Don't force ownership of the damned cancer on me!

In December 1995, I was working out as I watched the evening news. General "Stormin' Norman" Schwarzkopf came on TV with a Public Service Announcement advising men over 40 to have their PSA checked.

I was scheduled for my annual physical the next day. I asked the doctor for a PSA test. He refused. I explained about seeing the TV ad and the doctor said we would start PSAs at age 50. I wanted it now. He listed ten symptoms and asked if I had any of them. No, I didn't have any symptoms. He said the test was a waste of time and money. I demanded a PSA test. We actually got into a shouting match, but he finally ordered a blood draw.

PSA test results and biopsy

A week later he called to say the lab had messed up my blood sample and I needed to have another one taken. I went in for a second blood draw. The PSA on the first sample was over 18. By the time the second sample was analyzed, it was over 19. I changed doctors. A biopsy confirmed prostate cancer. My new doctor, I'll call him Tom, recommended a radical prostatectomy. But he cautioned me the side effect would be permanent impotence. My immediate reply was, "I would rather be alive and limp than dead and stiff." He laughed.

Deciding on treatment

Then I started asking Tom questions and after just a few, he commented that I asked the most intelligent questions of any patient he had ever had. I told him I was reading the current research papers being published in medical journals and in university research files, the result of internet searches using the crude search engines of the mid-1990s.

Tom put me on Lupron for a couple of months to shrink cancer, then he performed a radical prostatectomy and removed my entire prostate. Unfortunately, cancer had escaped and was already in the seminal vesicles. Tom advised me that it would eventually metastasize in my bones.

Advanced stage prostate cancer

I asked the inevitable question about how long I had left to live. He grimaced and said there had been a few cases of men in my situation living up to 20 years. I asked how long I would have lived if I hadn't demanded the PSA test and had just let cancer run its course and he told me maybe three years. I would have been dead before I was 50 - the age at which my earlier doctor wanted to give me my first PSA test!

In addition to drugs, radiation, and surgery, I have used mental imagery to fight cancer. In the early years, when I crawled into bed and turned out the lights, I envisioned cancer as ants in an ant bed that extended deep into my body. I would hunt the ants (individual cancer cells) and kill them, one at a time. Each one I killed in my imagination gave me a bit of satisfaction. Each night there were a few fewer ants. After a couple of years, I was searching through never-ending empty tunnels in that ant bed and not finding any ants left to kill.

I still descend into that ant bed some nights and while I know some ants are hiding in the far, dark recesses of those endless tunnels, I am not finding them like I was in the early years. Nonetheless, I'm still squashing the little bastards every time I find one.

Not wanting to own cancer

My first oncologist, Tom, forecast a maximum of 20 years life left for me following surgery. Seven years ago, I sent him a 20th Anniversary card. I no longer see Tom because I moved to a different state over a decade ago. I am on my 9th oncologist now because I am more aggressive at fighting damned cancer than most doctors want me to be. I will change oncologists as soon as I get the feeling they are not as committed to fighting this damned cancer as I am.

Note that I keep saying "damned cancer." I absolutely refuse to let anybody put a personal pronoun in front of the word "cancer." You can call it cancer, the damned cancer, or the eff-ing cancer. But NEVER try to give me ownership of this disease. I didn't ask for it, I don't want it, and I reject it with every fiber of my being.

Cancer in a pet

A number of years ago, my wife got some smuggled laetrile for a young pet that was dying of cancer metastasis. The pet had undergone surgery for cancer of the renal glands, but it had spread and now she was on her deathbed. The laetrile revived the pet and she lived years longer, finally dying of kidney failure at a geriatric old age. When the pet died, the vet who had earlier diagnosed cancer and removed the renal glands did a necropsy and was baffled that cancer had not progressed.

In the meantime, as soon as I saw that it had revived my pet, I went to Mexico and checked into a laetrile clinic. I have used every treatment they offered, along with the treatments my American doctors have recommended. However, since laetrile is "quack" medicine, I have learned that the quickest way to invite derision and insults from an American doctor is to let him know I'm using something the AMA says doesn't work. Maybe American doctors don't like it, but hey, I'm alive and I've outlived the most liberal expectations any of my American doctors have had for me.

Not my cancer

Don't get me wrong. I have continued to see American urologists and oncologists, too, but only if they are as aggressive as me. And when one oncologist, on my first visit, used the personal pronoun "your" in front of the word "cancer," I told him what I said a couple of paragraphs above. He responded, "Yes, well, let's get beyond that," and continued to used that pronoun. I never went back to him for a second visit.

It is my wife, my son, my daughter, my dog, my house, my car, my job. But I absolutely refuse to take ownership of the damned cancer! Once you accept ownership of something, it is that much harder to get rid of it. The cancer is NOT "mine."

I only attended a couple of support group meetings in a couple of locations very early in my fight. I sat in disbelief every time as grown men sat around and whined about not being able to get an erection and perform sexually. Was that how they defined themselves? I never defined myself by an erect penis. There was a lot more to me than that before the orchiectomy, and there is still a lot left in me without an erect penis!

Prostate cancer and side effects

I rejected intermittent hormone ablation after the orchiectomy and insisted on uninterrupted "chemical castration." After a few years, I had the boys snipped and thrown out in a biological waste bag. Don't think that will stop your sex life. There are plenty of ways to please a partner and be pleased by a partner that do not involve an erect penis or an ejaculation of sperm-laden semen. I'm just as active now at age 75 as I was during the first year of marriage at age 22. Not in the same way, of course, but every bit as active and every bit as happy. And my lady assures me she is every bit as satisfied, too.

I have tried most of the various treatments recommended by different oncologists I have seen. The one with side effects that devastated me the worst was Xtandi. After a year, I was incapacitated by fatigue and migraines. I quit that drug and changed oncologists when he couldn't offer me anything else.

I started a few months ago at another cancer clinic and my new oncologist, a doctor with decades of experience doing nothing but
fighting prostate cancer, remarked on my first visit am his longest surviving patient. He has started me on Provenge treatment (immunotherapy). I still have a lot of good years left in me in spite of the metastasis that has sprouted up on my pelvic bone.

I figure if I stay aggressive with my battle against this damned cancer, I have another four to six years left to play with my grandkids. By then, I will be over 80 years old. I probably would have been dead before age 50 if I had listened to my first doctor.

Morals of the story

Here are the morals to my story:

1. Do maximum research, but not just by reading brochures put out by big pharma and clinics. And the information you get in ads on the internet is mostly worthless after you are a little ways into the fight. Stay abreast of the current research. The best place I have found for a lay person to stay informed is through prostate cancer newsletters from sciencedaily.com. In my experience, most internet searches on google just give you the same basic information and only try to sell you stuff. It's not like the old days before advertising dominated the entire internet. Google is virtually worthless to do research.

2. The doctor is your advisor, not a dictator. You have to study everything you can find and know more about the specifics that apply to you than the doctor does. Then you discuss the damned disease with him. Research his advice and if you deem it the best treatment protocol, follow it. But never stop looking for new research and new treatments.

3. At any time you feel the doctor does not have your very best interests at heart and is not in the fight against the damned cancer as hard as you are, change doctors. Insist on a doctor who rejects it just as aggressively as you do.

4. What you have to give up, give up eagerly as the price to stay alive. You can live without a prostate. You can live without testicles. You can live without an erection. The key word is "LIVE!"

5. Never, ever, take ownership of the disease. Reject it mentally. Reject it emotionally. Reject it physically.