. A second MRI was required before they would proceed with further radiation. Marlyn was very claustrophobic and refused to have this second brain MRI done.
TUMOR MARKERS
Marlyn decided early on that he was going to beat this disease. His oldest daughter, Barbara, had been diagnosed with breast cancer just two years earlier, and had survived after chemotherapy and radiation. He felt he would conquer his breast cancer in the same way. Genetic testing was done on both Marlyn and Barbara. Her tests came back with an “Unknown Origin”. His tests came back “Negative”. According to the genetic testing that was available at the time, neither of them showed any signs of carrying the BRCA gene mutation that increases a person’s risk for getting breast cancer.
Marlyn’s tumor markers showed his cancer was Estrogen positive, Progesterone negative and HER2 positive. Barbara’s tumor markers showed her cancer was also Estrogen positive, however her markers were Progesterone positive and HER2 negative. Neither of them had a mastectomy. Barbara opted for a lumpectomy as her cancer was caught very early thanks to a mammogram. Marlyn was not given the option of a mastectomy because his cancer was so extensive throughout his body.
CHOOSING TREATMENT
After discussing options with Marlyn’s medical oncologist and his radiation oncologist, it was decided to use directed radiation onto his right scapula due to the pain he was still experiencing in his arm and shoulder. After just five treatments, the pain was much less severe. We were very thankful that by the tenth day of radiation, the pain was completely gone in his arm. Part way through these radiation treatments, the radiation oncologist also started targeted treatments on his brain. They had identified eight tumors in his brain during the original brain MRI. Seven were targeted during treatments; however the large one on the brain stem was not.
A chemotherapy cocktail of Perjeta, Herceptin and Taxotere was decided to be the best route in treating Marlyn’s breast cancer. He was to get this chemotherapy treatment every three weeks. Unfortunately, he suffered from severe dehydration and nausea due to this cocktail. We felt that we were fighting a losing battle, but did not want to give up.
Marlyn only lived five months after his diagnosis. Those five months were filled with four separate hospital stays. One of the stays was thirty-four days in length. By this time, he was on massive amounts of oxygen and was not able to go anywhere without a considerable amount of preparation and planning.
RELIANCE / FEAR
I was thankful his pain was basically gone. However, his quality of life was not “good”. He relied on me for all of his personal care as well as his daily needs. As a man who had been an administrator in education, it was very difficult for him to have to rely on someone else.
He had developed an unrealistic fear of water. Bathing was almost non-existent. Having the water anywhere on his body caused him to shudder and gasp for air even though he wore his oxygen cannula into the shower. He also developed a strong anxiety to being in a room if he could not see me. I was not able to go into another room or down to the basement without him crying out for me. It was a fear I had never witnessed in him before this diagnosis. It is something I hope to never witness again.
THE END / MY NEW FUTURE
Marlyn died peacefully May 26, 2017, just five months after he was diagnosed. All of his family was with him and had a chance to say their final “goodbyes”.
During his illness, we became very familiar with comments from family and friends stating they had never heard of a man getting breast cancer. Several even asked, “But where did it really start?” The biopsies had clearly shown his cancer had started in the breast.
We had discussed the fact that most people are not aware that men can get breast cancer, and briefly wondered out loud what we could do to educate others. The state of Nebraska, where we live, offers a Breast Cancer Awareness license plate. It can be personalized for an annual fee. Marlyn had decided he wanted the license plate on his car to read “MEN TOO”. Unfortunately, we were only allowed five digits on the plate. His car now proudly touts the license plate, “MEN 2”. I am thankful Marlyn was able to see and hold the new license plate when it arrived in the mail. I cherish that memory.
UP NEXT (November Newsletter): MY DECISION TO EDUCATE OTHERS
Pat Washburn
https://www.breastcancerhub.org/editorial-board-blog/patricia-washburn
