1. < Prostate Cancer
Profile picture for abinoone

Salvage Radiation Therapy Experience

Posted by abinoone @abinoone, Feb 25 6:12am

In two days I'll complete my program of 38 radiation treatments for recurrent prostate cancer, and wanted to post a brief update on my experience, as a reference for anyone facing a similar treatment regimen. I have no idea if my experience is typical, but thought it might be a useful anecdotal reference.

Heading into the treatment I had many fears that it might adversely affect my incontinence, bowels, sexual function, etc., but I had absolutely none of these or other side effects, aside from a bit of fatigue (I've learned to take mid-day naps for the first time in my life), and one instance of diarrhea after eating chili one day 🫣. Perhaps I've just been fortunate, but overall I've been exceedingly pleased that my experience was almost a non-event. The final determination, of course, will be whether or not the treatment has been effective in eliminating the recurrent cancer.

Based on my personal experience, my advice to anyone facing salvage radiation therapy: don't let fear of risk factors overwhelm you, as the reality might turn out to be as favorable as my own. However, as the financial industry likes to warn: individual results vary, and past history is no assurance of future results.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for briang1958
briang1958 | @briang1958 | Feb 25 5:09pm
In reply to @diverjer "From what I find searching around it seems like SBRT would be about the same with..." + (show)
Profile picture for diverjer @diverjer

From what I find searching around it seems like SBRT would be about the same with only 5 treatments?? Is there some reason to avoid SBRT, looks like it's been around for a decade or more. Also, looks like it more accurate, less damage to surround tissue. Then there is something I read about a proton beam that is even suppose to do less damage?
Does everyone get this chemical re-occurrence after prostate removal. Sounds like I am in for a long haul and lots of learning. I thought a person could get it removed and in a few month be over wetting yourself and back to having sex. No problems years later.

Jump to this post

@diverjer - I had SBRT Proton Beam on my iliac nodes at Mayo. Single shot each.
Those didn't show up on latest PSMA but 4 more did.

REPLY
Profile picture for diverjer
diverjer | @diverjer | Feb 25 5:20pm

Then as I think more there is this friend of mine that didn't have prostate removed, but radiation of some kind for prostate cancer. It killed the cancer, but really messed up some other things around in that area. I just never got into all the details with him, but he would tell me if I asked. He ended up having to have some minor surgery to correct some urinary issues and bladder.

REPLY
1 reply
Profile picture for jeff Marchi
jeff Marchi | @jeffmarc | Feb 25 7:06pm
In reply to @diverjer "Then as I think more there is this friend of mine that didn't have prostate removed,..." + (show)
Profile picture for diverjer @diverjer

Then as I think more there is this friend of mine that didn't have prostate removed, but radiation of some kind for prostate cancer. It killed the cancer, but really messed up some other things around in that area. I just never got into all the details with him, but he would tell me if I asked. He ended up having to have some minor surgery to correct some urinary issues and bladder.

Jump to this post

@diverjer
My brother had five sessions of SBRT to resolve the Gleason 4+3 in his prostate. He was 77 at the time and surgery is usually not recommended at that age.

For primary treatment of prostate cancer that’s isolated to the prostate with a low PSA (Under 9) Can frequently be very successful. Usually there isn’t incontinence and ED is not a problem right away.

Salvage radiation is a very different thing. Usually, they will do IMRT as a primary treatment if there is spread outside the prostate.

REPLY
Profile picture for diverjer
diverjer | @diverjer | Feb 25 8:17pm

Interesting thanks for the information. I had 15 biopsy after a MRI found a 1 lesion PI-RADS 5. MRI said prostate was 68.7 cc, PSA density .06ng/ml/cc , capsule was intact, Neurovascular Bundle not involved, Seminal vesicles not involved, Lymph nodes Not lymphadenopathy, bones no acute osseous abnormality and I have a small inguinal hernia. They took 3 biopsy from that one lesion and they were all 3+3 and said no big deal. But while in there they took another 12 biopsy, 6 from each side. Half of them were 4+3 and half 3+4. However 2 of the 4+3 biopsy had large cribriform gland present (they said that was not good). So they are saying this is bad and aggressive and finely after a month will get a PSMA Pet scan Friday. They also are doing something called Decipher test on the biopsy and been two weeks and haven't heard back on that test. Think they had to send off somewhere for that Decipher test to get done?
I am almost 79 and at least one doctor who has done lots of prostate removals, said he would do mine if that is what needed. No one really thinks I am that old when they see me, but I am and am in good physical shape. Well I was until this cancer! I still feel fine, just a little down, anxious and wish things would hurry up.
I may be wrong, but I been saying just take the darn prostate out and be done with it! I have had Urolift and Aquablation that didn't help. Also, years on Flomax and seem to get by. The only reason all this started is PSA jumped from 3 to 4.16 in short period and some blood in semen. I may be wrong, but still think cut the blasted thing out. Then I read about even then it can come back even though it gone, I guess something left over in surrounding tissue.
Its all confusing and been dealing with it since end of November, takes forever to get MIR, and all the other tests done. To bad I am not a politician or someone famous, I bet all this would be done and a plan in place.

REPLY
1 reply
Profile picture for jeff Marchi
jeff Marchi | @jeffmarc | Feb 25 9:38pm
In reply to @diverjer "Interesting thanks for the information. I had 15 biopsy after a MRI found a 1 lesion..." + (show)
Profile picture for diverjer @diverjer

Interesting thanks for the information. I had 15 biopsy after a MRI found a 1 lesion PI-RADS 5. MRI said prostate was 68.7 cc, PSA density .06ng/ml/cc , capsule was intact, Neurovascular Bundle not involved, Seminal vesicles not involved, Lymph nodes Not lymphadenopathy, bones no acute osseous abnormality and I have a small inguinal hernia. They took 3 biopsy from that one lesion and they were all 3+3 and said no big deal. But while in there they took another 12 biopsy, 6 from each side. Half of them were 4+3 and half 3+4. However 2 of the 4+3 biopsy had large cribriform gland present (they said that was not good). So they are saying this is bad and aggressive and finely after a month will get a PSMA Pet scan Friday. They also are doing something called Decipher test on the biopsy and been two weeks and haven't heard back on that test. Think they had to send off somewhere for that Decipher test to get done?
I am almost 79 and at least one doctor who has done lots of prostate removals, said he would do mine if that is what needed. No one really thinks I am that old when they see me, but I am and am in good physical shape. Well I was until this cancer! I still feel fine, just a little down, anxious and wish things would hurry up.
I may be wrong, but I been saying just take the darn prostate out and be done with it! I have had Urolift and Aquablation that didn't help. Also, years on Flomax and seem to get by. The only reason all this started is PSA jumped from 3 to 4.16 in short period and some blood in semen. I may be wrong, but still think cut the blasted thing out. Then I read about even then it can come back even though it gone, I guess something left over in surrounding tissue.
Its all confusing and been dealing with it since end of November, takes forever to get MIR, and all the other tests done. To bad I am not a politician or someone famous, I bet all this would be done and a plan in place.

Jump to this post

@diverjer
The decipher test is very useful to tell whether you are going to have a reoccurrence soon. It gives five year and 10 year reoccurrence probabilities.

Large cribriform is really aggressive, High likelihood of the cancer coming back. A 4+3 isn’t too bad but UCSF doctors say that if you have large cribriform it changes your Gleason so that there’s at least a 5 in it.

Radiation is the preferred technique for large cribriform, But not SBRT, It is not supposed to really be effective. In that case IMRT With around 35 sessions is more effective. This is something you need to talk to your doctor about and find out what they think is best.

If the PET scan shows any spread outside the prostate, then radiation is almost definitely the Technique they use..

Here is the UCSF video that discusses cribriform in detail
https://www.urotoday.com/video-lectures/a-journal-club-for-patients-with-prostate-cancer/video/mediaitem/4452-unfavorable-histology-classification-aims-to-reduce-unnecessary-treatment-journal-club-jesse-mckenney-cornelia-ding.html
Even though you are 79 it’s very likely you will live many more years with the treatments and drugs that are available today

REPLY
View MoreView Less
Please sign in or register to post a reply.