Should I have RT, given the possible ... - Advanced Prostate...

Advanced Prostate Cancer

21,055 members26,260 posts

Should I have RT, given the possible permanent SEs

Dazzaboy profile image
38 Replies

I had an RP in 2015, and was clear until diagnosed in Dec 2022 with metastatic Pc, PSA .61. Started Bicalutamide and have had 2 Zoladex injections . PSA is now.01. My OC now wants to start RT with 33 sessions. I want to know if I can avoid RT altogether, because of the damage and side effects that might happen. Can I deal with this PC long term with just ADT? Anyone not used RT?

Written by
Dazzaboy profile image
Dazzaboy
To view profiles and participate in discussions please or .
Read more about...
38 Replies

Metastatic to what extent?

Dazzaboy profile image
Dazzaboy in reply to

PSA of .61. No other signs of bone Mets, organs etc.

in reply to Dazzaboy

Then you’re not metastatic.

Do the radiation. I’m 30 of 33.

Including lymph nodes. No SEs I cant deal with.

Mgtd profile image
Mgtd in reply to

Like Terminal I am completing 20 of 20 sessions of radiation today. Side effects were minimal. For me the BIGGEST issue was going to those sessions everyday. I would not defer treatment because of the fear of side effects. That is my experience.

treedown profile image
treedown

We all vary on responses to all treatments. I for one had no real issues with 44 treatments 80gy in early 2020. If you do decide to go with it best of luck yours goes very well.

Dazzaboy profile image
Dazzaboy in reply to treedown

Did the radiation treatments work? Are you cancer free or still doing ADT?

treedown profile image
treedown in reply to Dazzaboy

Scans would indicate that it worked however at diagnosis they had always suspected more cancer than conventional imaging had shown. So there's nothing currently showing where I had radiation on PET/CT but there is few small tumors elsewhere so I am back on ADT for life now unless a miracle cure is found.

6357axbz profile image
6357axbz

I had two RT treatments 2 years apart. Each one was for 28 days of daily radiation, not including weekends. No significant SEs. My MD Anderson RO was very experienced.

Dazzaboy profile image
Dazzaboy

Did the radiation treatments work? Are you cancer free now?

in reply to Dazzaboy

You are recurrent. Most likely you will never be cancer free.

Do the radiation, best chance you have.

Tall_Allen profile image
Tall_Allen

Is there a reason you'd rather suffer the side effects of permanent ADT than risk the usually temporary side effects of radiation (assuming you incorrectly stated "until diagnosed in Dec 2022 with metastatic Pc"?

Dazzaboy profile image
Dazzaboy in reply to Tall_Allen

My urologist who did my RP in 2016, called me in Dec 2022 to tell me the cancer was now metastatic, with a PSA of .61

I was then transferred to an OC for hormone therapy and radiation.

I would be ecstatic if the urologist was wrong!!

Since my prostate is gone, and he says the cancer is back, with a PSA of .61….is that not metastatic?

So where is the cancer? And what does recurrence mean?

Tall_Allen profile image
Tall_Allen in reply to Dazzaboy

Metastatic means you have a diagnosis of metastases - you don't. The cancer spreads from the prostate bed to the pelvic lymph nodes and the bones. There may be metastases that are too small to be detected. You have to treat what you can't see. This is the best time to have salvage radiation, as it still may be curable.

Biochemical recurrence means that the PSA is detectable after prostatectomy.

Magnus1964 profile image
Magnus1964

You could try cryosurgery. It doesn't have the long term side effects. If the cryosurgery fails you can then go to radiation.

wilcoxsaw profile image
wilcoxsaw in reply to Magnus1964

Cryotherapy on what? He has no prostate.

Magnus1964 profile image
Magnus1964 in reply to wilcoxsaw

I am not familiar with the particulars, but if cancerous tissue is reachable cryosurgery may be possible. Just a suggestion to ask his urologist.

Dazzaboy profile image
Dazzaboy

I would love to eliminate this cancer, and if radiation will do that, then I’m all for it. However, I don’t see from the many blogs on this site that folks are saying the radiation therapy eliminated the cancer. They all seem to be doing ADT after the radiation therapy. And this ADT seems to be required forever. So what does radiation actually achieve besides eliminating some possible spots?I can live with the SEs of ADT now, so I’m wondering why take the chance on permanent incontinence - or worse - through radiation? I’m just asking at this early stage before I accept radiation whether anyone has NOT had to continue with ADT after radiation?

Tall_Allen profile image
Tall_Allen in reply to Dazzaboy

Information should not come from anecdotes that people may or may not choose to write about on social internet sites like this. Information should come from clinical trials conducted among hundreds of men chosen at random.

Salvage radiation cures recurrent prostate cancer. This has been proven in numerous clinical trials among thousands of men.

spencoid2 profile image
spencoid2 in reply to Dazzaboy

There are side effects from radiation. Radiation cystitis, increased likelihood of other cancers long term etc. I have had rather significant cystitis which was not fun but avoiding ADT if possible is a plus :) My cystitis could have been from brachytherapy or IMRT or both? Who knows.

Derf4223 profile image
Derf4223

Dazaboy, if you haven't already, look up trials relevant to your particulars -- once you have some pertinent trial titles, mention them to your MO/RO. Also check the NCCN guidelines that apply to you.

PCa is a very complicated thing with many variations. Some people are going to survive for a long time almost regardless of treatments. Others go down fast regardless of treatments. Basing your decision on a poll of postings here is not a good idea in my opinion as the average poster is not one of those whose treatments after diagnosis result in indefinite remission. Those folks get on with their lives and think less and less about PCa as time progresses and do not post here.

I had radiation of my intact metastatic prostate and there were minimal side effects. I also went largely vegetarian and exercise my a$$ off. eg resistance exercise, aerobics, walking -- 1 hour a day of each. My hope is to bend the curve in my favor.

Justfor_ profile image
Justfor_

I share your fears regarding sRT and trying to push it down the road as much as I can. If interested in my doings, check my "Bicalutamide Maneuvers" thread.

maley2711 profile image
maley2711

There is no guarantee or certainty that sRT will provide a cure, nor is there anything but study statistics to provide a probability that you will suffer long-term serious side effects from the sRT. The folks who have had good results per PCa control and SEs will generally not post here...so you will read here mostly from folks who haven't had great outcomes.

You can Google using" prostate cancer salvage radiation results " and find many studies that will help you with probability of both "cure" and serious long-term SEs. Have you asked your Doc(s) for any such numbers..though many try to avoid that discussion, in my experience at least.

Omalley profile image
Omalley

I had RT in 2009 and ADT before that since I had Gleason 9. I had 25 Proton then 20 3D conformal I think it was, PSA is still around .3 for the whole time. I started having problems with my kidneys two years ago and in the process they found I had radiation damage to my bladder and urethas (sp). I had ureteral relocation surgery in Dec and then 30 HBOT sessions, At this point I am pretty good, I had bleeding before that caused three trips to the ER no bleeding so far now. I have a friend who had RT and it is now back so I can't say which I would do if I had it to do again but overall I've had a pretty good life. Am a Vietnam veteran and also have other agent orange problems so my journy might not be comprable to yours.

In your case depending on how old you are I would probably do RT if they thought it could get rid of it, RT side effects usually start after ten years it seems so maybe you could get ten more good years. plus I think the 3D was part of the problem, they don't do that any more IMRT or Proton is much better RT.

London441 profile image
London441

You’ve only been on ADT for 6 months. You may look at it differently if cumulative effects of the ADT start to be onerous, which they might. The side effects of RT are generally less noticeable and mostly temporary.

Your baseline testosterone, overall health and exercise habits figure strongly into your ability to tolerate ADT well.

Most men are much more concerned about side effects from ADT than RT. I had no ADT side effects at all until after 6 months.

twostrats profile image
twostrats

Dazzaboy could I ask you how often you were getting your psa checked, and what your psa was prior to the .61 psa thanks

gsun profile image
gsun

Normally if you are not metastatic you would only be on ADT for between 6 months and two years along with radiation. My brother is on his last week of radiation now and ADT for 6 months. Do the radiation add hopefully you can get off ADT.

Dazzaboy profile image
Dazzaboy

I had PSA tests annually after my radical prostatectomy in 2016. PSA was negligible, or around .01. My urologist called me in Dec 2022 and told me that the cancer had returned and it was now metastatic, at .61. I did another PSA test and it was .71. He then scheduled me for a CT bone scan and an organ scan. Both were negative . I was referred to an Oncologist who started my treatment with Bicalutamide for 30 days, together with a Zoladex injection. I was scheduled for radiation therapy after the first Zoladex injection but asked to wait, and had another Zoladex injection after 3months. In August I am scheduled for radiation, but unsure if I want radiation at all, if I can live with just ADT. My last PSA test was.01. Will long term ADT kill me? If not, then maybe I will not have radiation therapy. Praying for clarity at this point.

lowT163 profile image
lowT163 in reply to Dazzaboy

ADT in my opinion is the worst by far of things to try. I hated it while on it and not sure but think it is what killed my testosterone forever. I could be wrong it may have been the radiation but I have almost no issues from the radiation except rectal bleeding at times caused by what I eat. Good luck.

chefjlu profile image
chefjlu

I know this is hard, but fear is not an answer either. Information from different doctors give better guidance. Side effects are many times controlled through activity level, exercise and adjust diet. You do not list your Gleason or Staging from the RP. I was Gleason 9, had RP over 5 years ago - 1 lymph node showed positivity - no other treatment for almost 3 years - slight uptick in PSA, PET scan showed 1 spot in pelvic area (good as had not spread) - started ADT and had salvage RT for 2 months a little over 1 year ago. I suffered little to no side effects for RP - nothing from RT - ADT I have a mild hot flash once in a while. Activity and exercise along with diet have all been part of the way to keep them at bay.

Everyone reacts a bit differently and positivity are important. It's important also to keep you doctors informed of not only concerns by any issues. There are things that can be prescribed to help if needed.

Being free of cancer does not mean "cured". If you are metastatic "cure" is seen as long remission and reoccurrence is always out there. I will be taken off ADT in less than a year and monitoring for the rest of life will be part of my life. There are no guarantees it won't come back or show up somewhere else. Just remember, there are many men who have lived for 15 or more years dealing with this as needed.

lowT163 profile image
lowT163

what problems has your dr described of you have radiation ?

Dazzaboy profile image
Dazzaboy in reply to lowT163

Metastatic cancer, PSA .61, now down to .01 after Zoladex injection

ConsciousDecisions profile image
ConsciousDecisions

My husband would tell you he would pay a million not to have the ADT, grueling side effects for him. He was diagnosed 2 yrs ago Aggressive Cibriform prostate cancer, and another aggressive intra ductal carcinoma. However his cancer was only found in the prostate and possibly the prostate bed and a lymph glad.

He was treated with the IMRT 25 treatment, followed by a brachytherapy boost concurrent with ADT (2 yrs Eligard) He will have his final Infusion of Eligard next month.

He would tell you there were no side effect with either 25 IMRT or the brachytherapy. Only a little urgency for urination, which was addressed with medications.

But the ADT was the most brutal for him. He really tried to get the RO to allow him to skip the last treatment but we talked him out of it. So he will grit his teeth and do it one last time for me. I also wish he didn't have to endure those side effects, hot flashes, mood swings, loss of muscle mass, loss of body hair, loss of libido. The treatments side effects last for 6 months after. And I hope to have my happy husband back in 6 months.

He is a very active hard working guy. He won't stop long enough for it to consume him.

His last two PSA test results were <.01 (6 months apart). Edit: Correction I had the "less than" sign backwards.

Not everyone experiences the severe side effects of ADT. I hope you are one of those guys.

Best of luck to you.

PSAed profile image
PSAed

If you were hesitant about ADT treatment I could 100% relate to that, but RT? Not sure what you've heard about RT, but these days RT is delivered with pinpoint accuracy using state of the art technology, compared to decades ago its like chalk and cheese. This disease should be not be given any advantage and needs to be hit hard i.e. RT/HT.

Best Wishes

ElemanJ profile image
ElemanJ in reply to PSAed

At a psa value 60 ng/ml a PSMA PET/CT is accurate in showing any mets. RT without exactly knowing where the beast is, is not the correct approach in my opinion.

ElemanJ profile image
ElemanJ

PSA 60 ng/ml sounds a bit too high for reccurence. It reads more like an indication of one or more metastats. If you have not done it yet you should do a PSMA PET/CT. Then you will the exact cause can choose the optimal therapy.

Dazzaboy profile image
Dazzaboy in reply to ElemanJ

Can a PET scan show up anything if the met is really small at this stage? My RO doesn’t think it’s worth getting yet, as my metastatic cancer has just been diagnosed in Dec 22

Nfler profile image
Nfler

Mets that are extremely small with a Psa of less than .2 usually still don’t show up on psmA scan

ElemanJ profile image
ElemanJ

sorry. I misread the psa value. I read 60, but yours is 0,6. Better to wait till 1 and do a psma pet ct.

You may also like...

When to start ADT/RT given pandemic risks

suggest that starting ADT/Salvage RT would be any more successful by starting now or waiting until...

When to stop ADT post RT given the situation and moderate hypofractionated RT

months ADT if all goes well. I had Gleason 7 (3+4) in January 2020 with PSA never above 5.1 until...

Should I still have my Zoladex injection

at least 2 PSA tests before you get a clear picture on ones PC but my next Zoladex injection is due...

Should I have orcyectomy (im sure i spelled that wrong)!

to bones. Im 56 yrs. old, had 6 rounds taxotere up front chemo and am on adt, 50 mg. casodex daily...

Everyone Should Have a PET Scan at the Start and Possibly Chemo

PC progression is possible despite minimal serum PSA elevation. Indeed, 22% of our patients...