I am trying to decide if at the end of my ADT treatment in Dec 22 if I need to go on something else or just wait and see if PSA increases.

[rozjr]

Has anyone else just had RT to prostate + pelvic lymph nodes with 2 yrs ADT no other added therapy yet? This is my first post on this site. PSA tests as follows:

5/21/21 one month post RT .5

11/21 .19

6/22 .08

[GP24]

You can stop ADT and observe. This was the intention of your RO when you began two years ago. If the PSA value gets above e.g. 2.0 ng/ml you can discuss additional steps with your MO. Some doctors wait until it gets up to 10 ng/ml or mets can be detected on a ct/bone scan. Some patients can continue for many years without further treatment.

[rozjr in reply to GP24]

Thanks for the reply. I only wish I had come across this site in the beginning. It probably would have influenced my treatment right from the start. Going forward I will see what my PSA looks like in Dec 22. I have not read any posts of people who have had IMRT with a two year regime of eligard only. Usually, there is additional second generation treatment as well like Abiraterone right from the start.

[GP24 in reply to rozjr]

You could add Abiraterone if you had bone mets or lymph node mets outside the pelvis. If this is not the case, no need for adding anything to ADT after radiation. I personally would have done six months of ADT only according to trial reported by Carrie. But if you had 24 months that is definitely enough for now.

[TylexGP in reply to rozjr]

I should have read more carefully. Regarding your lymph nodes are they only in the pelvic region. If yes then you are likely T3b vs T4. In either case the only thing I would have done additionally is to add abiraterone at the start of ADT.

[TylexGP]

I am similar HDR Brachytherapy and then EBRT to pelvis and nodes. I still have 8 month to go on my ADT. PSA on 9/22 0.06. Plan is at 2yers to monitor PSA to see if we have a durable remission. My profile has all my deatails.

[rozjr in reply to TylexGP]

Thanks for your reply. Looks like things are working well so for you. Wish you continued success. What are the side effects. I have severe muscular issues, started after my third 6 month shot in Dec 2021. looking forward to going off ADT in Dec 22 so that I can start to rebuild shoulder muscles.

[Benkaymel in reply to rozjr]

Hi rozjr, as you've probably read in other posts on here, one of the most important things you should do during ADT is regular weight bearing exercise - 3 or 4 sessions per week. ADT will erode your muscles, so you need to keep up the exercise to counter it.

[TylexGP in reply to rozjr]

Hi for me the hardest part of the ADT has been emotionally and psychologically to the point I sought out professional help. Which really helped. I also have ED which Trimix has addressed. I find physical exertion either through excercise or manual labor helps me immensely. I wish you a strong durable response when you come off ADT and a quick recovery of testosterone.

[London441 in reply to rozjr]

You wrote:

‘looking forward to going off ADT in Dec 22 so that I can start to rebuild shoulder muscles’

It’s a common mistake to wait until going off ADT to do this. Whether to build or ‘rebuild’, the time is always now.

Yes your results will obviously be better once off ADT, but to not train on ADT means digging deeper hole of atrophy, and faster. One that becomes more challenging to crawl out of due to advancing age, with or without testosterone. Start now instead.

[timotur]

At the end of your ADT regimen, you should take your PSA test for two or three 3-month cycles and see where it lands and if there's a trend. Usually after radiation a nadir develops after 12-18 months which can be used as a future benchmark for the "nadir + 2.0" rule of thumb for BCR. If, per your profile, you're Stg 4 with mets to local pelvic LN's or 5 mets or fewer to bone (oligometastatic), you could still be considered curable. Your PSA levels would then be an indication of when to do a PSMA scan. Best--

[Tall_Allen]

All you can do is wait and see if you are cured.

[Don_1213]

Your post is confusing on what readings you had on what dates.. might I suggest:

5/21/21 ...... 0.5 (1 month post RT)

11/21/21 .... 0.19

6/22/22 .... 0.08

That's a bit more understandable. You also didn't give us some information - even in your bio. You were stage 4 - prostate and lymph nodes. What was your Gleason score?

You had 44 treatments of some sort of RT - what technique/treatment regime was used (IGRT, IMRT, IG/IMRT, Proton?) How many G (Gray) was delivered? Was it a dose-elevated treatment plan (basic RT to the prostate bed and prostate for XX treatments, then XX treatments targeting the tumor in the prostate)?

I know your radiation oncologist has all this info. Hopefully you also have a medical oncologist who is guiding the treatments. They'd be much better situated to answer the question for you. They don't have any interest in making your treatment fail - they only want it to succeed.

As a general guide - most MO's and RO's consider anything below 0.1 (>0.1) to be a good number while you're still on ADT. Other drugs you might be taking (finasteride) can make the number lower than it actually is (general rule - if you're on finasteride for peeing problems, double the PSA reading..)

I suspect given your current PSA, and if you're not on finasteride, your oncologists are fairly confident you can come off ADT at 2 years. You can expect the PSA to rise for several reasons: (1) You still have a prostate, and as your testoserone recovers after discontinuing ADT the remaining non-cancerous cells in your prostate will produce some amount of PSA. (2) There is a rather common (about 30% from some studies) rise in PSA after ADT is stopped - usually 6 months to 2 years later. The PSA can drift around a bit - mine is floating between 0.15-0.27 right now, so centered around 0.2. That's considered normal and some studies have shown a correlation with long term survival and this "PSA Bounce" (Google it.)

If it was me - I'd talk to your doctors. Ask them what you asked us.

Good luck!

[rozjr in reply to Don_1213]

Diagnosis: Stage 4A, Gleason 5+4 =9 T2 N1, Radiation to Prostste+Pelvis (IMRT S )@ 7920cGy over course of eight weeks.

[Don_1213 in reply to rozjr]

Great. G9 obviously puts you into the high-risk category. Having lymph-node mets means that besides the radiation treatment, some systemic treatment is also needed (the ADT.) ADT that's started before the radiation treatment (about 2 months before) has been found in studies to increase the effectiveness of the radiation treatments.

Your treatment was very similar to mine. I'm G10 (or G9 - depends on which of 3 reads you want to believe), with no evidence of spread. My PSA wasn't highly elevated at time of diagnosis, but it was elevated when compared to my usual PSA reads (it was around 3.4 when diagnosed, usually it had been under 1 or just slightly above.)

The treatment I had was much as yours - ADT/IG-IMRT-ARC radiation with the prostate boost - at 83G (8300cG), then continuing ADT for a total of 18 months on ADT.

6 months after the last shot of Lupron my T finally started increasing, leveling off at about 1 year from the last shot - with testosterone in the 300-350 range. My PSA went from undetectable (<0.1) while on ADT, to around 0.1-0.14 at 6 months after stopping ADT, then to 0.19-0.27 after discontinuing Finasteride at about a year after the last Lupron jab, and has stayed in that range since then (about 18 months).

It's stayed steady in that range for the past 18 months. Based on what I know about PSA, Finasteride and recovering testosterone - the numbers are actually about where I expected they would be. Given that PSA-Bounce isn't uncommon with men who received RT/ADT as a primary treatment - the numbers don't worry me. Even without a PSA bounce these would be considered good numbers.

Two of my oncologists (urologist and the radiation oncologist) claim I'm "cured".. my medical oncologist isn't quite as optimistic, and likes to keep an eye on my PSA levels. Right now (I had a visit with him Friday) - I won't say he showed "concern" about my PSA levels, but he did show interest in continuing the regular PSA tests - but extending the time to 4 months instead of 3.

I really think you're OK with the numbers you're seeing. I'd keep up with regular PSA tests (mine are actually more frequent than 3-4 months since I have two MD's ordering them, and I try to stagger them so on average I see a PSA read every 6-8 weeks or so). If your numbers stay below 0.5 - I think you have nothing to be concerned about. If they do reach 0.5 then it might be time to consider a PSMA-PET scan (what my medical oncologist suggested) to make sure nothing much is going on.

[rozjr in reply to rozjr]

Thanks for sharing the information. I wish you continued success. It does help to have people sharing the same or similar experiences. I continue to learn from the posts.

[TJGuy in reply to Don_1213]

 on finisteride (5 mg)) or Propecia (1 mg) PSA will be reduced by at least 50% so 1.0 is really 2.0. But if you been on either more than 2 years 1.0 become 2.4

[E2-Guy]

I highly recommend trying transdermal estradiol gel (tE2).

[Don_1213 in reply to E2-Guy]

Why? What does taking this accomplish?

[E2-Guy in reply to Don_1213]

It's an easy way to 'keep' your PSA down and your T low.

[Don_1213 in reply to E2-Guy]

Thanks. I found a number of papers on it - this one was interesting: physiciansweekly.com/patch-...

[babychi]

We asked Oncologist same question. He said “keep doing good for yourself”. We have had no further treatment since 2020. Stress free lives is key for us. We were Gleason 8/9 with some escape from gland. We are 5+ years since diagnosed. 39 EBRT over 8 weeks in 2018. 2 years of Zoladex implant. Now at 2 years since ceasing ADT we are no evidence of disease. PSA 0.04. Try to eat organic fruit and veges. Very little meat and eggs. We believe that lifestyle changes are worth the effort. No booze and flashpacking the planet. He walks, does weights and we expect to live a few more years yet😜. Could get run over tonight!😜

[anony2020 in reply to babychi]

Is egg bad?

[Nusch in reply to anony2020]

I stopped all animal based food five years ago and switched to whole food plant based diet without sugar, oil and alcohol. Never felt so good.

[babychi in reply to Nusch]

Works for us too but we include some organic chicken and freshly caught local fish twice a month.🌺

[anony2020 in reply to Nusch]

What about soya? Is it bad for advanced PC?

[Nusch in reply to anony2020]

I have some soya in my daily oat meal. From what I researched it’s fine if you don’t eat too much.

[babychi in reply to anony2020]

Hi again, we researched foods to avoid and eggs and meat were foods we could do without. We try to eat only organic foods and follow whole foods plant based with some fresh caught fish and organic chicken now and again. Research is key. We have a choice what we eat and we choose what works for us. Great outcomes to you.🌺

[Billybob2]

worked out, stayed active as much as I could. Eat grass fed only meat, fruits veggies we grow mostly. Next psa test nov 1. We will see

[TottenhamMan]

I was diagnosed 2 years ago with locally advanced Ductal adenocarcinoma of the prostate. I had seminal vessel and neurovascular bundle involvement and one suspect lymph node. I was Gleason 8. The bone scans and CT scan showed no distal mets. I had 6 weeks of radiation. I have been on 6 month Eligard shots for the past two years. My PSA was tested every 6 months and my past three PSA test results were <0.1. My testosterone was <0.2 which is castrate level. My oncologist has stopped ADT after 2 years and I am now into the watchful waiting stage with PSA & Testosterone tests every three months for the foreseeable.

When I met with the oncologist two weeks ago, she said I was doing well. She said that she will do nothing until PSA goes over 2.0. At my age of 70 she doesn’t expect a big increase in testosterone level.

I’m not sure where that puts me relative to remaining cancer cells in my prostate. It seems that we treat PSA and testosterone levels but we cannot directly test for any remaining cancer.

Anyway, that’s my story of my ride on the cancer train so far. I’m at a new station, waiting for the next train. I hope it never comes.

[Seasid in reply to TottenhamMan]

you can get a 68GA PSMA PET/CT

[TottenhamMan in reply to Seasid]

Thanks, but it’s not approved for use as SOC in Alberta Canada yet. I asked and they said it might be approved sometime in 2023.

[Seasid in reply to TottenhamMan]

why is Canada so much behind?

[Purple-Bike]

Similar to you, I had radiation to prostate, pelvic region lymph nodes after dx two years ago, followed by radiation to a single bone met. ADT only, for ten months. Since one year ago no SOC medication.

[TJGuy]

I am on that same road. RP in 2017, persistent PSA. PSMA and Choline scans found lymph nodemets in pelvic region.

2019 whole pelvic radiation and two years Lupron.

PSA NADAR <0.01

Came off ADT 15 months ago PSA slowly rising currently 0.538. Will be having PSMA scan in few weeks.

Object is to see if we can find PC, and if treatable.

Under care of Dr Kwon at MAYO Clinic.

Took 6 plus months to get testosterone back up, Took 6 months to shift fat around gain muscle, to begin losing weight. Have lost 25 pounds to date, ripped again,and have strength again.

Have exercised by riding my bicycle 2 to 3 hours 5 plus days per week to lose weight.

If scan is negative will let it rise to 2.0 most probably and scan again.