Still undetectable!

[wallygator]

Good news - It's been 4 years since robotic RP and 3 years since salvage radiation. Had my annual checkup on Friday and PSA remains undetectable. Next checkup is in 6 months.

[Rustykia]

Congratulations bud. This week I also got my PSA test results post RP (done in Oct’19) and the numbers were undetectable. I’m incredibly happy and relieved. Have a good Memorial Day weekend

[wallygator in reply to Rustykia]

Congratulations! However, even after 3 years, I get a little nervous at each PSA test. You probably will as well. Best of luck to you.

[jimreilly]

congratulations! always a relief, isn't it!

[Leeaussie5]

Great news!

[Handdrummer777]

Great! Good news indeed!

[Paulo1968]

Great news and I congratulate you for that. Crossing fingers it stays as this level.

I have a question when having a look at your previous posting. You said that after 1 year of RP you had a recurrence at the PSA level of 0.05 ... This is where I am now after 2 years and for 2.5 months now after an increase from 0.03. My doctor says there is nothing to do so far and it is fine at this level. I wanted to understand what made you and your doctor decide for radiotherapy?

Thanks in advance for a feedback.

[wallygator in reply to Paulo1968]

This is a personal decision by you with your doctor's advice. My surgeon recommended radiation. I was at zero immediately after surgery and my PSA rose after only 9 months. Perhaps it was this relatively quick rise that worried him. I know that some think that a small rise is not worrisome. Sometimes it has to do with the rate of increase.

Many think that .05 is not enough to trigger salvage radiation. You need to realize that salvage radiation causes further damage and carries a risk of secondary cancers later. Also, the current practice is to use ADT in combo with the radiation. For be, the ADT had greater side effects than the radiation.

My oncologist considers .04 or less to be undetectable. There is an error factor in the test. You might want to wait for one more test to see if it comes back down (or not). Everyone is different. All you can do is take the information you have and make the best decision you can. Good luck.

Sincerely,

wallygator

[JPnSD in reply to wallygator]

First off...Congrats! Like Paulo1968...had RP 8/2019 (GL 9 Stage 4)...was at .01 at 10 weeks...then 3 PSAs starting in Jan...at.05/,04/,05 (April). And my URO and MO want to wait longer for any next steps. I have recovered from incontinence and ED. The ADT side effects sound terrible....what were your side effects after the salvage radiation?

[wallygator in reply to JPnSD]

I had very few side effects from radiation. I had a little fatigue during the treatment, but continued to work full time while having a treatment every week day. I was fortunate in that I worked at the same hospital where I received the radiation treatment. I would go to work at 7:30 AM, work until 1:30PM, have my radiation treatment, go back to my desk after the treatment, and work until 5:30PM. I had 40 treatments that ended in early June.

They told me to be prepared for a number of different side effects, but I had very few. It inflamed my hemorrhoids. There might have been some structural damage to my anus. I seem to have a harder time "getting clean" after a bowel movement than before. Again, this is a very individual thing. Your body may react very differently.

ADT was much harder. I had serious hot flashes. I was irritable. I lost all interest in sex and the ability to have an erection. I gained weight. I started ADT (Lupron and bicalutimide) about 6 weeks before I began radiation. I chose to stay on ADT for a full year. It took some time, but eventually my libido and erections returned. I have yet to get rid of the weight. Oh, I should mention that I had a heart attack about 5 weeks into the ADT. It turns out that there is a statistically significant increase in heart attacks during the first 6 months of ADT. Nobody even mentioned that before I started ADT (not that it would have made a difference in my choice).

All and all, I consider myself quite lucky. I am four years out from diagnosis. I have normal erections and libido. I can pee better than young men and my bowel function is pretty much back to normal (with the exceptions mentioned above). It seems to me that I've lost about 1 1/2" in penile length when erect. I was not particularly well endowed before the surgery, so I don't have a lot left, but that's a small price to pay to avoid an early death (IMHO).

I haven't had a partner for years (quite a few before the surgery), so it hasn't really had an impact on my sex life (I had none). I have been recently thinking about dating again and I would entertain the possibility of sex.

BTW, there are new treatments that are becoming available since my treatment. I understand that High Frequency Ultrasound may become a possible treatment. Immunotherapy is improving every day. I think we are getting closer to making cancer a chronic, treatable disease and possible find a cure for most cancers.

Ultimately, the decision is yours. You must weigh the possibility that your side effects and impact on you life against your risk of pain and death. I was terrified by the prospect of bone metastasis, which may have colored my response. Good luck. There is hope of a fairly normal life after prostate cancer.

--wallygator

[JPnSD in reply to wallygator]

Thank you. I appreciate the candid response. BTW...recently put a bidet add-on to my toilet....simplifies clean-up and much more thorough. Thanks again.

[Paulo1968 in reply to wallygator]

Thanks

I have had 0,03 most of the time for 2 years with 2 lower levels of 0.01 and 0.02. Now went up to 0.05...

My doctor says he is not paying any attention till it reaches 0.1. But we are always worrying, aren’t we?

Take care

[Chicagoguy50]

Great news, glad to hear! I had RP in January 2020 and tested for PSA three times afterwards: .09, then .08 and then .09. I am having radiation in October as my Dr. says it appears there may be small amount of cancer left and this will hopefully get it. Margins did show clear and has not spread to lymph nodes. Just glad I can take a break for a bit and start in October after a sabbatical!

[FellowSurvivors]

Congratulations Wallygator. Had my last treatment of Cyber knife on March 31. No PSA test has been ordered yet . See my urologist in August. Hoping for positive results.

[wallygator in reply to FellowSurvivors]

Best of luck!