After reaching .03, I looked for 2 consecutive rises. That happened, so at .044, I made an appt with Dr. Eric Horwitz at Fox Chase outside Philly. The .055 was recorded last month a week prior to my meeting.
Had a very nice and long discussion with Dr. Horwitz, about 20 mins. I was ready with tons of questions, but the gist of it was this. ADT of 7 months was my choice. He cited a study that .34 was the threshold for ADT benefit for cases similar to my own. He was OK either way. If I wanted it, then do a one month shot to see how I tolerate it. Then 34 sessions bed and area (nodes). My SRT journey is slated to begin Aug 23, with imaging and casting. I assume my first ADT (HT) shot, too. I am assuming RT to begin sometime in Sept.
I have concerns. Here I am sitting at roughly .06 and wondering if I do anything. Sure, studies show a BCR free time benefit if starting SRT earlier, than say, at .2 or over. But, with my slow rise, I may not reach .2, .3, or .4 for years. That's years WITHOUT any treatment. So, if I start later, sure the time benefit is reduced, but I also go without any potential SE until that time. Then hit it and knock it back down for a while at that time. I say this because I don't think a "cure" is really on the table. I think anything for me just kicks the can down the road awhile. What do you guys think?
Dr. Horwitz thinks I have a good chance of the recurrance being in the prostate bed, for several reasons. They are no initial lymph node involvement and no initial seminal vesicle involvement. The positive margins and EPE, initial 18 month undetect, and most important is the slow rise of the uPSA, have him thinking it is a local recurrance.
I asked for the ADT (HT), as he gave me a choice. Any guys out there that did do the ADT (HT) route for SRT at lower uPSA's? What does the HT actually do in conjunction with the SRT?
I already reached out to Tall Allen for his thoughts, but wold really appreciate some feedback from yo guys too.
Hang tough, bothers!
Jay
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JayMot
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I would trust Tall_Allen's judgment on this more than my own but, without having seen what he said, here are my thoughts on the issues - for whatever they're worth.
I'm assuming that you're young enough that, even with a slow start, the cancer might develop to a dangerous stage. If you're 80 or maybe even 70 years old, or have a heart condition, or for some other reason believe that you are likely to die of something else before the cancer kills you, that's a different story.
On the plus side of getting treatment now:
1. It would seem that there is a chance of a cure. Dr. Horowitz, who works for a top flight institution and has treated other men in your situation, seems to think so and I respect his opinion. It is my understanding that the changes in tumor cells that enable them to metastasize to what are incompatible places in the body for healthy prostate cells indicate a higher amount of mutations in the tumors and a potentially more rapidly developing disease. Your slow growth of PSA seems more compatible with a non-metastatic local disease that could be cured by radiation.
2. Logically, the chances of a cure would be better now than later. The more time the cancer has to mutate and metastasize, the more likely mutation and metastasis is. If you think you're going to need this eventually, there is an advantage to doing it now when it has the best chance of complete success.
3. Your very slow PSA/cancer growth could change suddenly and without warning. I've seen this happen to others. You go in for a three month PSA test and find that the PSA has doubled and is likely metastatic.
On the minus side of getting treatment now:
1. I'm skeptical of this happening in a Gleason 4+3 cancer with 80% G4, but it's possible that the PSA will never be problematic in your lifetime.
2. Treatments get better over time. Although I wouldn't bet on it, it's conceivable that, before you've experienced any symptoms, there could be a low side effect pill that cures, or at least durably halts the growth of, prostate cancer and eliminates the need for other treatment.
3. Radiation can damage other tissue near the radiation target, possibly causing new cancers down the road. Factors involved in this issue include the number of years you will live after radiation, and the knowledge, skill, and effort of the radiation oncologist and his staff.
4. The radiation treatment may fail, leaving you in the same shape as before regarding the cancer, but with possible additional adverse effects from the radiation. These effects can include declining sexual potency (if you have any after your prostatectomy), and possible scarring or other damage to the rectum or other tissues outside the prostate. There may also be short term effects like radiation skin burn (like sunburn), aggravation of hemorrhoids, and difficulty urinating for some months due to inflammation of tissue around the urethra (less likely I suspect if you've already had a prostatectomy.)
I think that in your shoes I would choose radiation.
As to your question concerning ADT, it is my understanding that the ADT weakens the tumor cells, making it more likely that they will be killed by the radiation. I have also read speculation that it helps to kill circulating tumor cells that might, conceivably, become metastatic. When I was treated with HDR brachytherapy for a Gleason 4+3 cancer with PSA above 10, I read a study that said that six months of ADT would raise the chance of a cure for men like me from 63% to 87%, so I got the ADT. The docs discovered elevated liver enzymes indicating possible liver damage from the Lupron, so they stopped the treatment after one 1 month and one 3 months injection. You might ask Dr. Horowitz about this and about getting liver tests before the first and second injections.
I didn't like ADT. I haven't met anyone who did. So if Dr. Horowitz thinks you get no benefit until you reach a PSA of .34, that sounds like a good reason to avoid it. I do have to admit however that it's an interesting experience.
Thank you so much for your extended response. I know what I have to do, it's just the doubts that creep into one's own mind when facing such potential life changing decisions. I beleive in science (studies), but again, the mind plays cruel jokes on us from time to time. I have convinced myself that I am not a candidate for this last shot cure, even though science has indicated that I have more than a 50/50 shot. IF you hold a 60/40 advantage in Vegas, you are considered a "winner". So, I need to convince myself that there should be no reason to beleive that I cannot be a "winner" of this fight. I think once things start next week with imaging, casting, etc. (Aug 23), things will settle down a bit for me.
These kinds of decisions always involve playing percentages and the outcomes can go either way. The anxiety they cause can be overwhelming.
One thing I think I can confidently tell you is that the anxiety will continue whichever course you take. If you decide on radiation you'll beat yourself up about whether it was really necessary, and if you forego radiation you'll be beating yourself up about missing your best chance. There's no escape from the anxiety in this choice. The only escape is to tell yourself that, whatever you did, it was for a justifiable reason at the time and in the future the decision will be water under the bridge, no longer worth thinking about.
I do think that radiation offers a chance at the biggest win. It's only a chance, nowhere near a certainty, but there is a chance that it will work and you'll never have to worry about dying of prostate cancer. The other route doesn't offer that, at least not with currently available treatments. For years, you'll still be anxious before every PSA test, but there's a chance that each of those tests will come out at or near undetectable.
JayMot, has genomic testing figured into the decision to use ADT? I had RP mid-Dec. 2018 and am monitoring PSA, which has fortunately been below the limit of detection (<0.014) so far. The urologist-prostate cancer specialist managing my case proposes that if PSA begins to increase, he will send samples for genetic testing to help judge the probability that ADT would be beneficial along with SRT, versus SRT without ADT. Of course, if I eventually do face that decision, I suppose I might choose to have ADT regardless, as an abundance of caution, despite its additional side effects.
I don't know which type of genomic testing would be best for information regarding effectiveness of ADT with SRT, but based on the information at the link below, I suspect that currently Prolaris might be better suited, based on the information at the URL below:
Yes, I did have genomic testing and two of the "scoring" factors (among many) were "ADT Response" and "RT Response". My ADT Response was graded as Average, but my RT Response was graded as Low. My RO at Fox Chase in Philly does not put much stock in these "scores". Crossing my fingers as I head into this. J
There's another tool that may (or may not) be relevant to your decision. I've seen it before but forgot about it when I posted my other messages. The tool calculates the "Risk of Dying of Prostate Cancer in Men With a Rising PSA After Radical Prostatectomy". See: mskcc.org/nomograms/prostat...
I don't know all of the values to enter into the calculator, so you'll have to do that part yourself. I don't know what it will say or how valuable it's prognostication will be.
Alan, thanks for the link, BUT......I've been a slave to all the nonograms out there, from MSKCC, FCC, Cleveland Clinic, JH, UCSF.......etc. I know them well. lol They all project fairly well for me, even without treatment. But, as you know, even if one comes back at a 90% for a positive result, some one has to land in the 10% side. I have the odds with me for a durable remission after SRT/ADT, however, I could land on the "wrong" side. Only time will tell. J
I have a cousin who is an oncologist. He told me that half his patients don't want to know anything. They say, "Doc, do whatever you have to do. I don't want to know what it is."
Sometimes after I've obsessed for a while I think, Yeah, I don't want to know. Then I sober up and get real - this is my problem and I have to deal with it the best way I can. I start obsessing again.
It is a difficult decision with a PSA-only recurrence. Doctors attempt to delay the onset of metastatic disease and death but avoid over-treating a disease that may never affect survival or QoL.
Salvage RT is proven to be effective in patients with a short PSA-DT. A “wait and see” strategy could be a valid option with a PSA-DT of more than twelve months and other favourable factors such a time to BCR > three year, clear nodes and seminal vesicles.
Gemlin_, Yes, I'm taking the plunge into SRT/ADT beginning next week Aug 23. I just feel at my age, 57, that I have a good shot to knock this down for a while, maybe forever. J
Hi I'm similar at 0.05 after RP 4+ years ago and 2.5 years undetectable <0.03. I currently plan to reassess if I get to 0.1. What advice did Tall Allen give .... was it to wait to 0.2? I have read that if you get to 0.1 you are very likely to go to 0.2. Good luck.
julianc, I'll let Tall Allen answer himself. But, our conversation centered on the likelihood that I do have a recurrence and that studies have show treating it early, after a clear trend is established above .03, is the way to go. My RO agrees, so I'm taking the SRT plunge later this week. J
A very difficult decision and one I faced myself. Data suggests that “blind” radiation does benefit a substantial number of people in this position. I hated the idea of blind radiation but there is danger if you are young in letting PSA grow to the extent it can be detected on a Gallium scan. I therefore went for blind radiation and pushed for 6 months ADT because data suggests a synergistic benefit. I could not persuade my oncologist to do the nodes. 18 months post radiation I have biochemical reoccurrence with a PSA of 0.03. I am gutted but my view was I needed to give myself the best chance of cure. I found the impact of ADT worse than RT. I went on ADT and did SRT at 0.06. Good luck to you. Difficult decision.
Greenstreet, I met today with the RO and specifically asked about the nodes in the prostate bed area and he told me he IS doing the nodes. So, I am hoping to win this "whack-a-mole" game. I am doing the ADT and am more scared of that right now. I'll report back on my progress. J
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post PSA persistent PSA
Salvage radiation prep 
Post Radical Prostatectomy on 5/9/17
