TREATMEMT
Paul Shapiro's continuing narrative of his initial confrontation with Prostate Cancer
If by providing this narrative I can help just one member of CPCUG faced with the disease it would be my ultimate reward for everything I have ever written.
After much soul-searching and some internet and literature searches, I had decided on a treatment the idea of which I could feel least uncomfortable with. It is put this way because the medical profession and earlier patients advise that you select a treatment that you are comfortable with: put another way, a treatment choice that you can live with, if you but will! A radiation oncologist and an urologist were to become my medical team. They inform each other of their preferred treatment for me. Hoping that I am objective, I follow the plans they recommend if they make sense. It does not seem that there are that many choices.
It was pretty much agreed that I was going to have surgery or radiation by this time. Brachytherapy (seed implantation) and cryosurgery were ruled out because of the uncertainties of diagnosis regarding the extent of cancer distribution. The idea was to first go on androgen hormone blocking of testosterone production. This was to reduce the prostate size after several months to the point that would make things easier for the doctors. The surgery-radiation final decision could be postponed until after that.
So it was that I began the intake of two drugs, a 7.5 milligram Lupron rear-end muscle injection every four weeks, and an oral daily intake of something called Casodex, a small single fifty milligram pill looking like an aspirin tablet.
Casodex itself had only been in popular acceptance for about a year replacing a heavier dosage requirement (more pills per day), and possibly more side effects than the previously accepted drug Flutamide. Some doctors still waver on the choice. Weeks after I started this chemical hormone treatment some controversy (over the Internet) emerged about the wisdom of this, and some doctors on the West Coast were returning to the practice of treating newer patients with Flutamide. We now get a better picture of what the "practice" means in the terms "medical practice." I have had no known problems with Casodex after over a year's use.
In fact the hormone treatment has been working, as far as it goes. My PSA of 7.56 at diagnosis had dropped to 2.57 in September, 0.76 by the end of the year 1996, 0.01 as 1997 winds down.
PSA, the amount of prostate serum antigen secreted into the blood stream by the prostate gland is usually an early marker of prostate cancer presence. Your regular physician can administer is by taking a small blood sample from your arm.
What was not known was the extent to which the prostate gland was shrinking, if at all. An ultra-sonic rectal scan was performed to see exactly what size it was. This electronic probe produced a TV-screen image from which the size of the gland was estimated fairly accurately. It was Large.
Our society has been acclimatized to the thinking that when prostate cancer is discovered, the prostate gland should be surgically removed as soon as possible.
That's not the way life is. This kind of thinking, and those who do it, block out the other possibilities. It is what leads to a preponderance of the "get it out now" philosophy. The other possibilities cannot be ignored. Since prostate cancer starts in the prostate gland, and spreads from there, it only makes sense to get to the gland before the cancer spreads and have the gland out, along with the cancer. The phrase is, if the cancer is confined to the prostate capsule, take out the prostate gland and be done with it. All too often the caveat is overlooked.
The fact that nerve-sparing surgery is often not successful is attributed by some to the fact that not all surgeons are sufficiently proficient; in this view the procedure always does the job if properly done. Or the way I see it, by definition, if the cancer is not all removed by taking out the prostate (and the nerves preserving sexual function not "spared"), then it was poor surgical handling. This view does not support the notion that if the cancer is not all removed from a man that the cancer was not all completely contained within the prostate in the first place!
The catch is, no one can tell for sure if the cancer has "escaped" the capsule. There are ways of "guestimating", with your life, and this is done. A needle biopsy of samples of the prostate tissue are examined, and a qualitative rating, called a Gleason score (a number from two to ten, ten bad) is given. The pathologist looking at the samples decides to what extent cancer cells can be distinguished from others: the better the distinction ("moderately or well differentiated" are the terms), the lower the score. Its not good to have cancer cells at all, but if you must have them, poorly differentiated is worse than moderately differentiated. Scores of two to seven signify moderate differentiation. A Gleason score of 8 to 10 is what you would rather not have, if any at all! Mine was eight, poorly differentiated.
Statistical tabulations of different pathology studies have led to a widely accepted summary of probabilities that cancer has escaped the prostate, based on PSA and Gleason scores. These "Partin's Tables" (named after the originating doctor, as was the Gleason score after the originating physician) give so-called predictions of the chances of the cancer escaping the capsule, and even invading nearby seminal vesicles and lymph nodes. Original prostate cancer diagnosis is heavily predicated on the likelihood that the cancer has not escaped the capsule. In any event the cancer expansion likelihood is interpreted by a series of probabilities. Since my treatment was completed a later series of probabilities, more optimistic, have been published.
My chances were given as more than 50 % that the cancer had escaped the capsule, but less than that that it had gotten into the seminal vesicles or lymph glands. Bad things would be that much worse in such cases because the possibility loomed large that the cancer had entered the blood stream, spread to other parts of the body, primarily to the bones, leading to ultimate terminal breakdown. [By now we all known the story about Paul Tsongas, the late New England U. S. Senator, whose cancer (lymphoma, not prostate) was "cured" by having bone-marrow transplants which caused liver problems, leading him to die because of pneumonia, the statistics will show.] So then comes the whammy of my ultrasonic exam in late October: cancer was evident in one seminal vesicle. I was both emotionally and physically blinded from seeing the spot on the screen which the doctor was showing me. (I have even had one doctor on the internet tell me that he could not have seen such a spot, since a tumor and the seminal vesicle both show up in indistinguishable black on a TRUS (transonic ultrasonic scan). He later hedged when I suggested the shades of gray that were actually seen.
My urologist,noting the offending image during the TRUS said that this precluded surgery. Removing the prostate just would not remove all of the cancer. Of course this was what I had been told by the urologist who first broke the cancer news to me. He had said that the Partin's Tables would preclude him, a surgeon by profession, from considering a surgical prostate gland removal. Not wanting to believe him I naturally went to other doctors. Almost three months later he was "proved" right.
So there I was: what do I do now? The oncologist said that it was not unusual for seminal vesicle invasion, despite the small probabilities. She said that the radiation treatment would take that into account and could possibly kill the cancer there. We were going to try.
Meanwhile I kept up the Lupron and Casodex, wondering how long it would be for the radiation to begin. I had thought it was dependent on how small the prostate gland was getting, but it wasn't getting significantly smaller. And who knows how long the drug treatments could suppress more cancer growth (estimates are from one to two years before hormone resistance and ineffectiveness sets in; some doctors are even now saying it could be three to five years or longer). The thought of becoming hormone refractory hangs over me as an ever-present threat.
It was then that I fantasized that the radiation itself would not begin until the spring of 1997. I would not have to encounter the snowy and icy driving conditions of the type that we had in the local Washington D. C. area during the Great Blizzard of 1996.
Since surprises are nothing new, imagine my reaction when the oncologist called in early December and said that she would like to schedule the pre-treatment radiation planning session for December 20, possibly starting with the first of forty weekday radiation treatments; or shortly thereafter. The snow season.
The prostate gland wasn't really getting noticeably smaller, I had had the three-months of combined Lupron-Casodex hormone treatment (the statistically recognized best pre-treatment period for such), and it was time to get on with it. My dismay at cutting short the prostate-reduction period (my internet sources, doctors on the West Coast again, indicated six to eight months were preferable) lead to another frustration.
If I insisted on waiting longer the chances of the cancer spreading, omni-present, would continue. Being told even by doctors not in my shoes that I should not worry did not help: "prostate cancer develops so slowly that it wouldn't make any difference" if I pondered my decision for a while ("but not too long"). It seemed to me that more radiation would have to be applied over a more vaguely defined area if I bided my time. Furthermore, the cat was out of the bag, so to speak. Ugh.
It was then that I became a regular visitor at Georgetown University's Lombardi Cancer Center in one of those tall buildings adjacent to Shady Grove Hospital. I would first take a 30-45 minute daily walk at a local mall (alternating between White Flint and Montgomery), take a full glass of water, then the drive. As I later tired during the treatments my walking times decreased: I became pooped earlier each day as the sessions wore on.
Radiation began on December 26. There was a Thursday in mid January that I was so obsessed with the need to meet my treatment time, that I cast my snow-driving inhibitions aside and drove in for the appointment. Those who really know me can appreciate how great my concern was.
That Thursday my snow tires held, I never saw concrete or blacktop, it was a rather exhilarating day in all: the radiation lab had decided to shut down shortly after I and the one only other patient showed up: I couldn't get across the fact that the road conditions were not that bad (I still had the return trip to make). The fact that the Montgomery County School System hadn't shut down apparently had convinced only one person, me, that it was ok to drive. The County took some heat for their inaction. In hindsight I must admit, it wasn't really ok to drive but once I was committed I went into denial.
The treatments themselves were as purely routine as can be. Although it took about seventy minutes for my round trip to each treatment, it took about five minutes for the treatments themselves, four or six radiation periods usually under thirty seconds each, with some brief periods for set-up and time when the therapists left the radiation area for brief periods.
Patients were scheduled at ten minute intervals. The cancer treatment "industry" is booming. The original stoic faces of those waiting their turn ultimately developed into a friendly atmosphere as the common bond of an undesirable experience led to a camaderie of sorts.
I lay there on the table bared to my hospital gown, counting. One thousand...two thousand...three thousand.... The buzzing sound indicating radiation droned on. Lay perfectly still, except for normal relaxed breathing, easy to do: just don't sneeze, scratch face, or move around. Have trust in the therapists doing their job and don't mess it up by having the radiation come at you in a different place than intended. The therapists tie your feet together to keep you in position on one end, and trust you on the other. Simple as it sounds, when I developed a mild flu-like cold, I had to concentrate on postponing my coughs between radiation dosages.
You are also supposed to keep your bladder full by drinking eight or more ounces of fluid twenty or more minutes before treatment time. I was not always successful except at taking the drinks. The workers were very cooperative.
The idea is to have an accumulated total of 7200 "rads" of radiation during the 40-day period of treatment. During the first five weeks radiation was aimed at me from four different directions, ninety degrees apart. A rad is a unit of radiation (roentgen, or radiation absorbed dose).
Initially bursts were aimed at 0, 180, 270, and 90 degrees as I lay still on my back in a supine position. During the final weeks, when I lay face down (prone), the beams were aimed at 225, 270, 345, 45, 90, and 135 degrees, with dosages of 61.2 rads total in two of those directions, and 122.1 rads in the other four.
Originally they told me I would receive the total radiation in forty applications. They actually gave me 183.6 rads each session, leading to "only" 39 sessions to keep the total under 7200 rads.
Every week during the course of my treatment blood count tests were made. I updated the values of over a dozen spreadsheet graphs while tracing the ups and downs of such things as white blood count, red blood count, hemoglobin, hematocrit, and platelet, among others. However interesting and strong my interest in this, most of it was a mystery to me as it was difficult to establish whether things were going ok. (It was all together too easy to watch my weight graph go back up to its 1995 overweight level, and climbing). I queried the doctors, received assurance, and came through all right without incident. Where I could establish things as being out of the normal range I was told that the lowered testosterone due to hormonal treatment had resulted in reduced blood counts resembling the female norm and was not unusual. In my circumstances it would be temporary I was told. My concern was that my immune system would be critically impaired. The doctors did not voluntarily discuss these blood counts which I took to mean that there was no need to be concerned. I was concerned.
Also, about once a week x-rays were taken prior to the treatments, from the prone or supine position, as an aid to the technicians for establishing and maintaining radiation aiming precision. The lifelong objective, until now, of trying to minimize use of x-rays is tossed out the window. I guess the doctors figure that it is a trade-off, and if worse comes to worse, they are in a position to handle the consequences. Ugh Again
HELP FROM THE INTERNET
What the consequences of worse coming to worse are or will be I may never know. To get an idea of some of the possibilities in this whole business I early on used my computer to seek out information on the internet.
In the past I have alluded to internet mailing lists, so I specifically want to point you to the Prostate Problems Mailing List, now somewhat affectionately dubbed the PPML. It is a unique group of people drawn together by their shared misfortune who in time of crisis have successfully sought out a source of information and support that money alone would be hard to buy in such a timely manner. Unfortunately it is only available to the relatively small percentage of the population who are have the computer facility and knowhow, have cancer; and can discern what is believable.
Many of the spouses, daughters, sons and even parents of computer illiterate prostate cancer patients subscribe to this list on behalf of a patient. Some of us (experts?) even offer suggestions based on altogether too few personal experiences; this has limited value. Some patients, in their desperation, are often quick to accept information from anyone who addresses their subjects of concern. I have found it necessary at times to post a disclaimer to the effect that I have no medical training but am a patient, my free advice may not be worth the cost. Any kind of information received on the internet (or even here!) should be questioned independently as to its validity. Concerned and scared prostate cancer patients often learn the jargon early so that to the uninitiated what they read takes on the appearance of a medical certainty that just cannot be universally applied, if at all.
You can join this list for free (and later unsubscribe, like any other) by addressing e-mail to LISTSERV@MAELSTROM.STJOHNS.EDU, no subject, and SUB PROSTATE Your Name in the body of the message. [NOTE: The List address has changed: see "Follow-up" Part below.] Not only is this a superbly maintained list, there is a super archive of all messages sent. Its main stumbling block is that there is so much information being sent back and forth, by patients, doctors, and researchers, that it is hard to keep up for "fear" of missing out on a possible life-saving suggestion. What I have done is save all of the messages, including those that I do not feel should be read at the time, if ever; with a ZIP disk I estimate I can put the currently required 20 megabytes per year into storage. Use of a quick text search file (one called FINDTEXT, another LOOKFOR) on the entire or a subset of these files makes it a snap to look up stuff of interest as new questions arise from current messages where the "whole story" is not known. Once I got caught up from the archives on-line, I was able to download the current material about once a month, there generally being five files, one for each week or fraction.
This really came in handy when a man from Illinois called to say that he intended coming to the Washington area to visit his son and wanted to get in touch with me to compare prostate notes. I was able to quickly search my files and read what he had written, learn where he was from (he didn't tell me), and find out a little about where he is prostate-cancer coming from. Try that with info about me and you are likely to learn more than you care, unless you have prostate cancer yourself.
To query doctors directly, join the "physician to patient list p2p" by typing
subscribe p2p Your Name
in the body of a message addressed to majordomo@rattler.cameron.edu
Although the time demands on them are great, and the number of partcipating doctors are few in number, we all benefit from their efforts. Some are given grants to enable this participation and I hope the practice increases. It doesn't take long to learn the specialties of these physicians and establish their areas of expertise and preference. The nice thing is that you can ask them technical questions, get answers, in writing, albeit from a distance. Some patients are so impressed that they travel large distances just to be treated by some of them. This is particularly true for those not living near large metropolitain areas.
There is also a mailing list for supporters of cancer patients, spouses, relatives, and friends, who are so distraught that they need help and information on what to do. For this one send a message to Majordomo@rattler.cameron.edu with body message subscribe circle Your Name. This can be an interesting on-going way to get pointed in the right direction and keep current.
Once started, should you be so misfortunate as to want to start, the search for many information bearing World Wide Web internet sites results in many being found. There are university sites (such as one in St. Louis on radiation, one in Georgia on "seeding" and radiation, one in California on proton therapy) and doctors and patients contributing their expertise.
Not all medical sites can be tapped for information on the internet, but things are changing rapidly: just because I didn't mention areas such as Chicago, Boston, Michigan, Texas, New York, etc., only reflects the relative parsity of internet info from those major medical centers at the time I was desperately hunting. Sorting it all out is the challenge. The individual must adopt a way of filtering the voluminous material. This is no easy job when under both the ordinary pressures of internet mail handling and the matter of struggling with the horrendous burden of concern for one's life.
E-mail and mailing lists were not my only internet sources. Newsgroups, such as alt.support.cancer and sci.med.prostate.cancer are also good places to hang out. The problem with newsgroups is that there are so many messages to weed through that it becomes almost impossible to deal with but for a great timesaver such as the web page at dejanews.com. Search on a key word there (such as "sinusitis"), and up pops messages from AlL Usenet newsgrou+ps dealing with relevant material. The message in the indicated newsgroup is directly accessible from a link provided. If you are snoopy, you can actually search on someone's email address and see what they are writing in the various newsgroups; because of this facility it is easy to be reminded how public the whole internet is.
One final reference that I must point out is the ongoing prostate cancer dialogue by Don Cooley, a patient in San Jose, California, who is putting out a remarkable home page on his medical situation, thoughts, experiences and concerns. His treatment decision was for brachyterapy and radiation; if you are just starting out with "the problem" I highly recommend this Page; his depth and coverage is remarkable.
WHAT NOW?
The fact that I had sinusitis and bronchitis for a few months after the conclusion of my treatment is not one that I attribute to a lowered immune system. I think.
It was when my "3D Conformal High Beam Radiation" treatment began that I was a little disappointed in not seeing fancy radiation directional equipment being used. I made inquiries on the internet and of course with my oncologist. The upshot of this is that there are radiation treatments and there are radiation treatments. Mine would involve broader areas of coverage with one dosage and then later more specific areas of radiation with other dosages, as described earlier.
For me an introductory personal tour of the facilities and specifically what they were going to use on me would have been quite in order. Most patients probably do not have this intrinsic need. My internet studies have shown that patients at some facilities are given this kind of information up front.
It all boils down to the individual. Each person's situation, condition, is different. Each doctor's treatment Plan is different. Putting them all together is what goes into trying the best way known to eliminate the cancer.
For me this whole business can be viewed as occurring in three phases. Diagnosis, Treatment, Followup. I will cover the latter phase, which covers the longest period, in the final of this three part series of MicroLetters: how I plan and am monitoring the effective cure status of the treatment that I am getting. This means taking blood tests for the rest of my life, hopefully at a not too frequent interval, and verifying that there is no emergence of cancer elsewhere that escaped the treatments of 1996 and 1997.
And a lot of praying.
For starters I indeed look forward to a full and happy New Year, and wish the same to you.
In the narrowest sense of the word you could say I am a cancer survivor. I have a form of cancer, am still alive. I am in remission. No pun intended, I can live with it.
And I will.
