Waddya make if these PSA readings? Surgery was 23 years ago. I'm inclined to just let it ride at this pace. Radiation scares the bejeezus out of me, as does ADT. After all this time, maybe just watching might be best?
2/9/18. 0.38
5/25/18 0.43
8/23/18 0.27. ???
11/30/18. 0.41
3/19/19. 0.44
Surgery was in 1996. PSA became detectable in 2005, but now seems to be more active. Oncologist does not seem worried, won't order scans, but i am wondering. Hold pat?
Thanks for any input!
Cancer2x
Cancer2x,
23 years? I'm at 15 & doubtful about 20, & here you are - treated in the last century!
Who knows what that 8/18 PSA means, but you have 3 readings between 0.41 & 0.44. The PSA isn't moving ominously.
I'd keep monitoring but otherwise not be concerned.
Best, -Patrick
Your PSA is stable around 0.4 (round the numbers), in consequence there is not PSADT (the PSA was 0.4 on 2/9/18 and 0.4 on 3/19/19). You should wait for a consistent progression of the PSA before doing anything.
How old? Any comorbidities? What was your pathology Gleason score?
Oh...I am a young 72. (How the hell did I ever get this old?) Golf, fish, bowl, Skydive, camp, cook....I need more hobbies!
Comorbidities means other illnesses/conditions like diabetes or cardiovascular disease. You would have to look up your Gleason score from your post-surgery pathology report.
TA -
Post-op PSA was 12.0
Have T2 Diabetes -Insulin plus a handful of pills daily.
What was your post-op Gleason score?
Post- Gleason Score was 3+4=7
So here are things to consider:
• If your life expectancy due to the diabetes is <15 years, the PC probably won't kill you first
• The median life expectancy of men who are recurrent and have no therapy (other than palliative ADT) is about 15 years. But that is a median - half the men do worse, half better, and some may die of something else eventually.
• If you can have curative salvage radiation, you won't need ADT with it if you have it now, but you will need ADT with it if you wait until your PSA goes up
• Side effects of salvage radiation are worse as we age
• If you have only cancer that is pattern 3 growing in your prostate bed, it may never metastasize. If it is pattern 4, it will eventually metastasize.
• If you wait, it may be about 10 years (median) until the first metastasis is detectable
• Radiation and ADT are a lot less scary than jumping out of a plane.
Alan, I am asking the same question of you and Alan Meyer since I don't know how to copy two people in one reply. I assume you are referring to prostate bed radiation when you use the term "curative salvage radiation". Six years ago when my (8 year, post RP) PSA was slightly above the BCR level (~ .3, still too low for any scan to locate the source), a RO at UTSW recommended radiation of the prostate bed since he felt that the source was in that area. Two years ago when my PSA rose to 1.2 I had the 68Ga-PSMA-11 PET/CT scan performed in Melbourne, AU which identified metastases to only sacral lymph nodes...nothing in the pelvic area. Is it likely that pelvic radiation may have prevented the distant mets (local PCa cells were present; however, too small to show uptake on the scan), or would I possibly have been 'burned' needlessly in the wrong area?
I thought that the sacral lymph nodes are in the pelvic lymph node area. In the last couple of years, it was found that the pelvic treatment area wasn't wide enough, and should extend as high as the common iliac lymph nodes:
pcnrv.blogspot.com/2017/02/...
In the past year, the results of the SPPORT randomized clinical trial showed that salvage pelvic radiation could slow progression when there were undiscovered lymph node mets, but provided that PSA was sufficiently high (which yours was not at the time):
pcnrv.blogspot.com/2018/10/...
There still may be a benefit to whole pelvic salvage radiation after pelvic lymph node mets have been discovered:
pcnrv.blogspot.com/2017/12/...
Thank you Alan for your expeditious reply. I guess I am confused as I thought that they are closer to the spine. I'm having difficulty seeing their exact location in looking at anatomy diagrams. Thank you for straightening me out!
The RTOG-defined pelvic LN field covers the entire sacral area and should probably extend as high as L4/L5.
Thank you!
If it was me, I'd just sit on it. (metaphorically speaking).
Beware of sudden stops skydiving.
Thanks...I throw myself at the planet and try to miss. Semi-successful so far! (Biffed a few landings now and then.) Can't worry about PCa when you're heading toward the planet at 120+ mph!
Your PSA is still low so don't panic. I was scared of radiation too. I went through 35 treatments. I thought it would never end. That was about 23 years ago and not as sophisticated. Four years ago I went through salvage radiation. Much nicer and faster.
Given the incredibly slow rate of PSA growth that you are experiencing, it would seem that you could ignore the cancer for as long as you live and still die of something else, without ever experiencing any symptoms. But there are some countervailing issues to consider. One is that salvage radiation is only effective when the cancer is concentrated in one or a very few areas. If and when the cancer becomes systemic, radiation is off the table and, at least at the current state in medical science, no curative treatment is possible. Another is that cancer can, and often does, evolve over time. What starts as a localized, indolent cancer, can mutate and become metastatic and aggressive. That hasn't happened in 23 years - which is a great thing - but it's not a guarantee that it won't happen in the future. Given that you are apparently in excellent health, you might still be young enough to die of prostate cancer.
I hesitate to give you advice contrary to the advice of your oncologist. Unless he's a real schmo, he knows a lot more than I do. But, having said that, I'll go out on a limb and recommend that you find the best radiation oncologist you can find (more on that in a bit), and ask for a consultation. I would think Medicare or whoever insures you will pay for it. If second opinions are ever warranted, surely cancer warrants them. Even if I'm the schmo and your oncologist is a genius, it just makes good sense to get a second opinion from another expert when cancer is involved.
To find a good rad onc, you can ask people in your community, you can post information on this forum about where you live or where you're willing to travel to and see if anyone here knows a good doctor. You can ask your oncologist who he'd recommend. You can try one of the teaching and research hospitals recommended by the National Cancer Institute. See: cancer.gov/research/nci-rol... a list of every possible question you can think of. Here are some to start you off:
- How likely is it that my cancer will become dangerous in the next 20 years?
- Do you think that salvage radiation is a good idea for me? Why?
- How likely is it that it will cure the cancer?
- Where would you aim the x-rays?
- How many radiation sessions would you use? How much radiation at each?
- Is there a way to tell whether the cancer is localized in the prostate bed?
- Would you radiate the area around the prostate bed, or just the prostate area itself?
- What side effects would you expect me to experience? Urinary? Sexual? Others?
- If you think I should "wait and see" rather than get treatment now, what am I waiting for? What should trigger treatment if I see it?
There's very little chance you'll accurately remember all of the doctor's answers. Even if you take notes you'll still have problems figuring them out. So bring a tape recorder or a smartphone recorder app with you to the consultation and ask if you can record everything. Doctors I've tried this with are okay with it. They understand that patients are overwhelmed by meetings like this and can't accurately remember what they were told.
I may be being overly cautious here. There's a good chance that, if you do nothing but continue getting PSA tests, nothing serious will happen, and if something does happen, there's a good chance you'll be able to control it with drugs. But I don't think getting a consultation hurts and there's a chance it may help.
Best of luck.
Alan
Alan, I am asking the same question of you and TA since I don't know how to copy two people in one reply. I assume you are referring to prostate bed radiation when you use the term "salvage radiation". Six years ago when my (8 year, post RP) PSA was slightly above the BCR level (~ .3, still too low for any scan to locate the source), a RO at UTSW recommended radiation of the prostate bed since he felt that the source was in that area. Two years ago when my PSA rose to 1.2 I had the 68Ga-PSMA-11 PET/CT scan performed in Melbourne, AU which identified metastases to only sacral lymph nodes...nothing in the pelvic area. Is it likely that pelvic radiation may have prevented the distant mets (local PCa cells were present; however, too small to show uptake on the scan), or would I possibly have been 'burned' needlessly in the wrong area?
I understand the term "salvage radiation" just to mean radiation given when some previous treatment, usually surgery, didn't achieve the objective of totally curing the cancer. It might include carefully targeted radiation, if that's practical, or general radiation to a wide area if it's not.
I am under the impression that when the cancer is too small to be detectable by a scan, the radiation oncologist has to use whatever statistics he has about the success of salvage radiation at different PSA levels with different targets. In other words, he's got some educated guesses, but he's still rolling the dice. Your RO six years ago was no doubt going on the basis of past experience, but with no other reason to assume he was right.
There are side effects of radiation. Are they worth risking when the chance of success may be less than 50/50? My sense is that it depends on your life expectancy based on your current age and health, whether you have any other health problems that radiation could aggravate, and what your PSA doubling time is, and of course whether you have some personal preferences one way or the other. Some men want to kill the cancer and are willing to take larger risks than other men to do so.
It looks like your doubling time is long and that may mean you will do well to adopt a good diet, exercise, maybe some of the best supplements - whatever they are, and continue active surveillance.
On the other hand, you now have a precise radiation target. That may lower the risks as compared to general radiation to the whole prostate region.
Tall_Allen is more knowledgeable than I am about all of the science of cancer treatment. He may have a better answer.
Best of luck.
Alan
Alan, I very much value your and TA's opinions, suggestions and expertise regarding PCa.
Two of my other doctors (Dr. Thomas Ahlering at UCI who performed my RRP back in 2004, and Dr. Joshua Fine at Baylor in Dallas suggested "AS" as an alternative to subjecting myself to seven weeks of RT. Considering the RT back then to be a 'crapshoot' and perhaps undermining my QOL, I am very happy that I listened to them because today I am still asymptomatic and have a great QOL.
I did have the identified LN's resected when my PSA reached 1.3, which consequently lowered my PSA to .54. It however continued to climb for about nine months at which time Richard Wassersug suggested that I try tE2 gel. My most recent PSA was .014 and the ONLY side effect is a cute set of 'involuntary' augmented boobs acquired at no additional charge!
Alan, I very much value your and TA's opinions, suggestions and expertise regarding PCa.
Two of my other doctors (Dr. Thomas Ahlering at UCI who performed my RRP back in 2004, and Dr. Joshua Fine at Baylor in Dallas suggested "AS" as an alternative to subjecting myself to seven weeks of RT. Considering the RT back then to be a 'crapshoot' and perhaps undermining my QOL, I am very happy that I listened to them because today I am still asymptomatic and have a great QOL.
However, I did have the identified LN's resected when my PSA reached 1.3 which consequently reduced my PSA to .54. Within the following nine months my PSA climbed back to .71 at which time Richard Wassersug suggested that I try using tE2 gel. My most recent PSA has decreased to .014 and the ONLY side effect is a cute set of 'involuntary' augmented boobs acquired at no additional charge!
Thank you,
Ron
I went back and found your post about the tE2 (estradiol) treatment in October of last year. It sounds like you're being very active in your active surveillance, and that you're getting advice, and some treatment, from top notch specialists. I think you're doing well and, if problems arise, you'll spot them before they get out of hand.
At this point, I would think the radiation option offers only a relatively small chance of a cure and it's looking like the risks are greater than the rewards. I'm hoping you'll go for many more years with no problems from the cancer or the low level treatment that you're getting.
Best of luck.
Alan
Before I would leap blindly into salvage radiation or ADT, I would have the highest resolution scans available. You must know where to target radiation, a recurrence at 20 plus years, any developing tumor(s) could be anywhere, not just in the prostate bed,,,any number of errant cancer cells may have systemically ended up anywhere and been snoozing for years and only now are beginning to achieve a size to display a modest PSA reading. It of course would be worse than a waste to target the prostate bed when the tumor(s) are located in lymph, bone, organs or other tissues.
With your very low psa, Current imaging may not have sufficient resolution to demonstrate where the cancer is,,,PSMA or C 11 choline are the best currently,,C11 Acetate is no more. However technology is progressing rapidly,,,what is available 2 years from now,,,who know?
Let us not forget, using TA’s estimate of life expectancy possible of 10 years or more,,,I agree,,,that what we have now to serve us in this ongoing battle will look as bloodletting 10 years from now,,,if you were to forgo treatment now. No guarantees, however what is almost a certainty,,,is that treatment will likely totally screw up and compromise your very pleasant QOL, with no assurance of changing ultimate outcome to your favor
Given all,,,,I would not get on this train,,,recalling the old Kingston Trio folk song about Charlie not being able to get off the MTA because he had not the required dime.
You might want to look into a PSMA test.
If I were you, I'd start a hobby writing poetry...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 08/07/2019 7:02 PM DST
Thank you.... Lovely but sad.... (I love humor)...
I was once walking through the forest alone. A tree fell right in front of me, and I didn't hear a thing.
Did you ever think about getting a dog? (My wife let me get a blow up doll for company when she's not around or if we had a fight).
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 08/07/2019 7:56 PM DST
See what happens with unprotected sex.....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 08/07/2019 8:59 PM DST
Thank you all, for the very reassuring and thoughtful replies! At this point. I feel as though I should just thank my lucky stars and tread water regarding any more treatments. If and when my PSA really starts to rock and roll, decisions may need to be made at that point (whatever 'that point' may be) and new treatments thought out. I really appreciate all of your input, and this very specual place!
Cancer2x
As someone else suggested, I think learning about the latest radiotracer scans is a good idea, especially now, since you have time to become knowledgeable. From my reading the C-11 Choline is not good enough to show anything useful in most cases with a PSA in the 0.4 +/- range. Even one of the best and latest, still in clinical trials, not yet FDA approved F-18 DCFPYL scan has only about a 50% +/- chance of finding a tumor with a PSA around 0.5. I haven't heard of one with a better sensitivity and specificity than that one. I just had that one, with my PSA at 0.58, and it found nothing. My PSA doubling time is pretty slow, too. So, I'm going to wait until my PSA gets closer to 1.0, and then try another of the latest scans at the time.
How I got to "undetectable" PSA
Salvage Radiation Delay due to COVID 19
do we need scans after chemo completed
Median time from BCR to mets to death, without additional treatment.
What's Next?
