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To Screen or Not to Screen - 18 years ago tonight


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Old 12-04-2017, 07:52 PM   #1
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To Screen or Not to Screen - 18 years ago tonight

I feel good tonight - pretty sure I don't have prostate cancer. Cured. Hopefully.

On this night, December 4, 18 years ago, I felt good and at peace with the world. It was a Saturday night, and I had finally had an overdue physical exam in the morning. All had gone well. When the doctor did not suggest a PSA test, I said something like shouldn't I get one? He replied that he did not think I needed it. I was 56 at the time, and my father had died from prostate cancer, so I said I would really like to do it just to be on the safe side. He reluctantly said he would order it if I wanted it. Within the hour I had the blood taken at another facility.

That first ever PSA test was the beginning of the story.

I wonder how many of us have similar beginnings of our prostate cancer stories.

 
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Old 12-05-2017, 07:41 AM   #2
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Re: To Screen or Not to Screen - 18 years ago tonight

"18 Years" Congratulations Jim, All the best for continuing good health and appreciation for all the help you provide here on Healthboards

 
Old 12-07-2017, 02:28 PM   #3
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Re: To Screen or Not to Screen - 18 years ago tonight

As darkness is closing in on December 7, 2017, I'm thinking back 18 years exactly, about this same time, when I had finished getting an allergy shot, and the primary care doctor, who had advised me that a PSA was unnecessary on the previous Saturday, motioned me to his office. I had an odd feeling as none of the staff, whom I knew well, looked their normal cheerful selves.

He suggested I sit down, with his desk between us, and slid a sheet of paper to me, saying this is your PSA result, with no further words. I had steeled myself for a possible result as high as 10, which I then thought was the maximum PSA score. I could not find the score, just something I initially took to be a serial number of some sort, 113.6. A few seconds later I realized that WAS my PSA number! My first shocked response was: it can't be as bad as it looks because I feel fine, and I'm still breathing. I then noticed the pathologist's scrawled note on the lower half of the report: Get appt ASAP!

The doctor then lined up an appointment with a urologist for the first thing in the morning.

My next job was breaking the news to my wife that I almost certainly had prostate cancer, and it looked bad. That was a low point!

PS: thanks for your congratulations. We will celebrate tonight!

Last edited by IADT3since2000; 12-07-2017 at 02:32 PM. Reason: Minor additions right after posting.

 
Old 12-08-2017, 05:04 AM   #4
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Re: To Screen or Not to Screen - 18 years ago tonight

This morning, December 8, 1999, 18 years ago, at this time my wife and I were in the waiting room of a urologist we did not know. He was squeezing us in before other appointments.

He took my history and gave me my first DRE, pronouncing my prostate "rock hard." We knew that wasn't good. We were desperate to hear other explanations for that high PSA and hard prostate, and he said it possibly could be due to calcification or other causes, but he thought I was likely free of infection, that the prostate was only mildly enlarged so that BPH would not explain the PSA (which was too high anyway for BPH) and that I did have serious prostate cancer. He scheduled a biopsy for a few days later on December 13.

Out of my hearing he said to my wife that if I only had come to him earlier he might have been able to help me. Naturally she was upset by that but did not immediately share it with me. It is one of the causes for my seeking other medical advice within the next month, but for the moment this was the doctor I was counting on to try to save my life; at the moment I was bonding to him strongly. He did not give me an overview of the disease or talk about possible options, other than mentioning that surgery might be helpful. He mentioned that I needed bone and CT scans but said that they could wait until after he and we came back from vacations. I don't recall that he mentioned hormonal therapy as a possible approach.

That afternoon I left for a previously scheduled business trip to the New Orleans area. It was good to be able to focus on something other than the terrifying prospect that had surfaced the previous late afternoon. I recall that I told my boss why I would be late for work, but we asked him to keep it quiet, and we told no one else. We clung to hope that something else would explain away the medical evidence.

It was strange that life was going on so normally at one level while our whole anticipated future had just been uprooted and violently shaken. :confused

 
Old 12-14-2017, 07:57 PM   #5
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Re: To Screen or Not to Screen - 18 years ago tonight

This afternoon, 18 years ago, I got a phone call at work that the biopsy, two days earlier, was positive for prostate cancer. My wife and I had expected that, but now we had to face a frightening reality. He also said my Gleason score was 7 and that the cancer was on both sides. My wife and I were feeling a lot of stress.

It had become time to think about who, how, and when we should notify our family and others.

[Actually I was a day ahead in my mental calendar. This happened on December 15, not the 14th.]

In the evening we phoned our two adult sons about my situation. I had already informed people at work who needed to know.

The doctor briefly discussed what to do next. He had previously mentioned starting Lupron and having me get bone and CT scans before he started his overseas vacation, but he changed his plan and said we could wait for that until he returned in early January. Not knowing any better, and with a Christmas vacation on the other coast coming up, we agreed.

Last edited by IADT3since2000; 12-15-2017 at 02:40 PM. Reason: One minor correction, plus other substantial detail added.

 
Old 12-16-2017, 07:32 PM   #6
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Re: To Screen or Not to Screen - 18 years ago tonight

Eighteen years ago, December 16, a Thursday, one day after getting my biopsy results, I slip on the last two stairs as I come down for breakfast and jam my shoulder as I break my fall, the same shoulder I had injured several months earlier in an athletic event. I never had slipped on stairs in my life before that, and never have since. It had to be a result of stress. It hurt, and I would be aware of the soreness for some time to come.

At work we took off at noon for our office Christmas party. the food was good and it was enjoyable, taking my mind away from cancer for a couple of hours.

Later in the day I was beginning to think about second opinions. I would be in the LA area on vacation over Christmas, and I sent my data there to a hospital well known for treating cancer. Just doing that boosted my hope. My wife and I were eager and anxious to see if one of their prostate cancer specialists would be able to see me.

I also got a call from my sister's father-in-law who had just retired as a urologist. He was helpful, but he urged me to get a Lupron shot quickly, and that would require changing the course that my urologist had set. I was beginning to feel like I was being pulled in opposite directions with little idea what was best.

Last edited by IADT3since2000; 12-16-2017 at 07:36 PM.

 
Old 12-18-2017, 07:42 PM   #7
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Re: To Screen or Not to Screen - 18 years ago tonight

Last evening, 18 years ago, my father-in-law, who had been dealing with his own case of prostate cancer, which was metastatic, for some years, was upset that I had not yet had a Lupron shot. After mulling over my situation and advice I had received, I decided in the morning, Saturday, to contact my urologist's office and find one of his associates to give me the Lupron shot, and maybe do some imaging. The doctor's staff seemed to be giving me the run around, almost as if they had been directed to do nothing for me until his return. Nevertheless, I was able to get a good lead from hospital staff to a highly regarded doctor who sometimes worked with my urologist. His office booked me for an appointment Monday morning, and he explained that normally bone and CT scans would be done first, but that the scans could be done very shortly after the shot with no loss of sensitivity.

I felt great and energetic all day after making this progress. My father-in-law was glad to hear about it.

 
Old 12-20-2017, 05:01 PM   #8
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Re: To Screen or Not to Screen - 18 years ago tonight

Eighteen years ago today was a Monday. I went to work for a couple of hours, then drove downtown Washington, DC, to see about getting the Lupron shot. The doctor looked at my records, did a DRE, and questioned me thoroughly about any back pain I might have had. I reassured him that my back was fine. I later realized he was considering whether to give me the Lupron shot without prior medication to prevent flare - the sudden, short increase in PSA due to the short increase in testosterone prior to the sharp decline that happens with Lupron. Flare carries a risk of paralysis if there are established spinal metastases; with his experience and exam, the doctor likely concluded that risk was minimal. The doctor probably weighed the clear value of getting Lupron in my situation versus the likelihood that I would be going one to two more weeks without Lupron if he did not give it that day.

He did give me the shot and sent me on for CT and bone scans in the afternoon. That was one busy, tiring day, but I was glad to take my first steps at countering the cancer.

 
Old 12-21-2017, 07:37 PM   #9
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Re: To Screen or Not to Screen - 18 years ago tonight

Eighteen years ago today fell on Tuesday.

It had been two weeks since my fateful PSA result of 113.6. It had been 13 days since my first ever exam by a urologist. It had been 8 days since my biopsy. It had been 6 days since learning my biopsy results. It had been 1 day since having my CT and bone scans and getting my first Lupron shot. It was 1 day before my wife and I were to fly across the country to visit our older son in California. It was, for a time, one of the worst days of my life.

The day started decently enough, though my butt had been sore from the Lupron shot, waking me several times through the night. Maybe the guck I had to consume for the scans did not help induce sleep either. This day I was working hard to produce a complex document that would be read by contractors throughout the country who were interested in a highly sophisticated R&D program. Only I knew the full set of information needed for the document, and it was critical that it be out before Christmas, which for me meant by the end of the day as I would be leaving on vacation the next day. I had lost time during the previous two weeks in coming to grips with having serious cancer, which had put me behind schedule, but the day initially went well. My wife was counting on me to wrap up early so I could help with packing and other pre-vacation chores.

By mid-afternoon it was clear that things were not going well. For starters, I realized I was coming down with a cold, no doubt due to all the recent stress. My shoulder also hurt from that slip on the stairs. But the worst thing was that our computer system was acting up - not unexpected, but really frustrating as I was trying to meet my deadline and leave.

Leaving early didn't happen. Then my normal departure time came and went. About an hour later than normal, I finally had the document ready, and I transmitted it. That's when our computer system decided it was time to crash, wiping out hours of my work.

That was the low point! I was completely at a loss for what to do. Not only was the work gone, but I was quite aware that it would be harder to complete travel preparations, and I was feeling sicker and less capable by the hour. For perhaps a half hour I tried to see if my document was recoverable, but without success. I really didn't have a clue what to do next.

It was then that a coworker came to my aid - someone I had helped out on a number of occasions in years past. She was an expert with computers, and she said that she would be able to recover the document in the morning, and that she would get it published. I was amazed and felt a wave of relief roll over me. She told me to go home and enjoy my vacation. I locked my desk and left.

My wife and I had to work far into the night instead of getting a good night's sleep, but we did finally got everything prepared, we made it to the airport on time, and we both were able to relax as the plane took off.

This may have been the first time that I was aware that we cancer patients often encounter great kindness as we try to cope with our fates.

 
Old 12-23-2017, 08:22 AM   #10
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Re: To Screen or Not to Screen - 18 years ago tonight

IADT,

Merry Christmas ! And congratulations again for your long hard-fought and well-earned success in achieving cure. Your co-worker's act of kindness in the time of despair and desperation provided you with the needed help and inspiration just like myself in my own current situation. Your responses to my posts have helped me in my time of need and brightened my vision of my dreaded G8 PCa disease. Similar to your experiences, all throughout my life, I have encountered various doctors that I felt did not provide the right advice or recommendations. As a result, I ended up paying for the consequences. In this fight against PCa, one wrong decision will most likely have very bad consequences.

In the last post, I asked about the AXIUM scan, and your advice turned out to be spot-on. My AXIUM scan is clean. And my PSA on 12/13/17, four (4) weeks after the start of Triple Hormone Blockade (THB) with 1 x Casodex and two (2) weeks after my first Lupron shot was 0.34, a 93.4% drop from my BPSA of 5.2. My Oncologist and Urologist think that this is really good progress and scheduled me for Proton Therapy starting first week of January next year.

Despite these positive developments, my doubts linger. During my last visit with my Radiation Oncologist about two (2) weeks ago. I asked for the AXIUM scan in order to obtain a more accurate picture of potential metastasis. He countered by saying that my chance of having metastasis is negligible, an AXIUM scan will only provide at most a marginal return. He then proceeded to prove his statement by pulling up the Sloan Kettering cancer center Prediction Tool / Prostate Nomograms page and typed in my profile and PCa staging information, The numbers that came out surprised him: Organ-Confined Disease 21.2%, Extracapsular Extension 75%, Lymph Node Involvement 28.3%, Seminal Vesicle Invasion 30%. These numbers are far from being negligible! So he immediately ordered the scan. At this point, my question is that with these numbers, there is a good chance of microscopic metastasis with Lymph and Seminal Vesicle involvements. Then, how can Proton Therapy be the optimal treatment for me ? Wouldn't IMRT be the right choice ?

I hope you can shed my light on this situation as you always do. Thanks in advance. And again, Merry Christmas.

 
Old 12-27-2017, 04:26 PM   #11
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Re: To Screen or Not to Screen - 18 years ago tonight

Hi again lcchan0001,

Thanks for sharing your doctor's surprise after checking the statistics, and his willingness to change his view immediately.

Even though the Axium scan (actually Axumin) was negative, in my layman's view, not founded on expert opinion I have heard, it makes me think that you do not have much if any prostate cancer that is NOT sensitive to androgen sources as fuel, especially testosterone and DHT. That's a good thing! Hormonal blockade should knock the cancer way down and make it easier for the radiation to do its good work.

Well-done, modern IMRT/IGRT is so good at killing the cancer and keeping the risk of side-effects very low that there isn't much room for proton beam to do better. That said, the jury is still out, and a relevant clinical trial will not produce results for a number of years - long after you need to know.

It seems there are three strategy choices open to you. One would be straight proton beam, but that would probably not be much good at killing any micro cancer outside the prostate in unknown locations in the pelvis. Another would be a combination of proton for the prostate itself, plus IMRT for the pelvic region; my understanding is that this approach is often used in situations like yours where there is a desire for proton therapy. The third approach is to use IMRT/IGRT for the whole job, which is what I did: 78 Gy for the prostate, plus a 46 Gy pelvic treatment. Of course, for cases like yours, a long course of hormonal blockade is also used in support.

My layman's general view is that a pelvic dose with IMRT is important for patients with challenging cases like yours, but the prostate itself could probably be treated by either IMRT/IGRT or proton.

I hope this helps.

Last edited by IADT3since2000; 01-13-2018 at 09:35 AM. Reason: Minor editing right after posting, and noted that Axium was actually Axumin.

 
Old 12-27-2017, 04:56 PM   #12
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Re: To Screen or Not to Screen - 18 years ago tonight

Eighteen years ago today was a Monday, and I felt grateful to be able to consult with a urologist who specialized in prostate cancer at one of the Los Angeles area's premier centers of hope for cancer patients. I had my scans with me, and I also had been studying a booklet prepared for me by the American Cancer Society; it was my first real orientation to the disease.

The doctor was most kind and compassionate during a two hour consultation with me - my first thorough explanation of what was happening and treatment choices, and my wife and older son shared the latter time with him after the exam. He gave me another PSA on the spot, and I had the feeling he did not completely trust my initial PSA - it was so much higher than results he saw commonly in 1999. While concurring that I likely had no infection that would explain most of the high PSA, he thought that prostate "infarction", basically blockage that causes death of prostate cells, might be responsible. He explained that a large drop in PSA after a week on Lupron (shot given on 12/20, and this day's PSA on 12/27), say down to about 40 after the initial result in the hundred and teens, would be evidence for a large contribution from infarction, and that would suggest that the cancer might still be contained in the prostate.

He also was surprised I had not been given some kind of drug to prevent Lupron flare; I got the feeling he was wondering what the heck kind of medicine they were practicing on the East Coast.

For the first time I got a prognosis: five years, including three good years and two declining years. While that no doubt would sound awful to most of us, it actually was encouraging to me and my wife and son. We all were fearful I would have a lot less time. He cushioned that relatively short prognosis with the hopeful reality that advances were being made every year, and he estimated that I had a 20% chance of cure. He also assured me that the combination of a negative bone scan, a negative CT scan, and no symptoms was encouraging. He gave us some leads and advice for finding a good doctor to treat me on the East Coast.

We all felt better as we left his hospital. I was really eager to get the result of the day's PSA test.

 
Old 01-03-2018, 02:41 PM   #13
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Re: To Screen or Not to Screen - 18 years ago tonight

PSA?

Eighteen years ago, January 3, 2000, fell on a Monday. This was the sixth day since my PSA test, and I thought the hospital in the Los Angeles area had probably recorded my PSA result from the December 27 test by now. I gave them a call and was disappointed to hear that the result was not in yet. I figured the New Year's holiday had probably slowed things up. My wife and I were eager to see if my PSA would fall to around 40 from 113.6 - the hopeful possibility the doctor in the Los Angeles area had described to us.

I realized that the sensation I had had a couple of days before was a hot flash from the Lupron shot. The flashes had continued and were now unmistakable.

On this day I spent several hours organizing my prostate cancer articles, notes and records, and I made an appointment with a well-known local doctor I had consulted to see what he advised on possibly finding a different doctor to guide my care. I would see him the next morning.

Last edited by IADT3since2000; 01-03-2018 at 02:42 PM. Reason: Corrected omission seen right after posting.

 
Old 01-05-2018, 10:10 AM   #14
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Re: To Screen or Not to Screen - 18 years ago tonight

Eighteen years ago yesterday, January 4, 2000, fell on a Tuesday. This was the seventh day since my PSA test at the Los Angeles area hospital, and I still did not have my result that would be key in determining whether that initial PSA of 113.6 was a flawed result or a result partly influenced by non-cancer, such as the infarction mentioned by the LA area doctor, both of which could mean less aggressive cancer.

In the morning I consulted the well-known fairly local doctor - who also delivered a nightly radio program, with the goal of finding a good doctor or team in the Washington, DC area to guide my care. He and his nurse saw me for about a half hour and were thorough from what was essentially a primary care perspective, though he was a specialist in a condition other than cancer.

He strongly recommended I go to a renowned East Coast institution in the area that was especially known for pioneering work in prostate cancer surgery. As he put it, "They wrote the book on prostate cancer." While he thought surgery would probably be recommended, he himself had been impressed by early research with radioactive seeds - brachytherapy; however, he stressed that he was not expert in prostate cancer and that I should get a recommendation from the experts. The same institution had been on the list recommended by the doctor in LA.

What he said made sense, and I placed a call from a pay phone (how technology has changed in 18 years) to my wife shortly after leaving his office. I told her what the doctor had said, and we agreed I should make an appointment for a surgery consultation at the recommended institution right away.

The next call I made was to the urology unit of that institution, requesting that surgery consult. The nurse to whom I spoke brusquely asked me for my Gleason score (4+3=7), stage (2 at that time, later determined to be 3), and PSA (113.6). I might have also said I had been on Lupron for about two weeks. She said she would check with the doctors and put me on hold, but was back within a minute, stating emphatically: "You're not a surgery candidate!"

In that moment the threads of optimism that had begun to grow were torn apart. Instantly I felt adrift, abandoned, and depressed. I heard her mention that they referred patients like me to a certain doctor on their staff, who would perform further assessment. For reference, I'll call him Dr. S.

I called my wife, who was also disappointed and upset, of course. We decided I should call the doctor whose office I had just left and check if he knew about Dr. S. Fortunately he got on the line right away, and he said he knew Dr. S and that he had managed his referrals well. I felt a little better and relayed that information to my wife.

My next call was to Dr. S's office, and I made an appointment for January 11. Having a course of action before me helped, but not a whole lot. Having surgery ruled out, and having it ruled out so bluntly - drill sergeant fashion - was crushing. I went on to my place of work, and getting into the work routine helped take my mind off the wreckage of the future I had been counting on earlier in the morning.

On the positive side of the rest of life, I realized my months long shoulder injury was clearly improving. But my wife and I would feel really low for the coming days. It was almost like we needed to prepare a funeral for ourselves; indeed, that was pretty much the reality for the future we had confidently and serenly envisioned up to only a month earlier.

 
Old 01-08-2018, 06:54 PM   #15
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Re: To Screen or Not to Screen - 18 years ago tonight

Eighteen years ago today fell on a Saturday, and it was on that day or the day before that I called the Los Angeles hospital for my PSA score as they had not called me. I didn't want to have my score misplaced due to an administrative mistake.

What the staff told me was frustrating: their lab machine was broken and my PSA result would take a little longer. Ugh! Not what i wanted to hear!

 
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