1. < Prostate Cancer

I need advice to help make a decision.......

Posted by chipe @chipe, 1 day ago

Just to set the background: RARP on September 16. Cancer was intraductal and they found at least 1 lymph node with PC in it. My 6 week PSA was undetectable.

Went to the radiation oncologist this morning. He gave me the choice to start ADT/Radiation (2 years ADT, 7 1/2 weeks of M-F radiation treatments) in January or wait until my PSA starts to go up. His data shows that either option is acceptable with outcomes the same. He also said there is a very slight chance I am cancer-free, but he really is not convinced and is leaning heavily toward PC lurking in me somewhere. He said it is 6 to one, half-dozen to the other.

My thoughts:
1. Both the surgeon and the oncologist are pretty sure that I am NOT cancer-free but right now the PSA is good. The oncologist said that could change with my 12-week blood test.
2. I am leaning heavily toward starting in January. Why wait for the PSA to go up? That means we are allowing the cancer to get large enough to impact PSA levels. To me, that is not acceptable. I don't want the cancer to get a foothold or grow at all.
3. I am a proactive person, not a reactive person. Having the ADT/Radiation therapy sooner rather than later is proactive, IMHO.
4. I am 71 now. As many of us here know, getting older takes its toll on our bodies. I am in good shape, very active, and not overweight. Today, I just cut down three trees, so I'm doing okay. Why would I wait a few years to start when my body is weaker due to the natural impact of aging? I know I can handle it now, but in five years, who knows?
5. He talked about the side effects: fatigue, loss of muscle mass, hot flashes. He said the radiation can also impact bowel movements and urinary frequency. Again, these are also, unfortunately, symptoms of the natural aging process (maybe not the hot flashes).
6. Is the ADT/Radiation regimen that bad that I should avoid it as long as I can?

Yes, I am leaning toward the "do it now" choice, but I want to make an informed decision. I have until mid-December to make the call.

So, if it were YOU, what direction might you take?

Thank you all!!! 🙂

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michaelcharles | @michaelcharles | 9 hours ago

Cont:
My understandings are as follows:
SPPORT trial supports WPRT together with ADT for Persistent PSA (my situation) or BCR (PSA > .2).
Salvage Radiation Treatment 4 - 6 mos postop gives pelvic area time to heal.
Your 90 day postop PSA may provide more guidance.
ADT - different schools of thought on length of ADT.
My only suggestion is to discuss or have a 2d opinion on the length of time for the ADT component; ST 4 - 6 mos or long term 24 mos.
I, and 2 in treatment friends, all had ST ADT of 4 - 6 mos.
All treated at Johns Hopkins by different Radiation Oncologists.
My radiation treatments resulted in bowel issues (discomfort/pain and diarrhea) after 4 weeks; all of which dissipated 2 weeks following completion of radiation.
ADT...sucks. My RO and the SPPORT trial convinced me to take the medication and I do not regret it, but it...sucks.
Best wishes. I went Salvage Treatment route and would choose to do so again. And my opinion is sooner rather than later.

REPLY
chipe | @chipe | 8 hours ago
In reply to @jeffmarc "The recent seminar I went to shows that intraductal is aggressive and usually means you have..." + (show)
@jeffmarc

The recent seminar I went to shows that intraductal is aggressive and usually means you have cribriform. Because of that doing something makes more sense.

I wish you had mentioned what your Gleason score is. And also a decipher score if you have one. The Gleason score tells you how aggressive it is. If it’s above seven then you are aggressive along with the intraductal aggressiveness is even a little higher. This disclosure about intraductal being so aggressive is sort of new news. I will be posting a link to the video of that meeting when it becomes available.

Yes, you could wait until your PSA hits .2 to do the salvage radiation. As they said the results are the same. With other issues, metastasis could appear while you’re waiting, but at .2 there won’t be a lot.

I’ve been on ADT for eight years. In my case, I don’t get the fatigue. I do get the hot flashes and brain fog and loss of muscle. Going to the gym three days a week now to try and rebuild my muscles. If you start weight training when you begin ADT, you may not lose too much muscle. I am 77 and not overweight, I keep a very tight lid on my weight. Some people gain weight with ADT, you don’t have to.

I would avoid ADT as long as you can. In my case, I had radiation3.5 years after surgery and was not put on ADT until my PSA started rising again 2 1/2 years later. They didn’t know I have BRCA2 15 years ago when I was diagnosed, just found out two years ago,. My PSA was 4+3 so not too aggressive, that didn’t stop PC from coming back four times.

Wish you luck.

Jump to this post

Double post. Sorry.

REPLY
chipe | @chipe | 8 hours ago
In reply to @jeffmarc "The recent seminar I went to shows that intraductal is aggressive and usually means you have..." + (show)
@jeffmarc

The recent seminar I went to shows that intraductal is aggressive and usually means you have cribriform. Because of that doing something makes more sense.

I wish you had mentioned what your Gleason score is. And also a decipher score if you have one. The Gleason score tells you how aggressive it is. If it’s above seven then you are aggressive along with the intraductal aggressiveness is even a little higher. This disclosure about intraductal being so aggressive is sort of new news. I will be posting a link to the video of that meeting when it becomes available.

Yes, you could wait until your PSA hits .2 to do the salvage radiation. As they said the results are the same. With other issues, metastasis could appear while you’re waiting, but at .2 there won’t be a lot.

I’ve been on ADT for eight years. In my case, I don’t get the fatigue. I do get the hot flashes and brain fog and loss of muscle. Going to the gym three days a week now to try and rebuild my muscles. If you start weight training when you begin ADT, you may not lose too much muscle. I am 77 and not overweight, I keep a very tight lid on my weight. Some people gain weight with ADT, you don’t have to.

I would avoid ADT as long as you can. In my case, I had radiation3.5 years after surgery and was not put on ADT until my PSA started rising again 2 1/2 years later. They didn’t know I have BRCA2 15 years ago when I was diagnosed, just found out two years ago,. My PSA was 4+3 so not too aggressive, that didn’t stop PC from coming back four times.

Wish you luck.

Jump to this post

Hi,
Grade group 5, Gleason 4+5, 9, Invasive Prostatic Adenocarcinoma Acinar Adenocarcinoma
The doc says have to have ADT, the 6 month shot, in order to lay the groundwork for the radiation. He said salvage radiation is much more effective with the ADT

REPLY
1 reply
trusam1 | @trusam1 | 8 hours ago

I have a friend, age 65, who found himself exactly in your position after surgery April 2023. He had just retired as a general surgeon and chose to undergo radiation and ADT. He was an accomplished Ironman triathlete, went back to training. A year later he won his age group at the Lake Placid Ironman and went on to finish very well in the World Championships in Kona, Hawaii.

If it were me, I would not wait.

REPLY
ricardo7 | @ricardo7 | 7 hours ago

The Psa test by ltself is not the definitive test. If you can go for the mri scan and the biopsy. These will give a better idea of size and location. I went for removal at 72. My cancer was all inside the prostate. Anything could happen in the 3 month interval between Psa tests. Cancers are unpredictable.

REPLY
shelby29 | @shelby29 | 7 hours ago

I agree with you...get it done now. It's no picnic, but it's not horrible. 30 radiation and now 2 years in on a 3 year ADT regimen. I am 73, active and also not overweight. I lift weights, walk dogs daily, cut down trees, hunt, fish, do woodworking in my shop, etc. There are downsides: lots of muscle loss, hot flashes, sleep problems, frequent urination, zero libido and slight brain fog. But I'm alive and healthy enough to thoroughly enjoy life!!

REPLY
northoftheborder | @northoftheborder | 7 hours ago

It sounds like most commenters are in agreement. If you want to fight now, then there's no reason not to fight now, especially if your onco team is on board (as they seem to be): shock and awe, the best defence is an offence, and all that kind of thing.

(If you felt differently, and wanted a little time before subjecting yourself to all the challenges and side-effects of aggressive treatment, you'd also find a lot of understanding and support here for that.)

REPLY
Sicetnon3 | @sicernon3 | 5 hours ago

I agree with your gut and “do it now”. The effects of aging can come surprisingly quickly (at least they did in my case) so do it while you think you can not when you can’t. Best wishes to you on your journey…

REPLY
michaelcharles | @michaelcharles | 4 hours ago
In reply to @chipe "Hi, Grade group 5, Gleason 4+5, 9, Invasive Prostatic Adenocarcinoma Acinar Adenocarcinoma The doc says have..." + (show)
@chipe

Hi,
Grade group 5, Gleason 4+5, 9, Invasive Prostatic Adenocarcinoma Acinar Adenocarcinoma
The doc says have to have ADT, the 6 month shot, in order to lay the groundwork for the radiation. He said salvage radiation is much more effective with the ADT

Jump to this post

My only suggestion is to think long and hard about the 6 month injection vs monthly Orgovyx pill.
My review of others' posts suggest that the 6 mo shot, and Lupron itself, can be difficult. Although Orgovyx has its detractors also.
The 6 mo injection is probably the most cost effective way to go, and "easiest" since you do not have to daily dose the Orgovyx. However, there are some advantages to Orgovyx (no initial Testosterone flare, slightly better cardiac risk profile, 3% vs 6%, and possibly better Testosterone recovery following treatment).
All in all, however, it sounds as if you are on a good course.
Best always.

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