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  • To Screen or Not to Screen - 18 years ago tonight

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    Old 01-10-2018, 04:56 PM   #16
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    Re: To Screen or Not to Screen - 18 years ago tonight

    My Second PSA Result

    This day eighteen years ago fell on a Monday. My wife and I felt that by this time the hospital in California must have fixed its PSA lab equipment and that my result would be ready. We held out some hope that the result would be in the 40s, indicating infarction as the problem, which would indicate a less aggressive case, which the doctor there had described as a real possibility.

    I called in the early morning, and a staff person said the result was indeed finally in, but that the doctor would be reviewing it and calling me with the result.

    Later in the day the doctor called: my result was 125! That was substantially higher than my original 113.6, the exact opposite of what we had hoped for. My PSA had gone up by about 12 in just one week!

    The doctor explained that this confirmed the earlier test, and that the increase was normal due to a Lupron shot with nothing given (such as Casodex) to prevent the well-known "flare" phenomenon: a brief increase in testosterone, producing in turn a surge in PSA, before the body convinces itself that there is too much testosterone and shuts down production from the testes. His confident manner led us to believe him, but it was clear by now that I was facing very aggressive prostate cancer. We could not see it any other way.

    The doctor thoroughly endorsed my decision to go in the coming morning for a "second" opinion (actually the fourth opinion) at the renowned East Coast institution mentioned in a previous post.

    It took some years before I realized that it was unlikely the PSA processing equipment had ever been broken. I strongly suspect that the staff and doctor were so unused to seeing such a high result (125) in 1999 that they reran the test. While that kind of result had been common when PSA testing was first introduced - an era when cancer was not detected until it was well advanced, by late 1999 such results were infrequent if not rare, as they are today for newly diagnosed patients.

    My wife and I were glad we had the result as evidence for my upcoming consultation the next morning, January 11.

    Last edited by IADT3since2000; 01-11-2018 at 05:17 AM. Reason: Removed repeated word.

     
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    Old 01-11-2018, 08:01 PM   #17
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Eighteen years ago today, January 11, was a Tuesday, the day for my late morning appointment with the urologist at the East Coast medical institution known world-wide for its treatment of prostate cancer patients. This followed my attempt to schedule surgery there, which the staff had summarily rejected because of high-risk features of my case. Years later I would be grateful they had rejected me, having realized that surgery for me would almost certainly not have been curative but would instead have saddled me with unnecessary side effects. But at the time I was still feeling like a rather hopeless reject.

    (Later addition of 1/13/18: now, meaning by 2016 or perhaps a little earlier, the pendulum has swung again: some kind of local therapy - usually radiation, surgery, or both - to eliminate the cancer in and right around the prostate is considered by some leading experts to be the foundation for a shot at a cure or otherwise desirable result - such as turning the cancer into a tolerable chronic situation rather than a deadly one - for patients suspected to have more widely spread cancer. Usually androgen deprivation therapy is involved with or shortly after the local therapy and continues for some time, either continuously, for a set period, or intermittently. These days advanced imaging that can detect extremely small metastases, say of 2 to 3 millimeters in diameter - can be employed, and, if not too many are found and they are in safely accessible areas, spot treatment(s) sometimes makes such patients cancer free. Powerful new drugs are also often employed. However, back in 2000 and for too many years thereafter, local surgery would not have provided a good foundation as there was little technology to deal with metastases beyond ADT and chemo, and while both were almost always helpful for a limited time for those with metastases, they were rarely, if ever, curative. ADT is typically effective for many years for those with advanced but non-metastatic disease.)

    The day was sunny with just a few clouds, but the wind made the above average temperature feel like a typical January day in the Washington, DC area. I went to work first for a few hours, and then made my way north for the appointment around noon.

    I was booked in, including production of a plastic credit card-like identification card, and went up to the fourth floor, taking the stairs, which I did with ease as I was quite fit at the time. Blood was drawn for another PSA test, which would give a look at how my PSA was changing two weeks after the previous test on December 27. I completed what seemed like a pile of paperwork, including an estimate of my hair loss/baldness, which the staff was using for research on prostate cancer risk.

    Finally Dr. S invited me into his exam room. I remember his careful review of my records. He then performed the most thorough DRE I have ever had (the fourth at this point, but far from the last). I wondered if the doctor had ever heard of the “finger wave” concept; I supposed not; he really spent some quality time in that exam! (Not all DREs are created equal.) It was not comfortable, and it was a relief when he was done.

    He asked why my wife had not come with me, and I explained that she had come down with a bad cold; I appreciated that he was concerned about communicating with both of us. He then gave me his assessment, based on my two PSAs over 100, my biopsy with extensive cancer in all eight cores (most 100%), perineural invasion, my Gleason score of 4+3=7 per the world-renowned pathological team at his institution, my negative bone and CT scans, the notes from the doctor in California, and the just completed DRE exam: a “rock hard” prostate, with the cancer likely extending through the capsule, plus likely seminal lymph node involvement, which caused him to increase my stage to 3.

    Early on he echoed the doctor in California, saying that the PSA surge from 113.6 to 125 was a temporary effect of the Lupron, and that my PSA would soon fall. He said surgery would probably be a waste – he had not seen good outcomes when PSAs were over 100 in my circumstances, though he held out the slimmest of chances if the ProstaScint result were favorable. He said the cancer was probably not currently curable, and if it extended much outside the prostate, even use of radioactive seeds would not help. He thought that external beam radiation might help some.

    He did believe that a ProstaScint scan – which was imagery at the leading edge of the art at the time - would help spot any metastatic spread that could not be picked up by the less sensitive bone and CT scan; I had the impression he expected the result would be positive for metastatic cancer, probably a lot of it. He did emphasize that androgen deprivation therapy (aka hormonal therapy, at that time for me the Lupron which I was already on) virtually always was effective for a time, but that the time was limited. He also recommended a consultation with one of their expert medical oncologists as they might know about any breakthroughs that could help.

    However, he offset these somewhat optimistic words with his answer to my request for a prognosis: three good years, and then two declining years – five years to live. (That made two respected doctors who were giving me the same prognosis: five years. I felt they must have been reading from the same sheet of music – the same research. With a respected doctor on each coast giving me this prognosis, their forecasts sounded pretty convincing.)

    I thanked Dr. S and scheduled the ProstaScint test with the staff for February 11.

    I liked Dr. S, but his assessment had been pretty blunt and without much warmth to cushion the message, delivered “Dutch uncle” fashion. The thought ran through my mind that the hospital in California was a “center of hope” while this place was “the center of no hope.” Of course I knew this was not true, but it was how I felt at the time. However I also very much appreciated the doctor’s evident expertise and thoroughness, even the DRE. Overall, I felt I had found a good place to manage my fight against the cancer.

    On the way home a common highway sight – a wrecker hauling a crashed car – caught my thoughts. Here I was, immersed for a month now in the throes of deep concern about likely dying from prostate cancer, yet I was alive and – apart from my diagnosis – active and thriving. The person driving that car had probably been happily and contentedly going about their business a day or two earlier; but, judging from the smashed windshield in front of the driver and the mangled mess of metal, almost surely had not survived the crash. I reflected on the odd and sudden, unexpected turns that life can take, and in an odd way I felt at peace.

    On arriving home I relayed all that had happened to my wife.

    Last edited by IADT3since2000; 01-13-2018 at 10:09 AM. Reason: Restoring text blocked by software problem. 1/18: added paragraph re local therapy as a foundation for met. disease.

     
    Old 01-16-2018, 09:32 AM   #18
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    Re: To Screen or Not to Screen - 18 years ago tonight

    My Third PSA Test

    Eighteen years and two days ago, Friday, January 14 and the third day after my third PSA test on January 11, nurse Tammy called from Dr. S's office: my PSA was 89.1! She called it a significant drop. At this point I still did not know much about PSA behavior and androgen deprivation therapy, but my wife and I were delighted! Obviously my PSA was going in the right direction, and the fact that there had been a big decline, as the doctors had predicted, gave us a lot of assurance both that my case was not a really strange anomaly and that doctors were familiar with my kind of case. The decline had been 24.5 points below my original level, prior to Lupron, of 113.6, and 35.9 points below the level on December 27! Clearly the Lupron was working.

    I made the decision to go public with my situation. Having a secure job, already with rights to retirement and a decent pension, made that decision easier. On January 13 I gave a speech at my Toastmasters Club - a public speaking mutual training group - "An Apple a Day" [Keeps the Doctor Away]. I illustrated my plight on the wall-to-wall blackboard at the front of the room, drawing a large dot to show zero PSA on the left side, then a line going several inches to the right with a dot to show a PSA of 4 that was usually (back then) a trigger for concern, and finally, a long line extending most of the way across the board with a final dot to mark my first PSA of 113.6! I heard some gasps and saw distressed faces looking back at me. Toastmasters is a highly supportive organization, and my friends there boosted my morale.

    That night I noted that the hot flashes had become more intense and frequent - a real nuisance! My recollection is that I was having about three flashes per hour during the day, and during the night I was waking up several times with flashes and sweating. I was also sensing a degree of developing impotence, another consequence of the Lupron shot.

    As of January 16, 18 years ago, my wife and I had been talking to friends and fellow church members, and we were finding that many had had prostate cancer or knew friends and family members who had had it. While most had had fairly "routine" cases, a few had challenging cases but were doing well. I had also learned about a man in a nearby building at work, a building I visited for business, who had also been diagnosed with a challenging case. (I would not know it for a few months, but he only survived for three months. I now believe he most likely had one of the rare highly aggressive cases that was probably discovered very late, with no good options back in 2000.)

    Over the past weeks I had been reading all I could find on prostate cancer. As of that night, I had virtually finished a book by a famous, pioneering prostate cancer surgeon that was considered the "bible" for prostate cancer by many, and back in those days surgery was deservedly considered "the gold standard" for prostate cancer. I was disturbed that he didn't think much of hormonal therapy (also known as ADT, or androgen deprivation therapy), and it was not until some time later that I realized that he didn't actually know much about it, despite his deserved reputation for surgery.

    In one sense, that is a fault; in another sense it is understandable as medicine has become so complex that doctors have to specialize. I have learned that prostate cancer surgeons typically do not know drugs or radiation therapy in depth, that radiation oncologists typically do not know surgery and drugs in depth, and that medical oncologists, while typically knowing much more about drug-based therapy, are often not up-to-speed on surgery or radiation. That said, I've also found there is a small number of doctors who have a good grasp of their own limitations but do have an informed appreciation of all the therapies.

    All in all, by January 16, 18 years ago, I was beginning to see a glimmer of success in what looked like a desperate battle against prostate cancer. However, my wife, I, and my doctors all expected that this success was what one could hope for within the prognosis of three good years and two declining years. While we felt a bit of relief, we were by no means jumping for joy.

     
    Old 01-23-2018, 07:54 PM   #19
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Second Lupron Shot - 18 Years Ago

    Eighteen years and two days ago was January 21, a Friday. My second Lupron shot had been scheduled for the day before, but a heavy snow storm had shut down the doctor's office. By Friday the snow was cleared enough that the office was open, and I got my shot.

    I was going to an office not far from my home as the doctors there had agreed to give me the shots while I worked with that major institution to further assess my case and perhaps move beyond Lupron alone, with radiation or a clinical trial as possibilities. The practice had been highly recommended by a church member, and I was pleased with my consultation before the shot. The doctor did another DRE, and he concurred that my stage was T3, meaning the cancer had spread beyond the prostate.

    Over the past few days my wife and I had talked about establishing "cancer free time" in our life, in other words, time we did not talk about cancer and focused on other things. The Big C had been a pretty dominating presence over the past month and a half; we both needed a break. The cancer free time tactic worked fairly well.

    This day 18 years ago - January 23 - was a Sunday. I was getting a lot of support from several people in my church.

    Today, January 23, 2018, I had a PSA test. This will be my last test until April, the month of my fifth year anniversary from completing radiation therapy. All my tests since radiation, and since completing supportive androgen deprivation (aka hormonal) therapy, have been unusually good: no result has ever been above "less than 0.05," which is the lower limit of the brand of PSA test used by my oncologist's practice in recent years. (They used to use a test good to less than 0.01, but they had to ship it out, and they do this current test in house. I liked the extra precision, but I don't need that extra precision much now, and the result is available sooner.) Usually PSAs will be higher for patients after radiation, even when they have been cured, especially if they never had surgery before the radiation, and therefore still had an intact prostate gland, like me.

    It sure would be nice if I got that same result again! Eighteen years ago I would not have believed I would be doing so well a this point. Indeed, I did not expect to be alive at the five year point. I'm grateful!

     
    Old 02-04-2018, 10:24 AM   #20
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Parting with my original urologist

    Growing uneasiness and doubt: Over the course of this week eighteen years ago I was realizing that my first urologist, who had seen me the morning after my fateful PSA test and done my biopsy, who had seemed like the stabilizing foundation of my medical team in those early days a month before, should no longer be part of my team. I had had several consultations since seeing him, and each contributed to my growing doubt that he was a good fit for me. I had now had had consultations with three doctors who had done much more than the original doctor to help me understand my situation and suggest reasonable options, all with a bit of hope.

    It was now clear that his plan to wait for about a month until he returned from his vacation half way around the world was in his interest - gaining a patient, but not mine. It was clear that his staff had been unresponsive and even obstructive in my attempt to have that first Lupron shot and a second opinion. My wife had also shared the doctor’s very pessimistic comment to her – “If only he had come to me earlier, I could have helped him.” - as I was cleaning up from the exam in another room. That kind of pessimism is toxic – the last thing we needed.

    His office was also about an hour's trip from my home, through heavy traffic. The doctor who recommended him evidently thought he still worked out of an office not far from my home, but I later learned that his sole office mate doctor, who rented the office, had had to suspend or resign from his medical practice because of a disciplinary proceeding. Evidently the recommending doctor was trying to help a colleague get back on his feet. I understand that, but, again, it was in the doctor’s best interest and not mine. Moreover, while he was known as an excellent surgeon for kidneys, he was not known for his prostate work.

    My decision: I actually made up a two column list of pros and cons for staying with my original doctor. It was clear that he was not a good fit for me. I would not see my original urologist again.

    Importance of a good fit: I did not know it yet, but for me – not for all of us – it would be important to have a doctor who was committed to doctor/patient partnership and in nurturing an empowered patient, not a passive patient eager to blindly follow what the doctor pontificated. The doctor who gave me that welcome, compassionate, and informing consultation at the center of hope in the Los Angeles area, though I appreciated him greatly and have a high regard for his competence based on his reputation, might also not have been a good fit even if he were located nearby instead of across the country. He had advised me to find a doctor I could trust, and then put my fate in his hands, accepting him as the captain of my ship, so to speak. I believe that is a good strategy for many patients, but it just did not fit my nature and background, especially my background in experimental design, statistics, logical reasoning, and research.

    I believe patients and their supportive loved ones should become empowered with knowledge about prostate cancer and their own case and options as much as they can. Yet some of us will be uncomfortable with empowerment, and for such patients the best approach could be to find a well recommended doctor/team and stick with that doctor unless it becomes clear that the relationship is not working. Finding the “right” doctor is kind of like finding the right diet: research says the Mediterranean diet and some others are clearly superior, but if a diet works for you, that is probably the best one for you. It took the better part of a year for me to finally settle on my team, and it would be a very empowering, partnership type of team, but that’s another story.

    Not chiseled in stone: For the time being I was happy with the doctor and team at that major mid-Atlantic medical institution, and I was pleased with the two local doctors who would be able to give me my Lupron shots at their office which was an easy drive from my house. This was a tentative period; I would need to have the results of the upcoming ProstaScint test to have a better view of the landscape of reasonable choices, and that would be key to finding my medical team. At the moment, a clinical trial looked likely, with perhaps an outside shot at radiation supported by androgen deprivation therapy ADT (aka hormonal therapy, hormonal blockade, and some other names). Relying on ADT as sole therapy for the next thirteen years, which is what I did so effectively prior to advanced imaging and radiation in 2013 (that would not be possible until years after 2000), was not even on my radar at this time. (I would have been able to have had radiation within months of diagnosis, after starting supportive ADT, if I had been diagnosed more recently instead of in 1999.)

    Many of us face this decision whether to part with a doctor: Over the years there have been many posts on this board about whether to change doctors. My own experience leads me to think that this will not be a comfortable process or decision for most of us. But I also believe it is important to have a fit of doctor and patient that is at least satisfactory.

     
    Old 02-05-2018, 01:19 PM   #21
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Diet Changes and Weight Gain, and Later Control on ADT

    This date, February 5, was a Saturday eighteen years ago.

    Weight: As usual I stepped on the scale in the morning weighed 149, an increase from 148 the day before. While 149 was an excellent weight for my height, my weight of 148 the day before would be the last time I would weigh 148 or lower for many years – a side effect of the Lupron element of androgen deprivation therapy (ADT). In fact, I would come to believe that a higher weight, in the 150s, was normal for me. My weight would peak during my third round of ADT in June 2009 at 167. This was despite an active exercise program and taking care with portion size and what I ate at lunch and dinner.

    Countermeasures to weight gain: I would not realize until my third vacation from ADT, in the fall of 2009, that there were other tactics that could give me control of my weight. One simple tactic was reducing the portion of cereal in my breakfast. In mid-2011 I would learn that combining a branch chained amino acid pill before a morning workout, continuing a fast from the previous day’s dinner until noon, and taking another BCAA pill, basically put me in complete control of my weight. While on vacation from ADT, my weight plunged. When I started my final round of ADT in July of 2011, using the BCAA tactic, instead of increasing as during previous rounds of ADT, my weight kept declining (from 151 to 142, at which point I was advised to gain a few pounds. In other words, despite ADT, I was in excellent control of my weight! I have been able to maintain my weight below 150, usually at about 148 pounds, ever since. I was advised about BCAA pills by a highly talented oncologist who had thoroughly examined me and my case. However, I believe BCAA use does not require medical supervision. That said, it would be wise for someone thinking about that tactic to check with their doctor.

    Diet Changes: Eighteen years ago I was also radically changing my diet. There was a hand out sheet about diet for prostate cancer patients in the doctor’s office when I got my second Lupron shot. Financier and prostate cancer author/survivor/advocate Michael Milken’s advice was included, and a lot of us came to follow his lead in those days, which made sense as research supported his points (and continues to support the gist of his advice). Essentially, this involved moving away from a Western diet to healthier diets, especially the Mediterranean diet. Within a year I was following expert advice from a renowned medical oncologist (the same doctor who advised me to use BCAA pills) who has written a couple of books on diet and prostate cancer, such as Beating Prostate Cancer: Hormonal Therapy & Diet, as well as providing countless tips in his newsletters. For years I stopped using butter, milk, cheese, and other dairy products. For some years I ate almost no bread. I ate no red meat at all (beef, lamb, pork). I stepped up consumption of plant-based food, fish and tomato products; in fact, for that first year, my wife practically insisted I consume 12 ounces of stewed tomatoes at dinner. (That got old fast! Ugh!) I stepped up green tea consumption from about three bags a day to fourteen (during the early years, now down to “just” 6), basically substituting green tea for coffee, and brewing the tea with lemon juice to preserve strength and stirring. (I consumed two bags at a time in a 12 ounce mug.) At some point I began consuming boiled or steamed broccoli daily. I stopped using corn oil and relied on olive oil, also reducing other saturated fat and increasing poly and monounsaturated fat, all supported by heart and prostate research.

    Adjustment to Diet Changes It took some adjustment before I was comfortable with this diet. Now I like it very much, but back at the beginning, my sense of taste had not adapted to the lower level of saturated fat, so food was not as tasty. I also went through a time of adjustment when breaking down the plant food meant more gas, to be blunt about it. The good news is that that “passes.” For me, my recollection is that it took several weeks to a month or two to get back to normal. I suspect this is typical but have seen no research.

    SupplementsI also started taking a number of supplements that were supported by research. Two prominent ones were selenium and vitamin E, the gamma tocopherol form. Research since then has identified some risks and doubtful effectiveness associated with these, especially at doses of vitamin E over 200 units a day - primarily because of blood thinning and associated risk of excessive or uncontrolable bleeding, except for people with certain genetic background for selenium. I have not taken either for years. I also took soy estrogen capsules to help with the hot flashes and sweats, and I believe they helped. Later I would adopt other nutritional and supplement tactics.

    I am convinced that diet and nutritional tactics have been important in my fight against prostate cancer.

    Last edited by IADT3since2000; 02-05-2018 at 01:20 PM. Reason: Minor right after posting.

     
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    Old 02-11-2018, 05:35 PM   #22
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Sophisticated imaging - 2000 version: my ProstaScint scan

    Imaging has become so far superior to what was available in 2000, and the advances would benefit me greatly in later years. However, in 2000, the ProstaScint scan at centers of excellence was at the leading edge of the art. It was considered much better than CT scanning for lymph node and other soft tissue search for metastases.

    This morning 18 years ago was a Friday, and I headed to that mid-Atlantic center of excellence for my first session of the ProstaScint scan. The radioactive marker, hooked to the antibody seeker that would attach to PSMA (prostate specific membrane antigen) on any cancer cells, was injected into my left arm. Then a double headed radiation detector on a gantry swung around me as I lay on a table-like platform. This gave the baseline. In a few days I would have the second session in which the process would be repeated.

    At this point we all thought that I had "micro metastases" that were too small to show up on the routinely used CT and bone scans. In fact, we expected many and wide-spread metastases would be detected by the ProstaScint scan.

    Weight: I had now gained two to three pounds, with some around my waist, typical for androgen deprivation therapy (ADT, aka hormonal therapy). I began stepping up aerobic exercise and crunches to try to limit the gain.

    Last edited by IADT3since2000; 02-11-2018 at 05:37 PM. Reason: Minor.

     
    Old 02-15-2018, 02:30 PM   #23
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    Re: To Screen or Not to Screen - 18 years ago tonight

    This morning 18 years ago, February 15, was a Wednesday, and it was my second and final ProstaScint session. The first thing I did upon arriving at the facility building was to buy three very nice ties in the gift shop. It was a great deal, and I've enjoyed wearing the ties ever since.

    But then it was on to business. The first preparation was a shot that marked the blood cells. After that came the intravenous dose of the ProstaScint monoclonal antibody. The technician who inserted the IV injection of the seeker and marker was excellent. That was followed in a short time by a five minute image to check the system.

    Next came the real work: 45 images for the lower abdomen of about 38 seconds each for the "first spin" (rotation of the dual-headed "camera" around my body as I lay on a flat table-like platform). My arms were out, on supports. It wasn't bad; I was relaxed and comfortable.

    The second "spin" was for the upper torso, again 45 images. This time I had to hold my arms above my head. This was awkward and not comfortable; at one point the equipment was passing closer and closer to my head and arms, and I was worrying that the test might fail if it contacted me as I was supposed to remain as still as possible. I was glad when the spin was over.

    The final set was a 10 minute image session of my head, with the screen about an inch from my nose.

    The imaging equipment was a Trionix machine - a passive receiver that picked up radiation as it passed over and around me.

    I remember the technicians checking the results. They could not tell me what the results meant, but they did say the scan had produced images of good quality.

    I have had a number of other scans before and after the ProstaScint, and it was definitely the most tedious and difficult.

    Now the wait for the results . . . . . . . . .

     
    Old 02-21-2018, 11:53 AM   #24
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Worried About Scan Results – This Day 18 Years Ago

    This day 18 years ago, February 21, 2000, was a Monday, and the next day my wife and I would go to get the results of my ProstaScint scan. With all that we had heard and learned, we both expected bad news. We expected to learn that I had numerous small metastases at many widely scattered sites. We had not focused on getting the results since I had the scan done, but now it was time to face the music.

    We were very worried.

     
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    Old 02-22-2018, 12:46 PM   #25
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    Re: To Screen or Not to Screen - 18 years ago tonight

    ProstaScint Imaging Results - 18 years ago, Tuesday February 22, 2000

    My wife and I went to that renowned mid-Atlantic center for my appointment with a radiation oncologist at 10 AM to get the results of the ProstaScint scan. This was our first appointment beyond the urology doctors. At this point we really were not tuned in to the distinctions between urologists, radiation oncologists, and medical oncologists; instead, we kind of lumped them all mentally under the heading of cancer doctors. In the coming weeks and months I would begin to appreciate that there were rather great differences in the perspectives and skill-sets that these different kinds of doctors provided.

    But this morning we were worried. We expected that the ProstaScint scan would have discovered numerous and wide-spread micro-metastases that had been missed by the much less sensitive bone and CT scans I had had. We anticipated that the results would confirm that I did not have long to live – just a handful of years, including some painful and burdensome declining years.

    One doctor took my history. Then Dr. W, the radiation oncologist gave us some amazing and surprising good news: the scan had revealed NO metastatic cancer with the possible exception of a pin-head sized spot on the tip of the liver – an unlikely spot for an early metastasis that was possibly a testing artifact!!! The spot was in an area of the body that was hard for the radiologist to interpret, it was very small, and the scan had a 20% error rate – both false positives and negatives, but my impression from the doctor was that there were more false positives (in other words, the scan suggests cancer when there really is no cancer).

    Wow! Amazing! Surprising! Wonderful! Awesome!!!!!
    This was one of the times when you are going down a dark and difficult, frightening, courage-robbing and dismal path with ever-shrinking expectations but suddenly you are in bright sun, the sky is beautiful, the air is fresh, there’s music in the air and life looks good again! My wife and I knew my situation was still challenging, but at the moment, all we could feel was optimism and joy!

    Dr. W then gave us more good news, but it took a while for the impact to sink in as he presented all the information and some options. In his opinion the possible metastatic spot was so small that he believed Lupron® plus another drug (Casodex®/bicalutamide) might eliminate it. He explained that androgen deprivation therapy (for me Lupron® plus Casodex®) was very unlikely to take care of a large tumor but might handle a small spot. Or some natural defenses with the right foods and supplements might do it.

    Dr. W gave me a prescription for Casodex®, explaining in simple terms that it would block some of the androgen fuel that the Lupron® did not suppress. This also would set the stage for radiation by shrinking the prostate. He indicated the chance for a cure with radiation in my situation was small, but that he would be willing to give me radiation if I wanted it. We would think it over.

    My wife and I were delighted with Dr. W’s good report and his optimism. We went to Baltimore’s Inner Harbor to have lunch, starting with delicious crab soups, moving on to equally delicious crab cakes, and finishing with shared cheesecake. The food was excellent. We went on to visit the Baltimore Aquarium and the Navy ship Constellation, all close together, enjoying both of them.

    Whatever the future would bring, this was a great day for us! Life was good!

     
    Old 02-24-2018, 05:00 PM   #26
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Eighteen years ago today was a Thursday, and I went to my local urologists to get another one month Lupron shot - my third.

    The doctor reviewed the ProstaScint report and earlier notes from the urologist who ordered it, saying it was quite encouraging. He concurred with the radiation oncologist's recommendation for external beam radiation supported by Lupron® and Casodex®, and he strongly concurred that I was not a candidate for surgery.

    I was not looking forward to the sore butt I would have for the next few days. It wasn't uncomfortable while sitting, but it bothered me while sleeping. (Within a year different doctors were giving me the shot higher up in the butt muscle, and that helped a lot! )

     
    Old 02-25-2018, 03:22 AM   #27
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Quote:
    Originally Posted by IADT3since2000 View Post
    Eighteen years ago today was a Thursday, and I went to my local urologists to get another one month Lupron shot - my third.

    The doctor reviewed the ProstaScint report and earlier notes from the urologist who ordered it, saying it was quite encouraging. He concurred with the radiation oncologist's recommendation for external beam radiation supported by Lupron® and Casodex®, and he strongly concurred that I was not a candidate for surgery.

    I was not looking forward to the sore butt I would have for the next few days. It wasn't uncomfortable while sitting, but it bothered me while sleeping. (Within a year different doctors were giving me the shot higher up in the butt muscle, and that helped a lot! )
    Hello Jim, Sure seems like you and your doctors chose the best treatment method, but curious as to why they decided against surgery. I'm sure my case was different than yours, or it was just the surgeons choice. He recommended surgery first. His explanation was if you go with radiation as your first treatment choice, and the cancer returns, surgery is no longer an option. And with the surgery first, radiation would be an additional treatment if needed. As always, thank you for taking the time to answer my many questions, Be Well, Pat

     
    Old 02-25-2018, 12:02 PM   #28
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Hi again Pat,

    The main reason was that the facts of my case indicated a high likelihood that the cancer had spread beyond the range of surgery, based on many research studies, and it was also back in 2000, when a lot less was known than now. Some of the key facts were that my PSA was so high; my prostate was packed full of cancer; I had a fair amount of Gleason grade 4 cancer contributing to that overall Gleason 4+3=7; and DRE evidence suggested the cancer was already outside the capsule and into the seminal vesicles. Each of these alone suggested that the chance for cure with surgery was low, and the combination basically ruled out surgery.

    Back then they thought that surgery as “primary therapy” to the prostate when there was a strong likelihood of metastasis would do no good and just saddle me with the side effects of prostatectomy. That view is now changing, as some leading experts are convinced that wiping out cancer in the prostate, mainly by radiation or surgery, will give the patient a better overall chance even if there is metastatic spread beyond the prostate. This strategy, as you may know, is known as "debulking". These days, radiation has an edge in being better able to eliminate cancer in the prostate and the pelvic area, therefore appealing more to me as a strategy for debulking and even taking a shot at a cure. However, considerations like which set of possible and likely side effects and long term burden is more appealing to a patient will probably heavily influence the choice for most of us if the options are close to equivalent in controlling the cancer based on the characteristics of our own case.

    Two decades ago radiation technology was not well enough advanced to safely and reliably deliver a dose of radiation that would wipe out cancer in the prostate, especially where the disease was bulky; that was true of both external beam and seeds radiation. They were good enough for some patients, but not for others, and surgery was generally the better choice. Now radiation appears at least as good as surgery in many cases, though surgery is also a worthy option.

    The explanation your surgeon gave you is obsolete in view of improved radiation and imaging technology, but it is still often preached by surgeons, as in your case. (Two decades ago radiation doctors were overselling radiation, but now they have a much improved “product.” Research has proven that most urologists (surgeons) strongly favor surgery, while most radiation oncologists strongly favor radiation. It’s kind of like the Ford salesman who is not in business to recommend a Chevy to you, and vice versa.) Also, there are salvage options after radiation, actually including surgery, though the experts I’ve heard strongly emphasize finding an expert salvage surgeon if that’s what the patient wants.

    The contrasting position – the one I believe in - is to go with your best option first, as that is likely to spare you the extra side effects and burden that come with a second therapy that won’t be needed if your best option has wiped out the cancer. As noted above, these days radiation is at least as capable as surgery of wiping out cancer in (and around) the prostate. Unfortunately, while salvage surgery or radiation can cure cancer after the primary treatment has failed, the rate of success is not as high as we would like. There are also some other emerging salvage options.

    I hope this helps.

     
    Old 02-26-2018, 11:16 AM   #29
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Yes, it does. As always, very informative. Thank you Jim

    Last edited by Administrator; 02-26-2018 at 11:24 AM.

     
    Old 02-27-2018, 10:23 PM   #30
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Congratulations, such a relief to be cured!

     
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