This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
I'm near six years out from a prostatectomy in March 2018, and my PSA is rising. I never stopped getting PSA tests unlike others I know (bad idea I think). Post surgery I was at .04, most recent is .36...up from .33 same month. I'm very disappointed that I'm one of the unlucky ones (I hear around 30%) who need a fresh course of treatment years after what is supposedly successful surgery. For a while the urologist attributed the PSA rise to benign tissue generating PSA.
I had a PET scan and nothing was detectable in the prostate region or anyplace else in the lower abdomen. An indistinct, very small spot was detected on a right side rib. I had a fall down stairs 3/22 and landed on that side, so may be an indication of injury...undiagnosed at the time. The radiologist who looked at the PET scan said indication of metastatic spread because of the rib anomaly...I nearly had a cardiac incident when I read that report...radiology oncologist seem to discount that opinion.
I was told if I don't get salvage radiation now, I'll probably be in bad shape at age 73-75 (I'm 65 now). If I were in my late seventies, they would probably not bother with a treatment course as this is slow growing enough to assume I'd be dead from something else first.
Anyway, the radiology oncologist wants to start hormone therapy, then radiation for several weeks. Meeting with an oncologist/hematologist today for an additional consultation. Then I have to get an MRI.
The doctor tried to assuage my fears of radiation "cooking" the organs around the old prostate bed leading to incontinence issues; even the bowels. So slow and steady and low dose radiation over the course of treatment is said to win the race.
I'm second guessing the logic of active surveillance for over 1.5 years, and allowing this to get worse than it could have been to include nerve infiltration and only partial nerve preservation. The radiologist discounts my feelings of regret. I'll never know the true answer.
My updated opinion is not to fool around with active surveillance for too long, never stop getting PSA tests and start at the age of 40.
Bill; sorry to hear you in this position. Not sure what to say here as I am no expert and only have my own experience and opinion to go by. Am wondering why they let your PSA go to .36 before suggesting any further steps. After my operation, I was at a .09 and pathology results showed some skepticism that all had been removed. After a year of rising PSA (to .12), radiation to the prostate bed was recommended and I did so. 11 years out now, PSA hangs at a steady .10 or less.
Radiation is not something to take lightly although the actual treatment, for me at least, was easy, incident free and still remains so. A closer look at your initial diagnosis info and pathology report sounds like a good place to start, - maybe with a second opinion. Determining if it is still localized or has gone somewhere else is something that needs to be sorted out prior to any treatment.
Keep in mind that the tests and scans they can give one show up a lot of abnormalities at times. At our age, we are not pristine anymore and all those wear and tear aging issues can complicate diagnosis for a specific problem.
Keep after it and my thoughts are to be cautiously aggressive towards it as there seems to be a rising trend. Jon.
Thanks Jon for your comment. There seems to be some debate as to what score is considered a cancer recurrence. The American Urological Association guidelines (internet reference): "The AUA defines biochemical recurrence as an initial PSA value =0.2 ng/mL followed by a subsequent confirmatory PSA value =0.2 ng/mL. However, a cut-point of 0.4 ng/mL may better predict the risk of metastatic relapse."
The urologist and oncologists were looking more at the doubling time which has been slow. In fact, the puzzling thing is the score was higher in the fall of 2022 than spring of 2023.
I had an MRI after the recent PET scan and still no concrete sign of any tumor, lymph gland involvement, etc... so in other words, a negative result. The radiology oncologist and radiologist/hematologist were in agreement that there must be some cancer cells that got away at the time of the original surgery and that radiation treatment of the prostate bed is needed to deal with the remaining cancer cells.
If there is any distant spread is an issue that could manifest itself eventually or maybe never...I'm hoping for the latter.
Bill: In my layman's mind, the .20 is a point where it is suspected some cancer has been missed and needs further attention to the prostate bed, a .40 might be taken to be that it is possible to have spread somewhere else(?). In small doses, it seems like this cancer is hard to pin down and treat. Though it can be slow growing, it does keep growing. Many have had to resort to ongoing treatments of hormone to control this growth. This is a treatment that I fear as aging has enough downsides without messing with one's hormones yet. That would likely be the next step for me, and I pray I don't have to go there.
If it comes to radiation for yourself, do not panic! I was afraid of it and none of my fears materialized at all. The worst part is the inconvenience of it taking time out of your day for however many treatments you get. I am ten years out from radiation and doing fine. Jon.
Hi guys,
I was a little slower out the gate. Following surgery in 2008, I went until 2021 before any PSA rise. I tried ignoring it and the annual rise until October this year when it was 0.86 and decided I needed to see someone. Only then did I research biochemical recurrence.
I have met with the urologist who did the surgery and had a PSMA PET scam. It showed nothing. The radiologist who reviewed it and my urologist agreed. I still have an oncologist appointment coming up after the new year rolls over ( couldn’t have done it this year since I’ve met my deductible?..🙄).
My fear is the same as others. I have not had any issues with bladder control since the initial recovery (I was 46 at the time) and don’t want “treatment” to address a non-existent problem. I will have to look up the benign tissue causing a PSA rise.
I wish you well and feel treatment should not be approached casually.
Mike
Thanks for your insight Mike! I have doubts too because my urologist keeps mentioning benign tissue possibly causing the PSA increase (biochemical recurrence). On the other hand the radiology oncologist says I may be OK for a while...7-10 years?...nobody knows, then I could be in bad shape. As I wrote, my MRI and PET scans were "clean as a whistle" to quote my urologist.
I am not educated in knowing what low dose radiation does to the lower abdomen in the short or long term. I'm not incontinent bladder/bowl wise, though I can get a few drops expelled with a sneeze, lifting things, etc...
So what it boils down to how much risk do I want to accept...either from treatment or going without treatment. If I were in my late 70's, I would consider no treatment, as the radiologist mentioned, as I'd likely die of something else, since most times the potential for spread is slow. But I'm "only" 65, and I couldn't deal with doing nothing, so I start radiation 12/11/23.
Bill; Glad to see some other insight given on your subject. Mike makes some good points. Treatment for possibly nothing is not wise. Every treatment carries risks and effects and so is not to be undertaken lightly. Each procedure is different for each of us. I would like to think your reading is coming from innocent tissue possibly left behind, and that is completely possible if they were conservative with the first treatment. Hopefully with close monitoring you can get an idea about the source of your PSA reading. No advice here of course only to say I am sorry you have been put into this questionable position - possibly for no serious reason. Sounds like you are watching it and preceding with care. Let's hope it turns out to be normal. Jon.
