The End Of My Life Page 2
Modern medical urology has a backward approach to men in their 70s who have prostate cancer. That their approach is purblind is gross understatement. Some institutions are reluctant do a PSA on patients over 70 years of age. The Veterans Administration hospitals are a case in point but they are not alone. Once a man reaches a certain age most doctors look with one clinical eye and the other eye focused on statistics and economics. After age 70, statistics show that men die of a complex array of diseases, one of which may be prostate cancer. Statistics are fine if you are a statistician or a third-party health care provider paying the bill. When you are the one with prostate cancer, it’s personal and statistics don’t matter; you want something done for you. When it’s your life on the line you don’t want to hear the doctor say “Charlie, you’re 78 and you have prostate cancer. You will either die with it or of it.”
I have had conversations with many physicians on this topic and they are of one mind, i.e., if the diagnosis can't be made early in the disease, it probably will become metastatic; when it does, it can be treated. As it stands today, there’s not much more to be done.
Conversation with the doctor at the second or third biopsy is something like this:
You: My PSA is rising, biopsies are negative and you haven’t found any medical problem in my
prostate.
Doctor: Yes, so far that’s correct.
You: Why not think of cancer?
Doctor: It’s probably cancer but we can’t do anything until we can prove it.
And so it goes for thousands of men in the USA.
In the past 10 years there have been at least a dozen experimental drugs for patients with advanced prostate cancer. Some of them show great promise but, as of this writing, they are still in clinical trials and not available to the public. It is one of the great tenants of our health care system that no pharmaceutical or implantable device may be offered to the public unless it is proven to be safe and effective. Sounds good, but it can take up to five years and several millions of dollars. What is strangely paradoxical is the snapshot of medical economics during the three to five years of serial elevations of the PSA concomitant with negative biopsies compared to the snapshot of medical economics after a diagnosis is made.
During the time they are picking away at you for a diagnosis (and in your heart you know you have cancer) the cost is confined to doctor visits, blood tests, x-rays and whatever number of biopsies before a positive tissue diagnosis is made. The bills are substantial but not exorbitant.
Contrast it to the cost of taking care of the same patient after the diagnosis has been made. Start with Lupron injections to suppress testosterone,($4,500 per shot) and Casodex tablets, one daily ($1,100/90 pills), a full body radionuclide bone scan, a CAT and an MRI. (you may have several of each) After three to five years of watching the PSA climb, the odds are that the tumor is metastatic. First, you will be subjected to high beam radiation to ablate the cancerous prostate gland. You wanted them to take your prostate gland out years ago but they wouldn’t do it and now you spend three to five weeks under high beam radiation for 30 to 45 minutes each day. Most of the time the radiation kills the cancer in the prostate; all of the time you suffer from post-radiation effects. You will be given medication to quiet your symptoms. After the radiation, it is common for your PSA to drop to zero, or to very low values. You’re delighted but you can’t get it out of your mind that all of this could have been avoided if the urologist removed your prostate years ago. The usual follow-up is three months after the radiation. Most cases show good results and patients are happy. Some patients never have another problem. There are other patients, many of them, in whom cancer continues to grow and spread through the blood stream.
The good feelings are short-lived if the PSA starts to climb again. If so, at the six-month follow-up, it’s common to see metastatic lesions in the pelvis, rib cage or vertebra. You start another series of bone scans, CAT scans and frequently an MRI followed by another series of x-ray treatments to the affected area. You may even be a candidate for CyberKnife therapy, ($75,000 for five days of high-intensity radiation that pinpoints the area of tumor.) Why am I telling you this? In a two-year period of time following the diagnosis, the average cost of treatment is $300,000. It continues to mount until you die. There’s no way to put a dollar value on the physical and emotional strain on the patient, but it is substantial. I think it's insane medical economics. I think it's a sad way to practice.
What is needed is a definitive test for prostate cancer, something that will unequivocally make a diagnosis without relying on tissue. The problem yet to be solved in urology is the enormous database of men whose PSA continues to rise in the face of multiple biopsies negative for cancer. They are still fumbling in the dark, hoping the biopsy needle will find the tumor that both you and your doctor know is there. I have been told that research is ongoing. Very comforting.
The sand is filling up in the bottom half of the hourglass of my life; the grains above are few and seem to be falling faster. The attitude that I have adopted and recommend to all my fellow cancer patients is this:
ØAs you fight what you know to be a losing battle you begin to think about all the “what ifs”.
Don’t do it; it’s a prescription for disaster.
ØIt is what it is and you can’t change it.
ØDon't sit in a corner with a blanket over your head crying the blues, it's a waste of precious time.
ØLive every day as if you don’t have cancer.
ØDo what you are physically able, eat what appeals to you, have a cocktail every night at five, take a sleeping pill if you need one and thank all the gods there be that you had another day.
ØClose your eyes, sleep, and look forward to seeing the first rays of light in the morning.
Irony:
In the interlude between bouts of radiation therapy, my oncologist ordered a follow-up CAT scan. A small feathery lesion was noted in the upper lobe of my left lung. A biopsy showed primary adenocarcinoma. Two primary cancers! How lucky can a guy get? I spent 10 days at the University of Washington in Seattle having video assisted thoracic surgery to remove my upper left lobe. It’s now six months post-op and follow-up x-rays show no sign of tumor. But ‘what if’ I had my prostate out 10 years ago when I was begging them to do it? The lung cancer probably would not have been identified until too late.
Life is a dicey game at best.
Every day you toss the dice, try to make your point and stay at the table.
One day you roll a seven and the game is over.
Life is a dicey game, but it’s the best game there is.
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