battling prostate cancer

[sunhine]

got gleason score of 9 psa 9

and urologist want to do hormone therapy with radiation

I do not want to do the hormone therapy

[spinosa]

but, it helps with the radiation...

[YostConner]

Hormone therapy is likely to extend your life.

[SeosamhM]

This is your journey, Sun, and quality of life certainly weighs into your personal decisions. To say that ADT (Androgen Deprivation Therapy... "hormone" therapy isn't accurate...it's more accurate to say "anti-hormone" therapy) does not affect your quality of life would be a ridiculous and evasive statement.

But Yost is right, and more to the point, ADT IS THE TREATMENT for PCa, which cannot yet be cured. Please, do some research. It is easy on this site. I'm a very smart guy, but there individuals here that I unhesitatingly call experts. Tall_Alan and Nalakrats are good places to start - these two men often have two very different approaches, but they are a wealth of information.

Believe me, Sun: I feel for you, I feel for me, I feel for us all. There is still life in us and things to do. Stay with us, brother!

Also, please look into a local face-to-face support group - specifically for Advanced PCa if you can get it, since we face some very specific issues. I can guarantee one thing, Sun - one thing that you don't lose is your sense of humor with all of this... there are not only intelligent people here, but a whole lot of funny ones (....even if their jokes aren't!)....

Good luck! - Joe M.

[j-o-h-n in reply to SeosamhM]

j-o-h-n <===== looks in mirror, jokes fall flat, guess it's me....

Woman looks in magic mirror and says mirror mirror on the wall, who's the fairest of them all? Voice from the mirror says "you are, sir".

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/13/2019 2:34 PM EST

[Tall_Allen]

Who wants to do it? For men with your diagnosis , the best results have been achieved with brachy boost therapy. This means whole pelvic external beam radiation with a brachytherapy boost to the prostate. The total radiation dose is so high that hormone therapy may not be necessary with it:

pcnrv.blogspot.com/2018/03/...

pcnrv.blogspot.com/2017/12/...

Now, the kind of brachytherapy used may necessitate the use of hormone therapy. There are two kinds: (1) high dose rate brachytherapy (HDR-BT) or (2) low dose rate brachytherapy (LDR-BT). LDR-BT (or seeds) cannot be done if the prostate is larger than about 50 cc. if it is, hormone therapy can be used before the seeds are implanted to shrink the prostate. That's why, in the following randomized clinical trial, everyone got 9 months of hormone therapy before the seeds and an additional 3 months while they received the external beam part of the therapy.

pcnrv.blogspot.com/2017/03/...

HDR-BT can be done on almost every size prostate, so hormone therapy may not be required with it. The downside is finding a practitioner - not a lot of radiation oncologists are proficient with this technique. It is possible to have one doctor do the brachytherapy (which only requires a single visit) and another local doctor do the 25 external beam radiation treatments.

[Hidden in reply to Tall_Allen]

I've asked you before, if there's no evidence of "distant" metastasis, just extensive pelvic area disease, is brachy-boost-therapy viable?

[Tall_Allen in reply to Hidden]

I think that whole pelvic radiation with a brachytherapy boost to the prostate and about 2 years of ADT gives someone with known pelvic lymph node involvement (and no other metastases) the best chance at a cure. I can't prove that yet.

[Hidden in reply to Tall_Allen]

Ok, I'm not looking at a cure, but, if this can reduce the tumor burden, hence add OS, is my motivation. As you may remember, my spine biopsy was negative for cancer cells.

I've asked this question to Dr Pomerantz, he replied, my tumors were large and evaded the bladder wall, thus metastasis beyond pelvic? Although, my recent MRI findings:

"There is significant metastatic retroperitoneal and pelvic

lymphadenopathy some which appear to be necrotic."

So, does this clarify beyond pelvic?

[Tall_Allen in reply to Hidden]

A tumor that has grown out of the prostate and is invading the bladder wall is T4, not M1. They are not metastases. Are the affected lymph nodes all in the pelvis?

[Magnus1964]

This could be a defining moment for you. The radiation plus HT could knock your cancer into non existence. What hormonal treatment is you doctor recommending?

[Claud68]

Hello Sunhine! My husband and me, we are like you. We decided to try the Lu177 PSMA therapy in Austria. My husband has also a Gleason score 9. The first of probably three injection will take place in two weeks, after the positive Ga PSMA Pet-CT in January.

[26golf]

This is my first post. I have 5 4 Gleason 9. It snuck up on me as previous biopsies were 3 4 7. I went from watching to research of all pertinent articles and discussions with top people at City of Hope and elsewhere. Spoke to several radiation oncologists and a top ranked surgeon. i was even presented at my hospital of choice. Opinions varied but I came away believing one expert that if I had surgery my chance of needing EBRT would be 30% after surgery even in the best of hands. Just to know I have 2 lesions in the prostate one 9 and one 7. My PSMA was negative outside the prostate. My PSA was 5.5. I elected to have ADT with at first Zytiga and then Yonsa. Studies are inconclusive that without metastases I would need that potent a drug which also shuts off my adrenals which some cancers use to make testosterone. I supplement with steroid. I have also started after 3 months of suppression, EBRT[external beam] I will get 25-28 treatments and then Brachytherapy. I will be suppressed probably for 18 months unless later studies suggest otherwise. I wanted to increase my odds the best I can. I am 72. I work full time. Side effects so far have been some fatigue, lots of hot flashes and increased urination. Other than that I am lucky to still work, go to the gym and play golf.

[Jimhoy]

Where as I can agree with your apathy towards ADT because it kicked my A$$ six ways from sunday, I was told by both my Urologist and my Oncologist (unprompted and separatelly) that it’s thought to add about 10% to your sucess rate! So ask yourself, do you want to be the extra 1 in 10 that is helped!! I did and I also used that fact when electing to go full term with my 18mo treatment when considering pulling the plug at 10mo’s.

The one thing I did not know until very late (upon finding sites like this), is if it is taking too much of a toll on your quality of life......just stop it!!!! Or take a break!!!!

Best of luck

Jc

[Don_1213]

I don't think any of us want to do hormone therapy. It certainly isn't anything I ever aspired to do - but most of us do it. Why? It's shown to be lifesaving.

The fact that your urologist suggested radiation and ADT (hormone therapy) to me means you're probably similar to me. I'm a G9 (5:4 or 4:5 depends on which read of the biopsy one wants to believe) with some other issues (high-blood pressure, peripheral artery disease, and a few other "comorbidities".) Because of that - both my urologist and the medical oncologist suggested I see a radiation oncologist and get radiation and ADT.

You'll see fans of "brachy" here - it's a good technique - but it may not be that good for you. It's still invasive and is very much dependent on the skill of the practitioner. There are recent studies showing modern (and I'll repeat that MODERN) IG/IMRT radiation treatments + ADT equal even in high-risk cases to brachy/radiation/ADT. The studies that showed brachy/radiation/ADT as the "best" treatment are based on older radiation techniques and doses, and may have some selection bias as far as the patients studied (the issue that radiation-ADT is generally recommended to people with comorbidities that make even brachy - which is invasive - risky.)

Anyway - I think your uncologist is giving good advice. He's a surgeon recommending you don't do surgery. I'd also suggest you do talk to a radiation-oncologist and a medical-oncologist. And if you want links to some studies done on radiation/ADT - let me know and I'll dig them out and pass them on.

BTW - some of us have minimal side-effects from ADT. So far mine are.. if that changes I may rethink it - but I think exercise is the key to keeping the side-effects at bay. It seems to be working for me.

30 treatments out of 45 IG/IMRT down..

[Hidden]

Your husband is an adult and any decision he makes is right for him and not for others to criticize. However, we all would like to see him research adjunctive hormone therapy before he makes his decision; especially with a Gleason 9.

Gourd Dancer

[Hidden]

Have you had the CT and bone scans? What are they telling you? If confined to the prostate maybe HIFU could be an option. ADT, even a 3 month shot, will help shrink the prostate and make radiation or HIFU more effective. ADT can be discontinued in some cases. It provides a benefit that shouldn't be avoided.

[monte1111]

I didn't want to do hormone therapy. I didn't want to do chemo. Didn't want to do xgeva, zarzio, xtandi, prednisone or dexamethasone. Didn't want or need the 4 anti nausea drugs they gave me. Imodium was my friend. I'm sure I left some of the usual suspects out. Oh yeah, one of my favorites the enema. Also ciprofloxacin and bactrim. X-ray, CT scans, body scans, monthly blood draw, get to do that Friday. Who could ever forget the prostate biopsy? I am determined that that will be a once in a lifetime experience. Oh yes, the DRE's. I've had 5 in the last 2 years. Starting to get suspicious. A list of most but not all from the last 2 years not including side effects and etc. Your journey may just be beginning and if you are not sure I would get a second opinion. From a doctor. You and others who are already biased don't count. I wish you the best of luck.

[j-o-h-n]

"I do not want to do the hormone therapy" So don't.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/13/2019 2:39 PM EST

[duckman52]

Good morning sunshine, I did not want the hormone therapy also for many reasons. I am fond of my testosterone, that being said my Doctor who is a Hematologist and Oncalogist made it clear that if I chose not to in his opinion with in a year the cancer would do a good job of getting into the bones and I would not be a happy camper. I was motivated not to by the fact my wife of 35 years left me and Iwas sur that not many available hens would want to be nesting with a rooster who didn't have the ROOST! better judgement and fore sight brought me to a compromise. I am doing 3 months on and 6 weeks off. We will see how I fair. Being off 6 weeks was great, just got my shot Friday. Life is good. Peace Paul