New to Prostate cancer

Sorry to welcome you to our club.

Both the European Association of Urology ("EAU") guidance, and the National Comprehensive Cancer Network ("NCCN") indicate that for high risk prostate cancer, like yours, curative radiation therapy should be accompanied by ADT with a duration of 24-36 months (EAU) and 12-36 months (NCCN). Both agencies offer that comorbidities enter in to the decision regarding length of ADT.

You may want to consider Orgovyx as an option for your ADT, Orgovyx is a daily pill, the advantage of which is being able to stop taking the pill and having your testosterone return in a relatively short period of time as compared to a Lupron injection. If you choose a shorter term of ADT of it will likely have some benefit, just not the benefit that the standard of care would provide.

As patients and cancer survivors we must educate ourselves, advocate for ourselves, and in consultation with our doctors arrive at a treatment plan we are comfortable with. At that point hindsight and second guessing is not allowed. Move forward hoping for the best and ready for something less than optimal.

I was diagnosed at age 68 with one core 4+3, and one core 3+3. PSA was 7.8, and Decipher was .82. I was intermediate unfavorable. I was treated with 5 fractions of SBRT with a total of 36.25 Gy and a focal boost to 40 Gy at the primary lesion. I took Orgovyx for 6 months. I purposely lost 7 pounds prior to the Orgovyx and went to the gym 5 days a week doing cardio and weights. Additionally I walked 18 holes of golf twice a week. I took a calcium and Vit D supplement, and essentially stopped consuming alcohol. The SBRT was easy and the ADT was manageable. I did have some minor hot flashes from the ADT beginning on day 40. Additionally I had muscular aches generally in my arms. I chose Orgovyx for its quicker reduction and return of testosterone. Additionally while I had no intention of stopping my ADT, having the knowledge that I ____could____ and that I made the conscious decision to take the pill each day gave me some modicum of control in the otherwise out of control treatment world.

Two years later I have very minor side effects from the SBRT , my testosterone recovered (within the first two months post ADT) and my PSA is within an acceptable range.

All in all compared to others with various cancers I have had an easy ride.

Know that you will receive support in this forum. Also consider other forums such as https://www.inspire.com/groups/zero-prostate-cancer/discussions/ ( My username there is Toolbelt)

https://healthunlocked.com/prostate-cancer-community/posts (My usernamet here is ToolBeltZia )

https://www.reddit.com/r/ProstateCancer/new/ (My username there is Tool_Belt

If you like search for me in those, and this forum, for posts I have made about my journey.

Stay Strong Brother, We Got This.

@toolbelt TY for your advice and support, will look into Orgovyx w/ my Onc.
#RockOn

@csimadera1 I think @toolbelt gave you excellent advice. Orgovyx is the way to go; it does the exact same thing as Lupron but has a much gentler onset - your T gradually drops A LOT in that first month but without the horrible wallop of Lupron.
Also, there is new thinking on the duration of ADT necessary for successful treatment; and you can search discussions on this forum.
Nothing wrong with 6 months of Orgovyx and then monitoring PSA closely. If it starts to rise, simply go back on ADT. Your RO should have no problem with this but remember, many docs use their trusted ‘recipe’ no matter what new research uncovers. So you may have to be a bit more forceful than would seem polite… Best,
Phil

@heavyphil Thank you Sir, I appreciate this welcomed advice. I have no trepidation in regards to radiation, it's the ADT that has me somewhat concerned.
Praying for all in this support group as the fight the good fight!

I m 77. I handled ADT for 28 months. Took a couple naps/day, a couple hot flashes too. I handled it starting at age 74. Today my PSA has been less than .01 for over a year now. Had 28 RT treatments too. Come on guy, don’t be afraid of ADT. It worked for me with metastases cancer to the lymph nodes/ seminal vesicles. You can handle it. I did. I m older than you. Be tough/ strong.

Consider low dose radiotherapy [LDR/ interstitial radiotherapy/ aka 'seeds') It is a misnomer using the word low. Once the titanium seeds are implanted they emit radiation for weeks to months. This is an optimal dose for killing cancer cells. External beam radiation therapy [EBRT] of various stripes, whether SBRT (e.g., Cyberknife) or Moderate or standard IMRT cannot give the same dose as LDR (not HDR) brachytherapy. Biophysics limits the safe amount that can be sent through the healthy adjacent tissue. 'Seeds do not have that restriction. Finding someone who has the experience is not easy as few urology residencies provide the training at a level to acquire competence needed to effectively use it. What I learned about this subject stem from watching professional grade videos produced by the Prostate Cancer Research Organization [PCRI, org]. Their comments are at 'arm length' from any technology or medication approach. It is derived from 20 plus years of clinical experience of a medical oncologist who chose prostate cancer as his almost exclusive practice.

Similarly at 65y, I had localized, 7(4+3), PSA of just 7.976. I had 28 sessions of proton radiation (during April-May 2021) + 6 months of ADT (Eligard).

Your Gleason 7(4+3) is considered intermediate-unfavorable; but your PSA of 59 might bump you up a level to high-risk (which might explain the 2 years of Lupron). You might ask your doctor if this was the reason for the 2 years of ADT. (If that was the reason, I would do the full term.)

Because of the metabolic side-effects of ADT, most of the side-effects of can be minimized/avoided with resistance-training exercises. There has been much reported on the physical benefits of exercise while on ADT. Here are just a few that I’ve bookmarked:

> Drs. Sholz and Moyad talking about exercise and hormone therapy: https://m.youtube.com/watch

> A paper on The Benefits of Exercise During Hormone Therapy: https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/55cb7275e4b0d97ae7ff60af/1439396469154/The+Benefits+of+Exercise+During+Hormone+Therapy_Insights+August+2015_PCRI.pdf

> A study about the benefits of exercise to counteract the adverse effects of ADT: (They describe a good resistance-training program): https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

If you do what it takes to minimize the side-effects, you’ll do very well with the hormone therapy - it’ll just be an annoyance.

@ecurb I still work and plan to continue working, it's how I'm wired. So I have to take my life style into consideration. I'm not "afraid" of ADT, don't want to deal with the "hormone hell" along with my insomnia & anxiety . . .

@brianjarvis Thanks for the reply, while not 'athletic" I am quite active, 4 mile morning walk, 2 mile late afternoon walk, every night I play Wii games, golf, bowling, swinging bat to stretch and mix in 10 pushups x 9 sets, then I ride my stationary bike for 35 minutes so exercise is not an issue for me. I hope ADT allows me to continue my activities, my wife and I are also active in the bedroom so we are preparing for that issue as well.
Thank you for the support #RockOn

You appear to have been diagnosed as "high risk". My case is somewhat similar. The way the docs describe my case is

"PSA 7.7, cT3b, GGIII (4+3), 5 of 12 cores, biopsy proven seminal vesicle involvement, no PNI or EPE. There was "no evidence of metastasis" on the PET scan, but the report stated there was "no prostate uptake" of the radioactive indicator.. My doctors agree my case could be described as "localized", but they usually call it "high risk".

The "high risk" means it is common when a case appears localized like this, and hence there is a good possibility of long term "cure" or remission, that the cancer may have already migrated undetected to distant areas of my body, or it soon will. So they want to hit it hard, and they try to minimize how hitting it as hard as they do will have on our quality of life. It has to be stressful to inflict such suffering on people who otherwise look and feel healthy, so I suppose it is natural for them to try to minimize what is bad for us in what they do.

Don't believe the voices you hear that prostate cancer is just an endless roller coaster that never ends. Many patients are treated once and no amount of monitoring finds cancer for the rest of their lives. Old age is incurable. Prostate cancer often is.

My radiation oncologist (RO) appeared to have no doubt in his mind that my treatment would be what is prescribed for you, i.e. external beam radiation therapy + 2 years of ADT. I agree with you that its the ADT I'm most concerned about.

So, I don't know what you should do. What I am doing is researching to find out if this RO has recommended what is best for me. I don't think he has. I've presented evidence to him and he has scheduled an appointment to re-evaluate my case.

The type of thing that impressed me:

A presentation by Dr. Nelson Stone at the 2024 Prostate Cancer Symposium "Radiation Dose and Hormone Therapy: How much is Enough?" This guy has been banging on about this for many years. The organizations that set the guidelines, such as the ones your RO and mine followed when they sentenced us to 2 years of ADT, take time to change.

Eg: on a relatively minor point. This guy published in 2013 saying he had discovered that gland size was not an issue when considering patients for brachytherapy, and it took until 2022 for the Europeans to change their guideline, and the US has not changed yet. My RO initially rejected my request for brachytherapy boost on the grounds my prostate was too large. I pointed out this guy's research, what the Europeans did recently, and I expect him to change his mind on that point or I'm heading off to somewhere else.

An article that restates what Dr. Stone is saying was published by Manuj Agarwal in the ASCO Post last year: https://ascopost.com/issues/march-25-2024/brachytherapy-boost-may-decrease-the-duration-of-androgen-deprivation-therapy-for-high-risk-prostate-cancer/

It took me a long time to figure out what these oncologists are talking about, enough to gain a minimum level of confidence to disagree with the one I'm dealing with.

I always understand that I may not have a clue about what I'm talking about, and in any discussion with a professional, all I do is point to the most highly regarded guideline setting organization, or the most highly regarded researcher, or the most highly regarded practitioner that I can find who is saying something otherwise.