Question on 5 proton treatments with ADT

I was offered the same treatment in Sept 2022 but elected to just do the 5 radiation treatments and not the ADT because of the significant documented side effects. My cancer was isolated to the prostate too. I was on active surveillance for 10 years so I assume my cancer was slow growing. I will continue to monitor very closely the results of my radiation treatments and add additional future treatment if found necessary. Wish you peace of mind in your treatment decisions.

I had RP and ADT + Erleada for 13 months for Gleason 9, advanced aggressive PC. The side effects did make me tired, slept poorly, made me anxious ( the cancer itself may have been the anxious part), but the ADT was not terrible, and I probably will have to have it again if and when the cancer returns. I am not dreading it and for my advanced 3C stage cancer, it worked good.

How long did the side effects last, may I ask?

The hot flashes lasted 2 months after I stopped ADT and the sleep and being tired matter have now disappeared The ADT and Erleada ended 12-6-22

I am also going to do the 5 proton radiation treatments next month. I am self castrating as I have been on TRT since 2008. When I go off my T drops to 24ng/dl in 60 hours. I am doing this just to hedge my bets as there are studies showing that ADT does not offer any significant difference in anyone older than 70. No shot for me.

Diagnosed 4 + 4 in August, 2021 and chose 5 treatments of proton and ADT. Started the ADT the same day I met with my RO which was roughly 6 months before the proton treatments. Did a 4 month shot, then 6 month and back to a 4 month. Been completely off Lupron since November 13th of last year. Side effects won’t be completely gone until May. Sleep issues and feeling lethargic still an issue although they have improved. Hoping to get back to something close to normal in the next few months. I’m 72.

You should feel comfortable with your decision. Surgery was never an option for me as I spoke to several men with a negative outcome. I have no regrets with my treatment plan. Hope this helps.

Thank you for your response.

I know the anxiousness you are experiencing, I went through it all last year. I am 75 and was diagnosed in May 2022 with a Gleason score of 4+4 in two biopsy cores and 3+4 in two others. My cancer was/is confined to the prostate and a biopsy was performed after a PSA of 7.7 led to an MRI finding of a PIRADS score of 4. My cancer was graded high risk and scans prior to treatment showed no metastasis.
I decided to go with Proton Beam therapy after reading about Photon and surgery. I did not want to experience the surgery recovery and my urologist concurred with my decision and said if cancer recurred he could do surgery after radiation if that is what I would want.

In June 2022 I was given a Eligard injection of 6 month duration. This was in conjunction with my urologist oncologist and MD Anderson radiology oncologist who both said 18 months of ADT along with the 39 Proton Beam treatments showed to be the best regimen to prevent recurrence. I was also given Casodex in the beginning because Eligard/Lupron have a slight lag time before effects are felt. After appropriate lab tests showed my PSA was less than 1 and my testosterone level was also depressed, I then began the daily Proton treatments on September 8, 2022 and the only side effects I experienced were the hot flashes from the Eligard.

On November 1, 2022 I had my last Proton Beam treatment and the entire time until today I have not experienced any side effects from those treatments. I saw my urologist for a follow up in December and was given my second 6 month Eligard injection. My PSA at that time was 0.02 and my only side effect from the ADT is the hot flashes. At times I don't feel like doing a lot of physical work outdoors, (I live on 8 acres and have a lot to do), I attribute that to the winter weather and just being just plain old age and lazy. I do though still enjoy getting on one of my motorcycles when the weather is nice and going for a ride! My urologist says don't worry about the cancer killing me...the motorcycle riding will take care of that for me. lol

In June I will see my urologist, radiation oncologist and receive my last Eligard injection and hopefully from that point on it will just be routine visits with my urologist to monitor my PSA and overall see how I am doing. My Eligard injection showed start to wear off after January of 2024 and it will be after that date I should see changes in my PSA that will be reflective of the Proton therapy because the suppression of PSA will be solely dependent upon those treatments and not the ADT therapy. The studies I have read claim the concomitant use of the ADT treatment with the type of radiation chosen is the best course of action to prevent recurrence.

Upon my biopsy in May 2022 my urologist sent my samples to a lab in California for a genome assessment. The result was my genome makeup showed that I am in the lower risk category for recurrence. Sometimes someone can be low risk based on the biopsy but the genome assessment will show they are in a higher risk and sometimes the treating oncologist may advise brachytherapy after the beam radiation therapy as an added insurance against recurrence to kill any still surviving cancer cells.

Regarding the ADT therapy, based on my experience I would not hesitate to go through with it again. Yes, the hot flashes are unpleasant but based on what studies have shown I believe it is worth the unpleasant effects to possibly assure that microscopic cancerous cells do not grow and add another attack upon the cancer with whatever mode of treatment you choose. It is expensive but in my case it was covered by my insurance and as it was given in the hospital infusion center it was picked up by my medicare (I think) or by my supplemental insurance.

Best of luck to you sir and don't hesitate to ask more questions and read all you can. There is a lot of good information on youtube from reputable sites to inform you. I will recommend one that has the full spectrum of information I found helpful. If you search on youtube for "Prostate Cancer Research Institute" you will find hours and hours of information that will help you in your journey. And with all that I will say again best of luck and don't forget prayer as well.

In addition to the helpful responses you've received from members here, I thought you might appreciate seeing these related discussions with more experiences and tips:

– Anyone had the 5 treatment proton therapy for prostate cancer? https://connect.mayoclinic.org/discussion/anyone-had-the-5-treatment-proton-therapy-for-prostate-cancer/
– Starting Proton Treatments for Prostate Cancer: Any experiences? https://connect.mayoclinic.org/discussion/starting-proton-treatments/
Proton therapy: Why there are different numbers of treatments? https://connect.mayoclinic.org/discussion/number-of-treatments-for-proton-therapy/
- Proton Beam Therapy - Comments on adding ADT? Yes or No? https://connect.mayoclinic.org/discussion/proton-beam-therapy-add-adt-yes-or-no/

@llmh, have you decided to take ADT as well as proton beam treatments?