March is Colorectal Cancer Awareness Month. Earlier this year, I shared my interviews with Dr. Sung Poblete and Dr. Anton Bilchik who are working on the SU2C Colorectal Cancer Health Equity Dream Team. Today, I’m sharing a piece written by colorectal cancer survivor and my friend, Joe Bullock.
The year was 1993 and I’m ten days away from marrying the woman of my dreams. I was 25 years old at the time and I was excited to start my new life with this incredible woman. I was in between jobs and I was cleaning a house for a church friend of mine to earn extra money. He also happened to be a primary care physician at a local medical clinic in my town.
As I was packing up for the day, he asked how I was feeling and how the wedding plans were going at the time.
I told him I was pretty stressed and had a bit of lower back pain. I had been in the process of getting the apartment set up that my new bride and I were moving into after the wedding. I think the back pain at the time was from sleeping on the floor of the apartment because our furniture had not arrived yet. He seemed concerned and asked me when was the last time I had an actual physical from a doctor. I told him honestly not in years. I just assumed because I was a fairly healthy guy at the time and there just wasn’t a need for it. He basically told me to humor him and come by his office the next day and get a physical. I agreed with him and I headed to his office the next morning.
When I arrived at his office the next day, he ordered a series of blood tests to check my overall health. When we got to the actual physical that day he did the old hernia check with the turn and cough. While he was checking out the old ‘nut sack’ he then paused and said, “I noticed you only have one testitcle” and had asked if that ever had been a concern for me. I told him it wasn’t because the last time I had a physical, the doctor said it should not be a concern for me because some young men are just born that way.
The fact that I was a uniballer had actually been a source of embarrassment for much of my young adult life.
I did have some conerns about sexual proformance going into marriage and if It would affect me from having children . He assured me that one testicle would work just fine but….. You never want to hear the word ‘but’ from a Doctor. He said there was a chance the undescended testicle could be cancerous. This would not be the only time I would hear the word cancer in my life.
What I thought would be a simple physical had brought on a full panic attack that day. I’m a week from my wedding and I’m finding out that I might have testicular cancer! What should I do next? Do I cancel the wedding? How do I tell my soon to be wife that she might be marrying a cancer patient. He got me down and told me not to worry. He gave me a pamphlet on testicular cancer and told me to be back in his office the day after I get back from my honeymoon. Just remember this is the year 1993 – no Google or iPhones. Finding information and additional support was difficult at the time.
I decided not to tell my fiance about my concerns about the possible cancer diagnosis.
It would be the first argument of our new marriage. She did not like the fact that I kept this information from her at the time. I just didn’t want to ruin the special day for us and worry everyone about something that just might not be there at all. I just decided to shoulder the burden, which a lot of men tend to do when facing a possible cancer diagnosis.
A couple of days before the wedding, I remember sharing with one of my best friends at the time about the doctor’s visit and the exam. The stress of the exam was getting to me and I felt I needed to share with someone how I was feeling. I needed an advocate and I turned to a friend for support at the time.
My friend’s reaction was that guys don’t like talking about losing a ‘nut’ and that stuff is just private. You should just keep it to yourself till you find out if you really have cancer. That probably wasn’t the best advice or the most supportive at the time but I decided to go with it and move on.
After the wedding I told my wife what was going on with the exam I had before our wedding.
I had no doubt she would support me no matter what we were facing together. When we got back from our honeymoon I had an MRI and a surgery to remove the undescended testicle and then waited almost three weeks for the pathology report. Luckily for me, no cancer was found and I just lost something I never had in the first place.
At the time my wife and I decided to put all of this behind us and enjoy our new married life together. Although I never forgot how lost I felt being faced with a possible cancer diagnosis and what it felt like not having someone to advocate for me at the time.
As my wife and I built our life together, the first 15 years seemed to go by fast. We had built our family home across the street from my parents. Yes, I was living the ‘Everybody Loves Raymond’ life and I miss it dearly today.
At this point we had two children and I had once again slacked off on my regular physicals.
I think this is common among men of a younger age. My wife had been urging me to go to the doctor for my regular routine physical exams because of what had happened after we got married with my first cancer scare.
Because of our recent move I needed to find a new primary care doctor in our local community. I made an appointment at a local medical clinic. What I didn’t realize is that this would be the same doctor my parents were seeing at the time. He noticed that I did include most of the family health issues my parents had been struggling with in my medical history but I had left out a bit of information.
Remember I said it’s never good when a doctor says the ‘but’ word and it has seemed to become a recurring theme with the cancer that I would eventually be diagnosed. He noticed that I had left out prostate cancer in the notes in my medical history. He went on to tell me that for a few years my Dad started to show signs of early onset prostate cancer. He had been encouraging him to seek treatments for years. He said my Dad’s prostate was enlarged and his PSA blood tests were always abnormally high. The PSA (Prostate-Specific Antigen) is a blood test to detect prostate cancer in men.
I was only 41 at the time and he said I was fairly too young to get prostate cancer but he had seen early onset in men much younger than 60 as in my Dad’s case.
He suggested that I consider getting a PSA and a DRE (digital rectal examination) that day just to check and get a baseline of my prostate. Men are encouraged to get their PSA checked annually after age 45 and earlier if they have a history among the men in their family.
Unfortunately my Dad made the decision not to treat his prostate cancer and it would eventually lead to his death in 2017 at age 82. This would be the year before I was diagnosed with cancer myself. Before my Dad’s death I spent the last two weeks with him in hospice care as his caregiver. He told me he regretted not listening to his doctors and getting proper healthcare. At that point it was too late to get any treatment.
I had tried for years to advocate for him to seek treatment for his cancer. As I look back I realized how advocacy no matter how hard you push can fall on deaf ears especially among men.
I also would learn what a hypocrite I would become facing my own cancer diagnosis.
There was even a moment I didn’t want to treat my own cancer. My wife would have nothing to do with it and advocated for me to seek treatment. I am glad I listened to her and I am alive today because of her. Today, I advocate and educate men to get proper cancer screenings in the memory of my Dad.
While I was caring for my Dad during the weeks before he died I started showing some signs of colorectal cancer. I had some blood in my stool, unusual bowel movements or lack of them and unexplained fatigue. When I consulted ‘Dr. Google,’ it said hemorrhoids and stress was the culprit but could be colorectal cancer in ‘older adults’.
I chalked it up to stress caused by being a caregiver at the time for both my parents. I was only 49 and felt I was too young to get colorectal cancer.
I would soon learn I was wrong and in fact it is known that colorectal cancer will be the number one ‘cancer killer’ among younger adults ages 20 to 49 by the year 2030. At the urging of my wife (yes I’m just that bone headed) I went to see my doctor to inform him of my symptoms. He told me to schedule a colonoscopy to see what was causing the symptoms.
Unfortunately, I would have to reschedule that colonoscopy because my Mom died of a massive heart attack a couple of days before my colonoscopy. I decided to postpone the procedure until a better time and live with the symptoms for now. The symptoms seem to fade but after a couple of months they did return and I rescheduled the colonoscopy.
I understand the fear of getting a colonoscopy, but if you can detect colon cancer early or remove any visible precancerous polyps it can save you years of treatment and pain. A couple of days of being uncomfortable and dealing with the recovery from it is worth the alternative.
When I was diagnosed with stage 3b colorectal cancer in May of 2018 at age 50 it was caught after routine screening for my age.
Today the age of a routine colorectal cancer screening is age 45. To treat my cancer I had to endure a 7 seven hour surgery to remove a 7 cm tumor in my colon, I lost a foot of my colon and had 40 lymph nodes removed, of which three tested positive for cancer. Because the cancer was in my lymph nodes it had access to my bloodstream and It could easily spread to other parts of my body without proper treatments.
The next step was six months of two types of chemotherapy to go after and hopefully kill the cancer cells that might have gotten into my bloodstream. If I had gotten screened at a much younger age my cancer might have been caught earlier and my treatments might have been lessened.
It’s because of years of advocacy that got the screening age for colorectal cancer lowered.
It is no longer known as ‘the older man’s disease.’ The rate of diagnosis lands at about 50/50 among men and women and 100 children under the age of 18 are known to be diagnosed each year. It is one of the reasons I advocate in the cancer space today but there are many more. We have so much more research to do in this cancer space because some of the current treatments are dated back to the 1950’s . We need more research in the ways to detect cancer early and more advanced treatments. We need to open the door to more clinical trials to help patients get advanced treatments to be able to survive cancer.
It is a fact that Colorectal cancer can be living in your body for 7 to 10 years before you are even diagnosed with cancer. That being said, if I could have gotten a routine colonoscopy at age 40 I may have never gotten cancer or at least I would have just had some precancerous polyps removed. For the cost of a coloscopy I could have avoided years of expensive treatments to treat my cancer.
This is why I advocate for everyone to get screened and to educate themselves about how cancer can impact a person’s body.
Doing monthly selfcheck exams for cancer and regular physical exams from your primary doctor is a great way to prevent you from being diagnosed or detecting cancer early. This is a mission I never expected to take on but I am passionate about because where my life has taken me. I don’t want another man at the end of his life to tell me that he regrets his health decisions as my father did that day. If I can use my voice for change because of my own battle with cancer then I have brought purpose to my survivorship.
These are the reasons I advocate today in the cancer space. There are so many ways you can advocate in the cancer community. Here are a few of the ways that I advocate today, some are as simple as writing a letter to a cancer patient to give them encouragement and another is asking my state representative for more funding for cancer research.
My advocacy journey has ramped up in the past few years.
In January 2020 I became the Lead Administrator for an emotional support group for men called ‘Man Up To Cancer/ The Howling Place.’It’s a part of manuptocancer.com that has been created by Trevor Maxwell, a Stage IV Colorectal Cancer patient and friend. (Editor’s Note: Check out Trevor’s piece he wrote for ABSOT here.)
A month later, in February 2020, I became a ‘Card Angel’ for Chemo Angels. In April 2020, I became a contributor to manuptocancer.com as a blogger for ‘Joe’s Wolfpack Trailblazers.’It’s a blog about the works of service and the daily lives of the men of The Howling Place.
I’ve also served as a cancer mentor for Imerman Angels,an Ambassador for Fight CRC 2021, an Empowered Patient Leader for Colontown.org.
In December 2020, I created ‘Colontown Junior’ with the help of Colontown.org to emotionally support the families of children and teenagers diagnosed with pediatric colorectal cancer. To further my support for families, I created The Carolina Cancer Beacon Facebook page as an additional way to share resources and information to the cancer community. In May 2021, I created ‘The Wolves Den’ on Facebook, as an emotional support group for men caring for a loved one battling cancer.
This post originally appeared on A Ballsy Sense of Tumor. It is republished with permission.