Experience with post RP Salvage radiation

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I fear that Salvage radiation may be looming for me. As my PSA has moved from.015 to .05. The newer higher reading came from a different lab source with my primary doctor at my annual physical. My urologist office has a new state of the art PSA machine so I thought that might have something to do with it as I don't see my urologist for another 6 weeks. I did call his office this morning after getting the news from my primary doctor and they said just keep my next six week appointment and did not seem all that concerned. But they are not me so I went into instant worry mode and have ran a lot about the radiation Salvage and it was not pleasant at all. The side effects and the business about much later on after the procedure and having side effects showing up years later is disheartening.. so I was hoping maybe to hear some testimonies of people that have had the Salvage radiation and did not experience too much agony. Thanks for any encouraging words
 
Easy breezy. 10 minutes a day for 8 weeks. Had no side effects except lost 5 lbs. Dr. Gave me hell for that so I still use it as an excuse for not losing weight. That was slightly over 10 years ago. Been undeniable ever since.
 
I have a friend who had radiation to treat her breast cancer when she was 40. It worked, but now at age 75, it turns out that same radiation gave her terminal lung cancer tumors that can’t be surgically removed. She’s currently able to keep them at bay with chemo, but having chemo half the months of every year has really worn her out and I don’t think she’s willing to go through it again. I don’t know how one decides what to do. I was grateful that with my two kinds of cancer, they could just get cut out - not that a hysterectomy followed by Premature Menopause is at all easy.
 
dalexwitte said:
Easy breezy. 10 minutes a day for 8 weeks. Had no side effects except lost 5 lbs. Dr. Gave me hell for that so I still use it as an excuse for not losing weight. That was slightly over 10 years ago. Been undeniable ever since.
Click to expand...
 
Well that was the kind of reply I was hoping to hear from some.. so you weren't incontinent at all and none of the other side effects that sounded so horrible that I read about? Thank you for sharing
 
From my experience, your psa is way too low to be worrying so much now. I had salvage radiation about a year and a half after my prostatectomy and had some side effects, but not too bad. My psa was rising very slowly in the 2.25 range. All the local tests showed negative for additional cancer. I did lots of research and ultimately went to Mayo Clinic in Rochester, MN for specialized testing that showed that there was still some cancer - thus the salvage radiation.
My Dr said to always have my psa done at the same lab.
 
After PR, the PSA value must fall to levels below 0.01 or be undetectable. My doctor told me that the value of 0.2 is the critical point that must be taken into account. If it continues to rise in the following tests, there is a chance that the cancer has returned. In the case of RD007, it indicates that its levels are in a range of 0.015 to 0.05, which are safe levels. I had my RP two years ago and I get tested every 6 months and my doctor says it is undetectable.
 
I completed my salvage radiation treatment in early Feb. I had an RP in Aug of 22, and then salvage radiation (33 treatments) that started in Dec of 23.

I agree with thudson1965 - there are a number of Prostate Cancer specific websites that will be helpful in answering your questions. After checking out a few of them, I've settled on the Mayo Clinic support group. It is well moderated, and many questions similar to yours are posted with responses from a supportive community. See: clickable text

Hope this helps.
 
I had all of my treatment done at Walter Reed, where they have a Center for Prostate Cancer Research, given the number of veterans with the cancer. I had RP in December 2020, and had undetectable PSA in my first test. However, about 5 weeks after that first test, I had my military retirement physical at Walter Reed, and my PSA came back at .021, therefore “detectable.” The doctors (who are also researchers) told me that PSA detection capabilities had risen in the previous 10-15 years with more sensitive tests. In that period, the doctors/researchers said that some doctors still held to the view that salvage radiation should begin when the PSA hit .2 and was rising. However, their research suggested that “early intervention salvage radiation” at the first sign of detectable PSA showed positive benefits. I did 40 sessions plus the honoree therapy. Aside from the predicted fatigue and mental lethargy during the 8 weeks of treatment, i experienced little change. Four months after the sessions ended, though, my incontinence worsened steadily until I was essentially totally incontinent. The doctors told me that this happens in fewer than 10% of the cases. After battling the incontinence with physical therapy and Botox injections, I had the AUS implanted a year ago, and this device is like a miracle,. Read up, talk to more than one doctor, and realize that the stats are on your side. In the worst case, like my case, medical solutions are also available.
 
harrisjmh said:
From my experience, your psa is way too low to be worrying so much now. I had salvage radiation about a year and a half after my prostatectomy and had some side effects, but not too bad. My psa was rising very slowly in the 2.25 range. All the local tests showed negative for additional cancer. I did lots of research and ultimately went to Mayo Clinic in Rochester, MN for specialized testing that showed that there was still some cancer - thus the salvage radiation.
My Dr said to always have my psa done at the same lab.
Click to expand...
 
Thanks for the reply. So what was your experience like with side effects and incontinence and diarrhea and fatigue Etc. One of the side effects I have read that was really alarming was Eternal fatigue and incontinence that some reported. I'm 69 years old. I'm considered active for my age and walk 3 miles in the morning and play advanced level pickleball everyday. Thanks for any insights
 
I'm not sure who you are asking, but the side effects for me during RadioTherapy (33 RT treatments) were mainly nausea, overactive bladder and diarrhea. You put energy in the form of radiation into the pelvic region and everything in that area goes into overdrive. BTW the PSA trigger for my salvage treatment was when it reached 0.1

Regarding post-treatment side effects, the nausea disappeared a couple of weeks after the last treatment. I had a small anal fissure for a couple of months afterward. I am continent but still have bowel issues (tenesmus) - controlled somewhat by diet and metamucil although I think things are slowly returning to normal (or maybe I'm just managing them better).

So my experience is only up to 4 months post- RT, and as I understand some side effects may not show up for several months/year(s) afterward so the jury is still out.

BTW, there is something called SpaceOar (a gel injected before RT starts). It helps protect the rectum from radiation, thus minimizing the bowel/bladder side effects. I did not have SpaceOar, but if you do need salvage RT, ask about this.

Note that your salvage treatment (if you need it - but hopefully not) may include Androgen Deprivation Therapy (ADT). So you can add the side effects of ADT (frequent urination, hot flashes, stiffness, etc.) to your salvage treatment experience.

Whatever the side effects, I am willing to deal with them given that the treatments intend to eradicate the cancer.

Hope this helps.
 
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