I'd like to start my first blog by telling you something about myself. After all, in future articles, I’ll be using my own experience as a guide to what I surmise about your condition and your needs, so you’ll want to know who I am.
My first brush with cancer occurred in 1992, when I found a small lump on my neck. The first biopsy from a local hospital said that it was a benign nothing, so I went off to my 40th high school reunion with high spirits.
My wife – bless her soul – ordered the hospital to send the slides to Memorial Sloan-Kettering Cancer Center (MSKCC) in New York. When I returned from my reunion, there was a message from the man who’d taken my biopsy, asking me to phone. You can imagine my shock when he said that Memorial was sure the lump was actually a sign of non-Hodgkin’s Lymphoma.
I panicked. I was still in my fifties, looking to live into my 80’s, with no plans for disease or an early demise. A close friend pulled some strings and got me an appointment the next day with a high-level lymphoma specialist at MSKCC. He was (still is) my oncologist over the strange route I would travel. Strange, because I had no knowledge of what this disease was, what course(s) it might take or what it would mean for me, my wife of 35 years and two grown daughters.
Like many a cancer survivor, however, I discovered the crucial difference between chronic and terminal diseases. My lymphoma was a chronic problem – one that probably would recur during the next 20 or 30 years, but probably wouldn’t kill me. Partly this was because I had a low-level, stage one cancer: slow-growing, occurring in only one lymph node. The science of oncology had progressed so far that there were many weapons to fight my disease.
That didn’t mean it was easy, either psychologically or physically. I was perpetually frightened when I went to the hospital for a series of tests (bone marrow biopsy; lymphangiogram; x-rays; and CAT scans) and treatments (27 days of radiation). I still get upset when I have to return to the hospital for scans. First, it was every 3 months; then it was every 6 and then once a year. Certainly, the radiation treatments and later, when the cancer returned, the Retuximab Infusions were no fun. But, and it’s a big but, 14 years later, I’m alive and healthy and living a full life.
I tell you all this for two reasons: (1) to show that the difference between a chronic and terminal disease is important and (2) to explain how I was able to approach my prostate cancer with a different attitude when it was diagnosed.
I had never been to a urologist, but when I got pain in my testicles, I figured I’d better do something about it. Maybe this was testicular cancer, or maybe my lymphoma coming back. The physician was highly recommended, but a stuffy type, and he dismissed the pain as “simply” epididymtis, (inflammation of the epididymis, a long, coiled tube that stores and matures the semen from the testes). It might have been “simply” to him, but to me, it was a lot of pain. He suggested warm baths and aspirin; my internist upped it to ibuprofen, and the pain went on and on and on. Finally, I got to the pain clinic at Beth Israel Hospital in NYC, and a wonderful doctor gave me a tablet of percocet. Within fifteen minutes – after months of pain – the agony stopped. It hasn’t returned! I’ll discuss this lesson in “pain control” in a later column.
Still, I wasn’t happy that I’d had some pain and didn’t know why it happened. It wasn’t an infection, said my urologist. He thought it might be an obstruction. So after a digital rectal examination (DRE), he “thought” he detected a small bump in my prostate gland.
This time, I didn’t panic. After all, I was a cancer survivor and knew what tests and “suspicions of cancer” were about.
The urologist said I needed a biopsy. He took one. He phoned. I had a Gleason rating of six. Would I like to come see him?
Would I like to? No. Would I? Of course. My wife and I went. He said there were several options: surgery, radiation, and seed implantation. No hurry. “It’s very slow growing, prostate cancer,” he said. Maybe he even said we could “wait and watch,” but I don’t remember that. What I do remember is that I decided to phone my MSKCC oncologist for his opinion. A “second opinion” is my first recommendation when anyone – ANYONE – says you have cancer and need treatment!
He said, “The good news is that there are four treatments, and they all work.” Later, I would come to doubt that “work” is the best word. After all, what does “work” mean? We’ll get to that in another column. I asked him to set up an appointment with the “top man” in prostate cancer at MSKCC, who I went to see a few days later.
This physician worried me enough to make me think I should get treatment. I opted for 40 days of radiation therapy. The cancer (and my prostate) shrank to zero. I was in remission from my second cancer.
A year later was when my lymphoma came back, was treated, and died down again. But in the mix, we discovered a benign tumor in my colon; it was the kind that can become malignant if not removed. So I had a colon re-section: five days in the hospital on morphine, etc.
Where does all of this leave me? For one thing, I know what it’s like to be diagnosed, treated and re-treated. For another, I’ve done a lot of thinking about cancer. For a third, when a publisher asked me to write about prostate cancer, I leapt at the opportunity.
Which brings me to the present circumstances as a “patient-expert” who may be able to shed some light on various aspects of the disease and its diagnosis, treatment and psychological aftermath.
I’m not a physician, and nothing I say is to be taken as anything more than the opinion of a man who has gone through some of the same things you’re going through and who has researched the Internet and other resources to learn as much as I can about this disease. It’s from this point of view that I’ll be writing in the months to come.
Published On: June 13, 2006