Paranoid

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I am 18 months post RP and my last PSA check was . 01 up from . 007 which had been my last two previous checks.. so I'm very concerned about having to face the radiation business and was wanting to know how someone else's experience has been with this. I have read some disheartening reports about the radiation causing incontinence Etc.. I was fortunate and did not have hardly any incontinence after surgery but I'm still impotent and taking Cialis daily but no help.. so if some of you have been through this scenario please share your experience.

 

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Post RP, I was wearing 1 guard per day, mostly for insurance. Wasn’t the greatest result, but I was mostly okay with it. Once my PSA stared to climb over .20. That triggered my next act, salvage radiation. I had 39 trips to the bug zapper. About 6 months after my radiation. I started to experience stress incontinence. Now I’m frequently wearing 3 pads per day. They say it was likely the radiation that did some damage to my urethra and it’s not as strong as it was before the surgery and radiation. I’m currently looking at a possible solution, bulkamid that has a 50/50 chance of working. There are other more aggressive options, but I’m not sure I’m ready for those. If it helps, I’m 71 years old.

 

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Thank you for your reply. I'm 69 and would like to ask you about your PSA rise and what time frame that was over. As I said I went from .007 to. 01 after 18 months. Do you have any opinion about those figures?

 

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I had bad margins when they did the pathology of my removed prostate. It only took six months to go over .20. That was the trigger for my radiation. I think you’re still officially undetectable, that’s anything less than .10. I’m not the expert, but I believe they will watch your PSA closely and only take action when it goes above .20.
There’s a great prostate cancer support group on facebook with plenty of folks offering support and mostly great advice. Good luck.

 

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Thank you my friend.. I also had the bad margin business going on so that's why I'm really concerned

 

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If it helps any, I’ve had 3 PSA tests since radiation and I’m still undetectable (<.10) . I’m pretty thankful for that. A wee bit of pee I’m my britches doesn’t seem like a big deal. Can’t lie, it sux for sure, but it’s a blessing to have my cancer under control for now.

 

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So how long has it been since your radiation treatment and after it how long were you incontinent? Sounds like you still are a bit I was just wondering about the time frame and is there a good chance that you will regain your continents fully? Thanks again for your sharing

 

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wow! Guess I'm ignorant of these possibilities of a high PSA count with no prostate. My urologist led me to believe there would be no possibility after removal. Then after surgery he said we would have to monitor for cancer that might have spread that removal didn't get. SHOCK!
Now I'm stricken with incontinence & ED. I go thru 4 or 5 Depends per day + additional pads to help cut back on underwear usage. I use about 3 pads per diaper. Nighttime isn't too bad. I wake up & go to the bathroom 2 or 3 times per night.
Oh well. Praise God I'm alive at 73. Many of my friends & relatives aren't.

 

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So you were like me and monitoring your PSA.. when was your prostatectomy?

 

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I had my RP three years ago. My first PSA was undetectable. But my next one was, so I underwent salvage radiation and the hormone therapy, completing both 8 months after my RP. I thought I had my incontinence licked at the 7-month point, but the radiologist told me it might get worse. At 12-months post-Rp, I was leaking 10+ ounces per day, which kept going up until I reached 40+ ounces per day. I eventually opted for the AUS, which has been like a miracle. Thankfully, my PSA continues undetectable.

 

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I agree with Gitzet. A PSA of .01 is considered undetectable and your doctor probably will not recommend radiation until it goes above .20. My post prostatectomy PSA was .3 and I had 40 radiation treatments about 5 months after surgery. My incontinence did not get any better after radiation, however it did not get worse either, so far. One year after radiation I use 2 to 4 heavy pads per day.

 

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Here’s my timeline:
Oct 2020: High PSA, followed up with biopsy, Gleason 4/5 9’s
Feb 2021: Prostatectomy (positive margins)
July/August 2021: PSA climbs above .20
August 2021: Start salvage radiation (39 days)
October 2021: End radiation treatment
Oct/Nov 2022: Slight incontinence since surgery, 1 guard per day ‘just in case’
November 2022: PSA undetectable
May 2023: PSA undetectable
July/August 2023: incontinence worsens, stress incontinence, 3 guards per day
November 2023: PSA undetectable
Today: Still praying

 

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Just sharing my experience. My prostate was removed about 15 months ago. Although my nodes were clear I had positive margins with a Gleason = 8. I was continent a few months after surgery but have been dealing with an overactive bladder since (although it was slowly getting better and certainly manageable after physical therapy, bladder training, avoiding certain foods, etc.)

The PSA testing here has a detectable level of 0.02, and my levels for the next several months were non-detectible (less than 0.02). However, about 1 year after surgery my PSA jumped to 0.08 My urologist wanted another PSA 1 month later just to confirm. This time it was 0.11, so he referred me to the Cancer Agency. 2 months after that (mid October) it was 0.12

I had a CT scan and Bone scan to see if the cancer had spread beyond the prostate bed (then later an MRI to check my lower back). These were clear, so I was put in line for salvage treatment for the prostate bed (and surrounding nodes) which involves 6 months on hormone therapy (started mid Nov), and radiation treatment (started mid December).

So far I have been zapped 15 times (a treatment every working day) with 18 more to go (33 in all). The side effects are becoming more apparent (for me it has been urgent/frequent voiding, diarrhea, and nausea/fatigue - meds help with these). As I understand the side effects increase with more zapping, then they start to decrease a couple of weeks after the last treatment and hopefully after a while, things will eventually return to normal.

Anyways, your numbers are still low - certainly below the non-detectable level used for my PSA testing. What is the non-detectable level for your PSA testing? I believe the non-detect level is essentially the margin of error associated with the number, so a change from 0.007 to .01 may still be within the realm of uncertainty for the method used for PSA testing.

But check with your urologist to find out the meaning and significance of both the numbers and the trend. They may want to re-do the test to confirm whether the increase is real or not.

Hope this helps.

 

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Thanks for your response. So it is your understanding and Hope that after the radiation treatments have curtailed you will become continent again and fairly normal? I was fortunate, a month after my surgery I was pretty much good to go.. so I guess for the month of radiation treatment you're pretty much in an unpleasant situation for the duration of treatment yuck

 

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Well, what I have been told is two weeks after radiation treatments the side effects begin to decrease. Just a rough guideline.

Hopefully they decrease to the point where you were before the treatment started, and you hope they stay that way. But the posts by Ricard and Gitzet tell me that is not always the case.

 

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My doc told me the trauma from the surgery and the radiation can (not always) can weaken the surrounding tissue. Common solutions for stopping the leaking include a ‘sling’ or an ‘artificial sphincter’. Pretty sure I’m not going that route because in the grand scheme of things, I can live with 2-3 guards a day.

Lastly, for what it’s worth, I’m pretty sure having a strong core can reduce the effects of ‘stress incontinence’ because the strong muscles can help by holding everything together. I’m a wee bit fluffy around the middle these days. Doc says trips to the gym would help. Now all I gotta do is follow his advice.

Blessing to you all.

 

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Ever get the impression some doctors do certain surgeries just because they know it might lead to another?
More insurance money?

 

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Agee with Pap about surgeries and doc reimbursement - especially Medicare for us older retired guys. That’s why 5 years later I’m resisting another procedure, i.e., AUS Sling. Both are invasive although a lot of guys here swear by results after 6 months of painful scrotums. But, not only can they fail and need reinstallation, but often don’t eliminate pads. So I’ll stick by 2 pads/day, and more if laboring. Usually none in bed, as only stress induced. Someone’s doc advised exercise for stronger core/pelvic floor to assist bladder/urethra. Couldn’t agree more. For me at 76, 3/wk gym and power yoga, weights, and xeriscaping. I keep asking if anyone has had or learned about PROACT procedure, which is minimally invasive, quick recovery, short in office, cheaper (less doc reimbursements), reversible - can see why urologist aren’t doing many.