Considering options regarding salvage... - Advanced Prostate...

Advanced Prostate Cancer

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Considering options regarding salvage radiation.

jacro profile image
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"I had robotic radical prostatectomy in April 2019 with Gleason Score of 4+3, clear margins, and unilateral nerve sparing, (one seminal vesicle implicated). Since surgery I now have no problems with incontinence, and using Trimix injection (12 units) has work well for the ED. 18 months post-operation the PSA was non-detectable, but it has over the last two years inched up to 0.25. Doctor recently prescribed a bone scan and a PET scan, both of which were negative. Doctor now suggests salvage radiation therapy, to radiate the prostate bed and lymph nodes. He also suggests that ADT would increase the effectiveness of radiation treatment by about 10%. The ultimate decision is up to me. I read and heard horrible things about ADT on the quality of life. Because I believe I am in the low to intermediate risk category I am considering doing the SRT without the ADT, or even to wait awhile longer (about six months) to see how much my PSA levels change first. Any thoughts or suggestions from you guys on the forum?

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jacro
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Tall_Allen profile image
Tall_Allen

Adjuvant ADT is only 4-6 months. If treated soon, you may be able to forgo whole pelvic radiation, but if you wait until PSA is higher than 0.35, you will need whole pelvic radiation in addition to prostate bed radiation.

prostatecancer.news/2022/05...

jacro profile image
jacro in reply to Tall_Allen

Thanks, that's basically what my doctor told me that adjuvant ADT increases the relative success rate of the RT from 60% to 70%. I like to learn more about the potential short-term and long term side-effects of the ADT.

Jancapper profile image
Jancapper

I have been on ADT (Lupron + Casodex) since September 06, 2022. I guess I am one of the very lucky ones as I am not encountering any side effects at all. No hot flashes, no swollen or tender breasts, no nothing. Yet my testosterone has dropped to 15 and my PSA is 0.35, down from 14.5. I chose the 6 month shot and will continue for 2 years.

Justfor_ profile image
Justfor_

If the PET scan was PSMA and came out negative you have a 20-25% more favourable starting point compared to a blindly irradiated person. I had my RP a month later than yours and currently buying time to sRT with Bicalutamide. Check my relevent thread if interested.

Jbooopin profile image
Jbooopin

You could always stop ADT if you feel it's terrible. Everyone reacts differently

RMontana profile image
RMontana

Jacro, I am very similar to your case...here is my 'Woulda, Coulda, Shouda' list of things I would do differently should I wake up in a remake of 'Groundhog Day.' The key for you as I see is get a PSMA PET before radiation. But I would get sRT for sure and ADT before shrinks the tumor and I read by a lot more than 10%. Also ADT has really bad impacts on your penile tissue; beware! BUT you can counteract a lot of it just being informed and using Injections or a VED to stretch and exercise your penis...I did not know any of that after my RP...see my LINK here and hope this helps...TNX

LIS: healthunlocked.com/active-s...

ADT Effects: healthunlocked.com/active-s...

PSMA Effectiveness; healthunlocked.com/active-s...

Blackpatch profile image
Blackpatch

you seem to have a pretty clear understanding of your own position and to just be seeking reassurance concerning the ADT impact. Having been through the same myself, my strong advice is get the ADT, and dtick with it four 6+ months. I can assure you the regret if you don’t have it and end up with recurrence will far outweigh any inconvenience the ADT brings. You can reduce the impact by upping your frequency and intensity of exercise, but beyond that it’s just chance that will determine how you react. You may well not feel like using Trimix for a while, but the fact that you’ve been using it will mean your penis is unlikely to be heavily impacted by a short course of ADT(12 months) and will fully recover when you re-commence regular stretching. If you’re really worried about this, use viagra or similar regularly to keep blood flowing.

jacro profile image
jacro

I appreciate the feedback, and I'm glad that I was directed here by a fellow from another site. I too feel that I would have done things differently had I known what I know now. My URO, and ONC says that concerning the sRT there is no reason to be worried; not to lose sleep over it. The devil, of course, is in the details. It's definitely helpful to be reassured by persons that have experienced it. One question that comes to mind now is what options are there for ADT before RT. On the forum here I read about a variety of different compounds used to block testosterone. My doctors suggest one injection that lasts for six months, prior to the RT. I now realize I should get more information, and see if there are any options for me.

FlyJ profile image
FlyJ

I am in very similar situation to you jacro (see my bio). The savage radiation's most difficult part to me was holding a full bladder during treatment. The last week or so of SRT, I had more urinary urgency and looser stools- that quickly left. I am now 3 mos "into" my 4 month lupron injection. Hot flashes have been my most noticeable SE. Some at night waking me requiring removing bed sheets, some in car requiring AC or opening windows, some at home where I can remove any layers of shirts. Maybe 6-8/24hrs each lasting < 10 mins. All in all, tolerable.

The way I read the studies short term ADT (with SRT) reduces risks of 2nd BCR- which would require longer term ADT. I did ADT despite a low PSA (.17)/neg PSMA scan because of a Gleason 9/high decipher score.

jacro profile image
jacro in reply to FlyJ

Although I'm sure the hot flashes are uncomfortable, I think I'm mainly concerned about the potential psychological effects of dealing with fatigue and depression and loss of libido .

FlyJ profile image
FlyJ in reply to jacro

I didn't have any depression/fatigue but remained very physically active. Perhaps some brain fog..... Libido does take a hit.

Shotgun2322 profile image
Shotgun2322

I had very similar experience, my decision was to add ADT to radiation because I'll take any advantage I can get and the evidence is there. There's also evidence that hitting it hard as soon as PSA starts rising is better than waiting. I was very wary of the whole idea since I'm athletic and wondered about muscle loss etc.

Here's what happened: I had an Eligard injection and then I had some hot flashes. Not too bad and totally survivable. My wife was very entertained. (One word of advice, I got a chiller for the bed, it's expensive but it totally helps the hot flashes) I worked out everyday and I think a good weightlifting, walking and cycling routine helped me keep muscle and stay energetic and not gain too much weight. I had to cut back my usual routine just a bit because radiation wipes you out just a little bit (actually, not too bad). My sex drive disappeared. My blood sugar got a little harder to control. My cholesterol went up. I got a little belly. Clearly testosterone is needed for some key metabolic systems. I stayed upbeat because a bad attitude doesn't help anything.

So, six months later the ADT ended and it took a while for me to feel like myself again. A year later, everything is back to normal and here's the thing: My PSA is .001, so it was worth it. But only you can decide if it's worth it for you. Personally, I'll take any statistical advantage I can get. Why do through all the stuff that goes along with RP and then not do all you can? Good luck, and be well.

jacro profile image
jacro in reply to Shotgun2322

Thanks, for sharing your experience.

I just went through the same decisions with about the same starting point, and in my case decided that the 6 month Lupron with radiation to the prostate bed was worth the risk/reward trade offs. Got the Lupron in October and have completed the first week of radiation. SE’s thus far have been a few mild hot flashes and some fatigue. My power output on my bike has gone down 20% in the last 2 weeks, but if I don’t ride I feel even more tired just sitting on the couch. My advice is that exercise throughout whatever treatment you decide upon will lower your SE’s, or at least make it feel like it does.

packfan profile image
packfan

I would do everything possible to increase the likelihood of a curative treatment in these early stages. Having it recur in a couple of years is a much tougher problem than SRT and 6 months of ADT in my experience.

I do wish you the best!

Papillon2 profile image
Papillon2

👽

Nusch profile image
Nusch

Can only recommend doing the ADT. I have almost no side effects. I follow a whole food plant based diet and exercise daily (jogging and weight lifting). More than hot flushes I suffered from not working with dumbbells at the start. And I lost all my muscles. Since I started weight lifting I got a lot of my muscles back. Feels better and you look better in a T-shirt. 😉

dans_journey profile image
dans_journey

Hi. Our stories are nearly identical.

I had a RP in January 2011 and my PSA was undetectable for nearly 5 years when it came in at 0.05. But it was growing so slowly (doubling time measured in years), my medical team and I agreed to monitor. It took until June 2021 for it to hit 0.20 and, at that point, we started the discussion about SRT.

I went for a PSMA PET scan when my PSA was 0.23 in November 2021, and the results were inconclusive at that PSA level.

After much discussion and consideration, and my PSA accelerating in its increases (to 0.36), I opted to proceed with concurrent ADT and SRT.

I received a 6-month dose of Eligard on 1 May 2022 and started 35 sessions/70 Gy of SRT on 7 July 2022 (ending 26 August).

I tolerated the Eligard better than most. I had ZERO hot flashes, and the only real side effect was mild fatigue (felt like I was firing on 6 or 7 of 8 cylinders). It's now 7+ months since I had the injection and I'm doing fine.

The SRT really knocked me for a loop near the end. Fatigue was considerable and I had little energy to do much of anything. That lasted for about 3-4 weeks after treatment ended, and my energy levels returned.

At my 3-month post radiation follow-up appointment, my PSA was 0.05. We attribute that mainly to the Eligard, and it will likely be another year before we know if the SRT was effective. I'll have my PSA checked again in March 2023.

Good luck with your decision and the treatment.

jacro profile image
jacro

Thank you all for the advice and support. I’ve contacted the radiologist and will be getting a blood test later this week and have an appointment the following week to take the Lupron injection. The sRT will be for 8 weeks at 5 days per week. I will keep in touch.

Hostage46 profile image
Hostage46

Well this is a timely thread. I’m about 2.5 yrs post RALP. The slow PSA rise began a year ago. Two inconclusive PET scans, the most recent one last week and a PSA of .13 and my RAD ONC is suggesting a few options to include: keep watching the PSA… (but why wait?) 7 weeks of salvage radiation with an option of ADT.

Initially I was thinking ADT wouldn’t be “necessary”. But this thread has me re-thinking.

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