While undergoing radiation for prostate cancer in 1997, I thought that it would be a good idea to put down on paper my experiences for the benefit that it might possibly be to others hit with this crisis. Three articles were envisioned (on Diagnosis, Treatment, and Follow-up), written, and subsequently published in 1997 and 1998 in the Monitor, the monthly publication of the Capital PC User Group, an all-volunteer not-for-profit group of personal computer enthusiasts ("users helping users") in the Washington, D. C. area.

The thought was that the Follow-up article would cover everything after the treatment. In its way, as I foresaw at the time, it did that. Since the treatment and the third article in October, 1998, on-going developments require a continuation of the narrative as matters unfold. So the new Plan is to write other "chapters" when unfolding events can be lumped (I hate that word but it fits here) into some kind of category. For now I will think of the current category as walking a tightrope between living and not.

I began double hormone therapy early on, and through this writing have been taking those two hormones, Lupron and Casodex, for 35 months (see Intermittent Planning, below). The most notable effects of this treatment, which preceded and continued right past the 3D external high beam radiation treatment, is that my prostate reduced considerably in size, to around 20-25 cm., I have gone on a mostly vegetarian and fish diet, gained weight despite, have hot flashes throughout the day and night accompanied by urinary urges at least every two hours, and after a year or so, feel increasingly drained of energy.

Despite all of that, the overriding and overwhelming concern is staying alive in the absence of definitive reassuring medical support. Just as it was so traumatic to deal with the many choices of primary treatment, it now becomes difficult to chart an upcoming path on follow-through..

And it seems I have a chance, always. That’s why I will consider myself cured if I live out my normal life expectancy as of the time I was diagnosed with prostate cancer, which would take me up to July, 2008.

When I finished my radiation treatment at the end of February in 1997 the big question was, did the radiation kill the cancer? The doctors I have consulted cannot tell me, nor do they set up tests that would enlighten me. Is that because there are no tests or because I need doctors who are more current in the technology? There is no question this latter possibility is one that I must pursue, as I encounter more and more responses, which I refer to as no responses at all, to questions I pose.

Information that I am learning suggests that my hormonal treatment will only subdue latent cancer that I have for at most, on average, about three years. I am approaching that. My prostatic serum antigen (PSA) has held at undetectable for well over a year but that guarantees little for the future. It does however give me much to pin my hopes on. If the cancer becomes hormone resistant I will have to try something else. Hormone resistance is recognized by a rise of PSA, significant according to the knowledge of the doctors handling the situation.

At the conclusion of my radiation treatments my radiation oncologist wanted to monitor my situation every six months, but after a year or so decided to get out of the clinical business and go into administration and research at the National Cancer Institute. My new radiation oncologist, had worked on my case also when I had radiation. When I had my first consultation 20 months after the completion of radiation, I referred to him as "playing a silent part" in my earlier treatment, as we had never spoken. When I asked him why I should even be visiting him any more, he said that he would like to follow up my situation for five years. Two and a half-years after completion of my radiation he began a 300-person survey about quality of life since radiation, addressing particularly energy level, side-effects, and urinary habits.

He suggested that if the hormones continue to suppress the cancer until I will have been taking them for three years, I should stop taking them: go on what is called intermittent therapy. Then I would find out if the cancer were gone, although regardless, in many cases the PSA would drop after a while. Should it go back up and not be controllable by hormones, clinical trials or other chemical intervention need to be considered. This refractory hormone effect, on average, results in people only living for another year or two. On average. I am not sure where I got that from but I hope it is wrong. I do know that since two years is the average claimed, there are many who go longer than that, and I meet them all the time.

I know of cases where people have gone off of hormone treatment for ten or more years, although undergoing other treatments. Each person’s case is different. If all of the cancer was removed at radiation, and it was never expected to be because of the Gleason staging of 8, then of course the PSA, the primary recognized indicator of cancer progression, would not matter. It would always be zero.

POOR TRIALS?

Confronted with this information the oncologist said trials, however poorly designed or implemented they were, have shown that staying on the hormone treatment after three years, even if the PSA stays down, could lead to complications, such as strokes or heart attacks. He has yet to give me the literature reference to this assertion, and I am finding out that means of handling prostate cancer have advanced to the extent that those vague trials may not even be relevant. May not be relevant. So who decides when my "three years" are up?

I do.

When the best they could "promise me" for survival in 1996 was for five years, were three of those for the hormonal treatment to work itself out, and then two more years for the cancer to just grow beyond control?

One of the problems I had along with the prostate cancer, an outgrowth of benign prostatic hyperplasia (BPH), was urinary frequency, particularly annoying at night. My urologist recommended a drug called Cardura. I began with a 1 mg dose and worked by way up to 6 milligrams. It worked to the extent that my nocturnal frequency dropped from about eight to an occasional two over an eight-hour period. Then it began back up again, holding at about four.

A new problem then arose. I found myself bordering on dizziness and unsteadiness on my feet. During the dizzy part it felt as though my head was being pulled from behind. If I lay down it was ok.

I checked with the urologist who suggested that he could do a transurethal resection of the prostate (TURP) and reduce the pressure on the urethra which was restricting flow. First he wanted to make sure my urinary flow was ok, and it was found a month later to be just that, fine. In my view this confirmed my feelings that in no way should I have surgery on essentially a dried up prostate (due to radiation). Having a normal urinary flow apparently would suggest that a TURP might not help, so my urologist was betting on the worse case here. I had a good flow I was told, 240 cc at the rate of 25 cc/sec. Neither of us has broached the subject again as I did my own best to handle the nocturia.

Never had I felt the need, despite constant reminders, for having a portable urinal. Late in 1998 when in the hospital for a colonoscopy and blood loss recuperation, I decided to have one around simply because of the graduations in cubic centimeters and ounces on the container. Now I can test my own urinary flow more precisely; I no longer have urgency demands that I cannot handle.

What angered me at the urologist (we have not discussed this – yet) was (a) he did not even consider doing anything about the level of Cardura which I thought that might cause the unsteadiness, and (b) that he would consider a surgical procedure on a radiated prostate in which he himself had earlier indicated should not be subjected to surgery because of discovery of cancer in a seminal vesicle.

In August, 1999 the urologist suggested at my repeated complaint about the nocturia, to do a ultrasonic scan of the bladder. He did not suggest what he was looking for and what my options might then be. He did say that the frequency is due to the radiation ending in early 1997.

DROPPING CARDURA

After leaving his office I immediately dropped the Cardura intake to four milligrams, and seeing no change of nocturnal frequency (about four times), kept dropping the dosage a gram at a time until finally dropping it altogether without apparent change. Because Cardura is also a blood-pressure medication and I had been gaining weight despite my daily 45-minute walking routine, I then became more concerned than ever about my blood pressure, which has been holding its own.

So now armed with this information I went back to the urologists for my 28-day Lupron injection and ask the registered nurse if the doctor could prescribe something else in place of the Cardura. People do get drugs that let them sleep through the night, and although we are all different, I thought I must ask, since I am still losing sleep, which in part is the cause of my drained of energy feeling.

The nurse consulted with the urologist (he would not talk to me unless I set up a new appointment, a far cry from his cordiality and accessibility which led me to select him in the first place): she said that he had said that the continued nocturia was due to the radiation, completed close to two years earlier.

I didn’t believe it. Understand, I had "a very large" and "hard" prostate in September of 1996, and a small (20-25 cm) and soft prostate in the fall of 1998. Shouldn’t the pressures on the urethra have been significantly different, less, as a result?

Was it time for me to get a new urologist? A new radiation oncologist? A medical oncologist who specializes in prostate cancer? A quick check shows that there just are not too many oncologists who specialize in prostate cancer. Would a regular medical oncologist without such specialization be able to handle my case effectively, if anyone could?

The thinking was that I would continue with the current doctors for the expertise I know they had, but supplement my health consultations with someone who might specialize in other treatments, such as hormone and chemical should it come to that.

In mid-1999 I began a regimen of Flomax (.4 mg) for the nocturia, resulting in a heavier stream, but no change in frequency.

YOU MAY DIE WITH PROSTATE CANCER, BUT NOT BECAUSE OF IT

With that state of mind, I decided that perhaps I did not want to die of colon cancer and so when my regular time came for a sigmoidoscopic examination of my lower large intestine, I thought it would be wiser to ("go the whole nine yards" – not quite) and get the whole large intestine examined. This was done in May, 1998, some polyps that could develop into colon cancer were removed, and the gastoenterologist attending suggested a six-month follow up colonoscopy because of one suspicious polyp, mushroom shaped without a stem and difficult to handle because of proximity to the colon wall.

Six months later that follow-up colonoscopy was done on a Monday, some more polyps were removed, and it appeared that the May polyp of concern was gone from its lodging near the very upper end of the large intestine. The doctor had suggested and performed an upper GI endoscopy (EGD), not to be confused with the "upper-GI" so called in which x-rays are just taken of your intestinal tract after you ingest a liquid marker.

Everything seemed to go smoothly. With the conscious sedation I was awake the whole time, never felt a thing, as before. Two days later it was a different story.

In the middle of the night while making a bathroom call, I found myself sitting on the floor, apparently after fainting. The next thing I knew, instead of a bowel movement I filled the toilet bowl with blood! Or so it seemed: it was probably the normal bowel water plus blood. Five minutes later, after flushing, the process repeated with another bloody red situation.

At 8 a.m. when I awoke I produced a bloody stool, no bloody water, paged the doctor who told me to get to the hospital right away.. "I will be there."

I got there as quick as I could, was in the hospital for about five days (my Thanksgiving "dinner", like the other hospital meals, consisted of clear liquid servings of broth, Jello, and juice or coffee). The doctor never showed up, never called, or talked to me until he returned my call ten days after I left the hospital! I’ve said before that one should never get sick in America on a weekend, but the combination of weekend plus holiday is the pits.

A junior member of the firm of several gastroenterologists took over. He recommended my admittance to the hospital when he saw me at around 6 p.m. After I had been lying since 9:30 am flat on my back with an IV going and nothing else. A "bleed scan" given me in mid-afternoon did not reveal any source of leaking blood. I was so mad at lying there all day with no communication from my doctor that I had them disconnect the IV and was getting ready to walk out of the door. The doctor’s effort to convince me to stay failed.

Until he was momentarily paged and I made a rest stop, my first since early a.m., only to be rudely reminded that I had a serious medical problem that would not go away by itself if I went home and fumed about it.

I got myself admitted to the hospital, was immediately put on another IV, a clear liquid diet, and then prepared for another colonoscopy, the second in five days. In the meantime on the day after admission another doctor ("I am the senior member" of the firm) showed up to handle my case, popping in twice, about 4 p.m. and Midnight, after I had consumed about four liters of something to clear out my system, called GoLytely, a misnomer if ever, since it should have been called GoHeavilly. The nurses joked about it.

The nurses had me buzz them day and night for several days so that they could examine every single bowel movement, to confirm the worse and then observe the improvement when it came.

A fourth member of the medical group to which my gastroenterologist performed the colonoscopy, discovered a few more polyps, injected all polypectomy sites with something called ephincephrinine (I think), and that stopped the bleeding. She said that she never could find a specific source of bleeding, but she must have hit it. The original gastro doctor later said that sometimes scabs form after a polypectomy when a polyp is removed, and body motion could tear them loose, causing bleeding. He never could explain why four days after his procedure another doctor found some more polyps and removed them.

His explanation seemed to be that I have a fertile field for rapid polyp generation (four days—c’mon, give me a break), perhaps of genetic origin.

This is my explanation:

When the time came for the Monday pre-Thanksgiving colonoscopy, he found that I had not completely cleaned myself out. He wrote that in his report, a copy of which he gave me. Instead of refusing to do the procedure until a later date when I would be properly cleansed (perhaps with better instructions), he went ahead and performed the colonoscopy, essentially blind, since he couldn’t see everything. Something could have been cut or ripped along the way.

So there I was in the hospital, happy with colonoscopy #3 of 1998 because the bloody problem was cured, when they told me that my 26% HCT blood count was too low for me to go home. They give me 340 cc blood transfusion on Saturday, but on Sunday said that the new 28% HCT level was still too low, so another blood transfusion (about two hours also), this time with 415 cc. This time the HCT went up to 34.8%, still abnormally low, but sufficiently high for me to go home and let new blood cell development hopefully raise the blood count by the time it would be checked in a month.

Two weeks out of the hospital I was back to my normal energy levels, such as they are after being on double hormone blocking for going on three years, and I could re-focus my concerns on staying alive with prostate cancer. Never a dull moment. I missed my wife (who visited me daily (my computer, my daily walking regimen.

INTERMITTENT THERAPY

Finding a medical oncologist who specializes in prostate cancer was a challenge. In the Washington, DC area, and probably almost everywhere, that can be hard to identify. A young doctor gave a talk at my Bethesda, Maryland support group, introducing himself as a medical oncologist who specializes in prostate cancer: I took his business card, am now seeing him from time to time. I had been studying the backgrounds of many doctors and there just did not seem any in the Maryland suburbs of Washington, D. C., although there are many medical oncologists.

My thought was that I would enlist the services of a specialist who could guide me through intermittent therapy when it came to that. If I chose an older doctor long on experience he might be short on the latest technologies; if I chose a younger one short on experience, he might be better informed about what is going on: so this doctor seemed to fill the bill for the latter, and surprisingly, worked fairly close to my residence instead of a half-hour away.

I told him about my "plan" to go on intermittent therapy after hormonal blocking for three years (that would be September, 1999). To my great surprise he said that hormonal blocking was just a theory, and one to which he did not subscribe! He said that at Johns Hopkins in Baltimore where he had worked before moving to Bethesda just did not believe in intermitten hormone blocking (IHB).

Noting my determination, he said that he would however work with me when I began IHB. He said that we should first agree on an elevated PSA level at which time we would resume the blocking with hormones. He suggested ten: I suggested 5. He said 5 would not permit enough time for the initial hormone blocking to wear off: I said that it would drive me up the wall to let the PSA go to 10, I had never been measured at more than 7.6: he said perhaps we could compromise on that. He said it could take a year or longer.

The medical oncologist had said that I should stay on the hormones as long as I could, apparently willing for me to go refractory before he would recommend a treatment. That is not a theory I am willing to adhere to.

My urologist suggests three possible choices of PSA for when to resume hormonal blocking with Casodex and Lupron; no mention of Proscar for which there may be an indication that Proscar slows the time to resume the blocking: Proscar could lower the PSA readings by a factor of two, so that must be taken into account: perhaps resume CHB (chemical hormone blocking) when PSA reaches 2.5 with Proscar, or 5 without.

The choices: (1) three straight PSA rises at a steady rate (2) PSA=8 (3) PSA=10. The urologist prefers (1). Although he has examined "hundreds of prostate cancer patients", he has only dealt with three cases of IHB so far, something he has apparently just begun to believe is a viable treatment. He says that I could only stay off of the hormones for six to eight months, which sounds to me like a guess on his part. We see.

At the end of July, 1999 I attended the Prostate Cancer Research Institute’s Prostate Cancer Conference in Long Beach, California. Featured were Drs. Strum, Partin, D’Amico, Myers, and Small, among others. Most seem to support intermittent hormone therapy as a method of treatment. See study by Dr. Strum , the organizer of this Conference. Dr. Partin said that as an urologist he would not treat such patients but would recommend them to an oncologist. Dr. D’Amico recommends adding a new parameter to labelling one’s prostate cancer Stage, namely, the number of biopsies pinpointing the cancer.

September 19, 1999 was the 28th day after my August Lupron injection, and that was the day I took my last Casodex for a while. More than three years had gone by. A week or so later my radiation oncologist asked if I was experiencing any pain or other changes: after a week this was hardly the case, but at least I knew what he was looking for. Shudder. Both my medical oncologist and urologist had independently recommended that I start having my PSA measured monthly, which I started doing in October, 1999. It remained undetectable (<.1 by the new lab of the urologist--or was he using an assay that now could not detect as low as .01 which had been the case since 1996? A Lab spokesperson told me that the doctor could request a more sensitive PSA determination, but the doctor made the irresponsible remark that .01 or .1 limits are both undetectable and really do not make much difference; perhaps not to a doctor who does not have prostate cancer. The next PSA, from the lab of the medical oncologist was undetectable, which at this lab means also <0.1. I can live quite well with that.

At this writing here in the year 2000 I had been off of hormones for nine months with no noticeable effects or changes (hot flashes, PSA, weight) whatsoever.

So now that I have gone intermittent, follow me along!

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