2. Diagnosis – Getting to Stage IV Cancer, Seemingly Overnight.

It doesn’t make sense. It has never made sense. I was at my annual PCP doctor’s appointment in Spring of 2021 and everything seemed fine. There was one minor concern though. My PSA test, which I’ve done every year for decades, was a tiny bit out of range. Normal range is 1-4, mine came back at 5. No cause for concern. My PCP didn’t notice it, so it wasn’t until the appointment was coming to an end and he asked “Are there any other concerns?” I mentioned the PSA being just above the normal range. He agreed to refer me to a Urologist, and then casually replied “Well, if you’re going to get cancer, Prostate cancer is the one to get”. I guess I felt relieved, but found the lack of compassion quite odd.

Normally a diagnosis of Prostate cancer is not the end of the world. I know many friends and family members that have been diagnosed and had either surgery to remove the gland, or radiation to treat it, and most of them are old and still alive even decades later. I wasn’t too worried, after all I’m a healthy, fit, competitive runner and cyclist, vegetarian for 20 plus years, and a Yoga practitioner and meditator. How bad could it be? Probably just a little temporary spike right before the blood test. Maybe I just got finished a workout or something?

The referral was made to Urology. This is where I’m going to offer some advice since I’ve been deep into the medical system for the past 3 + years. The medical system does not have time to care about you. The medical system is worn down, understaffed and broken. They are stretched thin and scrambling to keep it together. When you get a referral do not expect that the referral office will call you back anytime soon. A week is the average. The referral is usually electronic which is good. So get on the phone the next day and advocate for yourself. Stay on hold, be persistent, and get your appointment scheduled ASAP. Once I waited over a week for a referral to Norris Cotton Cancer Center from my PCP. When they finally called back over a week later it was the Rheumatology department, not the cancer center. My PCP office had screwed up the referral. They are shorthanded. Staff is not trained thoroughly and inexperienced. It’s all up to you to advocate for yourself.

I got my referral and appointment with Urology. I requested a certain doctor who I was casually acquainted with. I previously spent years volunteering at the local cancer center so I was familiar with staff there. I led programs for patients and caregivers, giving talks to survivor groups, and sharing my passion for all things Yoga and meditation. Always, in the back of my mind, I thought I would be the last person to get cancer. I’m volunteering at the cancer center for god’s sake. The universe could not possibly be that cruel. Boy, was I wrong.

During my first appointment I was put at ease. The Urologist told me my number was very low. Probably not much to worry about. They would order another fancy blood test to confirm my number. In any event, if it was cancer then surgery or radiation was the first option, granted that the cancer was still contained in the prostate, and judging by the number things looked good. Don’y worry. If by some stretch it had spread a little, then there were hormone blockers that could extend my life for years, maybe. We spent a long time talking in detail about Prostate cancer. As I was leaving he stopped me and asked me point blank if any of this talk was freaking me out. I replied no.

The fancy test confirmed my number at 7, not 5. Still not much to worry about. I’d heard stories of men with numbers as high as 112 and they were still alive. Next was a biopsy. [warning graphic content ahead] I headed into the biopsy confident as ever. I laid on my side and a tube was inserted from behind and pushed up to my prostate gland. A different doctor inserted the numbing agent, via a needle, into the prostate gland. There would be 12 samples taken via a needle that would clip a specimen for the lab to evaluate. Being curious I turned back to look at the doctor and his assistant just before the first sample was clipped. What I saw was a foot-long needle ready to be inserted. Yikes, I almost fainted. Now would be a good time to mention that I’ve never been in a hospital for anything. Never a broken bone. Never stayed overnight Maybe some stitches in the ER. The thought of it gives me the willies. Each time they took a sample there was a loud clicking sound, the snipping of the specimen. He got to about the 10th clip and he was clicking, clicking and clicking. Finally he cursed gently and told the assistant that the needle/clipper tool was not functioning correctly, and ordered her to borrow one from another room.

Leaving the procedure that day I was confident that the biopsy would show only minimal cancer, if any. I would probably be a candidate for radiation, which I wouldn’t mind since I would not be held overnight at all in a hospital. And then I thought about if I had to have surgery to remove this prostate. Being put under. Being overnight in the hospital. Something I had never experienced. I was terrified, but I didn’t let on.

The biopsy came back. It was pretty bad. My score was high which was not good. But again, no need to worry until we have more info. Next a CT scan of the pelvis was ordered along with a full body bone scan. The CT showed the cancer had travelled outside the prostate, into the lymph-nodes (not good) and into my sacrum and right hip bone (also not good). The bone scan was the ultimate bummer. I had widespread lesions throughout my skeletal system. I had zero symptoms. I appeared healthy. It all seemed puzzling to me and to Laurie. And I imagined it puzzled the healthcare team as well.

A brief meeting with the radiation doctor was a mere formality at this point. Once the cancer spreads outside the prostate radiation is out of the question, with the exception of what is referred to as Palliative Radiation. This is at the end of life when you are in so much pain that they can shoot radiation into the spot that is causing you distress and temporarily relieve some of the intense pain. The radiation doctor looked at my bone scan. I chose not to look at it. I had one question for him. I asked if him if he thought I’d still be alive for Thanksgiving, in about six months. He looked at the scan, he looked at me, he looked at Laurie, he looked back at the scan and then said to me “I think so”. Wow, I had six months, give or take.

All this info was now in the hands of my Urologist, my quarterback, and we were back in his office with a bunch of other medical staff. This was serious. Very serious. No cure. Stage 4b. I never asked if the “b” stood for “bone” or “bad” but I’ll go with bad. There were nurses and medical assistants staring at me. They brought in a nurse navigator to help us navigate our way through what lie ahead on my cancer journey. She was staring at Laurie and me, trying to communicate just how serious this was. The doctor barked out orders to the team. They got me some pills to start squashing my testosterone production. I was to come back in a few days for an injection which would block the pathway between my pituitary gland and my testes. Testosterone, it seems, is the food for the prostate cancer growth. Learn something new every day.

I returned to the Urologist about five days later for the injection. When I think about an injection, I think about a shot. Like a flu shot. Like a Covid shot. In the arm. This my friends was much different. The nurse informed me that the shot was going into my abdomen. All I could picture was that foot-long needle again. We were, after all, still at the same Urology office where the biopsy was done. I tried not to freak out. The nurse then stuck a needle in my belly, just under the skin, and injected the juice that would shut down the production of testosterone in this body. It burned and it stung, like an intense bee sting. I breathed through it trying to maintain my composure.

On the way out I made an appointment to return in 90 days (not 89 days because the insurance company would deny it) for more blood tests and to see how this treatment would work or not and to get another shot. Oh, and the injection would have side effects. Most common are hot flashes, night sweats, weight gain, development of fatty tissue. Another way to think of it is being in a perpetual state of menopause for the rest of this life. There are so many more side effects that most of the time I never know if what I’m feeling is the cancer or the treatment for the cancer. I had my first injection and I had the next 90 days to live life to the fullest until my next follow up appointment. I also had to make plans for Thanksgiving as it would probably be my last.