My journey with PCa

[lhall2]

My journey started with yearly PSA test. 4.3 to 3.9 up to 4.5 at the end of 2019. At that point my urologist thought he felt something so did 6 biopsies. 3 of the biopsies contained cancer ( Gleason 7 4+3). I elected to have robotic radical prostatectomy at the end of March 2020. My prostate, semilvascial and 11 lymph nodes were removed. 1 lymph node contained cancer. My grading was T3bN1. I postponed further treatment until I healed and recovered from incontinence (got to zero pads). During this time, I had PSA tests. The 1st couple were <0.1. I then switched to ultra sensitive PSA resulting in 0.028 then 0.026. My understanding is without a prostate my PSA should be 0. So my minute PSA could be a result of a wrong test ( same lab doing the test) , my surgeon left a minute amount of prostate tissue generating PSA ( surgeon has done over 10,000+ prostatectomies so I felt good about his capabilities), I still have some cancer cells floating around hopefully in my prostate bed area. Not wanting to play Russian roulette with cancer, I elected to have whole pelvic 40 SRT sessions and ADT treatment ( 6 mos Lupron with my testosterone at 469.4 ng/dL before injection). I finished my radiation about month ago and two weeks ago had ultra sensitive PSA and testosterone tests. My PSA was 0.014 and testosterone was 3. Other than frequent hot flashes and lack of sexual activity, my life has returned pretty much to normal ( walk 18 holes of golf 3/4 times a week, manual work around house, hiking, etc). I will be having my follow-up visit with the radiation oncologist in mid August. Ant thoughts on AS and/or additional treatments would be appreciated

Thanks

[Tall_Allen]

With a positive lymph node, you should have 2-3 years of adjuvant ADT.

[StayingOptimistic in reply to Tall_Allen]

TA, I have a positive pelvis LN, was put on a clinical trial at MSK and was randomized to ONLY ADT. According to the trail instructions, it supposed to be for one year IADT, then stopping and watching. I still have another 4 months of ADT before the year is gone. Should you think I should drop out of the trial of and continue for another year of ADT? I know, I shouldn’t be asking a question like that but just wondering what you think? Thank you.

[Tall_Allen in reply to StayingOptimistic]

There is no definitive data, which is why they are doing that trial. Is it NRG-GU008? I heard they were changing the trial to exclude Zytiga (I'm not sure that's a good change).The best data so far is a study at MSK. Talk to them about it:

europeanurology.com/article...

[StayingOptimistic in reply to Tall_Allen]

Thanks, TA for your thoughts. I am sorry, I do not know the number of the trial but it has 3 arms( Firmogon only, firmogon+ Zytiga, firmogon +Zytiga+ another drug). I was randomized to firmogon only. I will talk to my MO when time comes. Thanks again

[lhall2 in reply to Tall_Allen]

TA. Thanks for your recommendation & I will bring your suggestion with my MO & RO

[MateoBeach]

Seems to me you have made all the right decisions. 👍👍 the best duration of ADT with the Salvage (SRT) plus PLN RT is not clearly established for those with very low PSA values such as you. 6 months may be just as good as 2-3 years for you. Since ADT carries its own adverse effects on the body it is not to be taken lightly without proven benefit for your circumstances. (I also chose six months for these reasons under similar circumstances last year.)Discuss the pros and cons with you MO and RO who apparently came to the same recommendation.

You Rey low PSA came down by half after radiation. That is a very good sign. But it can take a very long time for all the treated cancer cells to actually die and PSA to reach a true nadir. Many months to a few years. And in the meantime it is typical for PSA to bump up temporarily when released from dying PC cells. So just watch it with routine monitoring and be patient. Time will tell if there are any remaining microscopic cancer sites established. In the meantime be happy with your situation and live happily with love and kindness. Paul

[lhall2 in reply to MateoBeach]

MateoBeach Thanks for your words of encouragement

[Purple-Bike in reply to MateoBeach]

MateoBeach, it is valuable to hear about the possible bumping up of PSA from dying cancer cells. With a low PSA I was inclined to go for ultrasensitive PSA testing now I may refrain from that.

It's hard to find data on appropriate duration of ADT for those with low PSA, whether SRT has been done or not. The one study I found showed a doubling of all-cause mortality for long-term ADT for those with low PSA who had radical prostatectomy. I haven't had the latter and, after six months of Firmagon, I will continue for some time with estrogen but am ambivalent about it.

[teacherdude70]

You are doing well. Lupron for 18 months seems to be the benchmark in my area.Staying active is your best action

My suggestion is to stop with the ultra sensative psa testing. The slight increases in the number by this test just increase anxiety and tension.

As others say it takes time for cancer cells to die.

A test you didn't mention is LDH. Indicated cell death. Often correlated with Cancer.

Stay calm, stay the course.

[lhall2 in reply to teacherdude70]

teacherdude70 Thanks for your response. I realize ultra sensitive PSA can jump around & that doesn’t concern me. I am at 0.014 now & if it starts to approach 0.1 I can ask the question of treatment as opposed to waiting to ask the question if it goes from 0.1 to something like 0.17. Also what is LDH test

Thanks