ADT alternatives?

That would basically depend on your financial situation..Insurance companies follow and pay for the standard, accepted treatment which in your case is ADT..If you wish to stray from that path, your insurance will balk...Most of the advanced drugs and treatments like Zytiga, Xtandi, Provenge are very expensive...You might talk them into approving chemo but now you are talking about a treatment that comes with nasty side-effects that equal or exceed those caused by ADT....

I know what you are looking for, some miracle treatment that will cure your cancer but leave your lifestyle untouched...Sorry, but that's not how this game is played....Best of luck to you..

If your Urologist is still your lead doctor, time to consult with a Medical Oncologist who is much better equipped to manage your cancer..

Fairwind,

My little family is already piss poor.

VA is my only option, and not really looking for anything... just trying to learn what I can.

I remember reading, back when I was first diagnosed that San Francisco had a good VA hospital to treat advanced prostate cancer, but sure as hell can't afford to live there. We're barely scraping by, living in a double wide in the Arizona desert with no AC-


I was thrilled to get radiation from the VA as primary treatment, and feel very blessed for it... but now my future is in question.




Thanks for the post-

Post Edited (vaportrail) : 9/29/2016 8:27:36 PM (GMT-6)

Hey vaportrail, thanks for your open thoughts. That's what this forum is for, since we don't usually have anyone else we could say such things to, let alone people who completely get what you're saying. We do, many of us do.

I was on hormone therapy for three years, lost libido, lost all interest in sex, lost ability to a large degree. This disease sucks because it directly attacks our sexual nature, and sex for us men is a core part of who we are. Have you talked to the your wife about this? You may be surprised to find she's more interested in your survival and companionship than you may know. It's a scary time, a scary conversation, but honestly my wife and I became much closer through all of this.

For some, the physical aspect of marriage is everything. However, if you've been together for a while, maybe many years, there's typically much more to the relationship. It's disappointing for sure, but as a "new normal" you may find it's not as bad as you're fearing.

You can safely share true feelings here, like nowhere else I've found. Even live face-to-face support groups aren't as easy, given a little anonymity we maintain here through our screen names. Many of us have met in real life, and I count some of these guys as an extended family. In fact, we're in Rochester, NY this weekend for another gathering of some from this forum. It can be life changing to spend a couple of days with folks just like you!

One other avenue to consider, you can start ADT later too. Starting immediately, vs. waiting, are two different strategies and both are options. You may get a helpful link from our forum technical expert, Tall Allen, about when it may be better to treat early or late. But, even starting later doesn't mean you're just giving up. It means you have a plan, based on specific criteria. Did you talk about that possibility with your doctor?

Thanks so much for such a thoughtful post, redwing...


I'm just really down right now.


Of course I've been trying to tell my wife, and others that I consider "close friends" about what's going on, and my possible prognosis... But as soon as people hear "prostate cancer", it's like they want to dismiss me as being a lazy ass, with nothing really wrong with me.

I've been on disability for years. Had a broken neck, and several other major broken bones that still give a lot of problems. But to meet me on the street, there's "nothing wrong with me".

That being said, chronic pain, fatigue, prostatitis/epididymitis are my biggest issues at this time.

Unfortunately, radiation doesn't cure prostatitis. Why does your Uro think it's a clinical recurrence of the cancer rather than a relapse of your chronic prostatitis? What kind of PET scan did you have? Is the prostate inflamed and tender to the touch? I have a suggestion you might want to think about and discuss with your Uro - try Casodex for a few weeks to see if it drives your PSA down. If it does, it's probably a relapse of the prostate cancer. If it doesn't, it's a probably relapse of your prostatitis. It's only committing to it for a few weeks - you can decide later what you want to do about it.

Hi Allen,

My uro at the VA fingered me, and my prostate wasn't sore when he pressed on it. So according to him, it's definitely NOT prostatitis. I asked for more information about the scan, and all I was able to learn from the VA tech, was it's a PET-CT.


Good idea about the casodex. I've never heard of using pills like that to diagnose a recurrence. I might have to try it some day.

Vapor trail
If you look at my signature you'll see all the things I'm taking in addition to ADT triple blockade. In addition I do heavy resistance training and aerobics. This I found to be very helpful to restore strength, endurance, and emotional well being and reduce muscle pain. These were my worst side effects if I don't count complete ED. When my RP and SRT failed I had RT to all pelvic lymph nodes because I wasn't willing to surrender to lifelong ADT . Maybe you should think about getting scans like I did to locate your PCa , Mine was in two iliac lymph nodes so I had all pelvic nodes radiated but I also had ADT3 for 13 months because it helps radiation work.
You are not giving you or your family a chance by refusing ADT. If you use the estradiol patch changed twice weekly you won't have hot flashes or night sweats. You will lose interest in sex while on ADT because your testosterone level will fall but that's what PCa feeds on. It really is cruel to get this disease at a young age when you're sexually active. Believe it or not my primary goal when I was diagnosed was to not lose my ability to orgasm and I was 69! And I don't have a wife who wants sex! I fully understand your desire to have sex particularly if you have a desirable wife. TA's suggestion about casodex sounds like a good play as you need to get rid of the prostititis or whatever is causing painful orgasms. Then you should not be afraid of ADT for a year or so plus more radiation if PCa is in your lymph nodes.
Bob

Michael_T

Good question. I probably confused readers. My bad! I had ED for many years prior to Dx For PCa due to the meds (finasteride and tamsulosin) I was taking for BPH. I was able to get a weak erection but had lost penile sensitivity. After RP I could not get an erection but I could have an orgasm with lots of work if you know what I mean😰! I used a pump but was not very successful with that. During SRT while on lupron I neither cared about nor even tried to get an erection and my member had shrunk so much it was a joke. Then with my second shot of SRT to lymph nodes plus ADT 3 basically finished me off. Now when I dream of sexy subjects , I dream that I have a big erection then when I reach down there .... nada!😢. At this point I don't believe I can ever regain potency. An implant is probably the only solution. Not sure it's worth it at my age and my wife of 47 years sure doesn't care. Having me alive as long as possible is her only concern and that's my goal too! Lol
Bob

Well I can tell you that being a bachelor at 58 and only being married a total of 3 years in his life, that the sex deal is important to me. It's difficult to imagine....just what my life would look like had the drive for sexual relations not been as big a part of my make-up (psyche') as it was. Something so intrinsic, so in=born, the desire to mate.

I won't say it's "life or death" (yet)....(still hope)....but, I will say it's (sex, and the drive to connect to the opposite sex in the most intimate of physical ways) It has [played a large role in the way I have/(do) view the world, my interests, my decisions, my motivations, etc.

It's even played a part in just "normal relations"....as....normal relationships become colored by my "abnormal" ability to connect with the opposite sex. I used to think Freud was a nut case (still do), but I'm not sure Freud so wrong now....Sex has helped to shape my life. It was (is) a not so small part of what has motivated me. And it's a huge part of who I am (was?).

(I put surgery off a year.....I knew it then....I knew how important this sex thing was to me then. No small part of my identity and motivations).

(my credentials for this post isn't about stayin' alive, it's about having medical proceedures in lieu of my sexual self). (I have a positive margin of what they say here is 5mm. "The studies show...." that my cancer will come back. (statistically speaking). I also have a stricture in the urethra. This hurts. The "cure" (there's not one) ain't no walk in the park either. (Imean unless you're into that sort of thing. Which I'm not). And radiation.....blah blah blah.

The only time this site looked GREAT to me was when I thought I might have pancreatic cancer. I looked on that site and then this site.....I'd think to myself...."I wish I had their problems". (I do)

Well, I don't have pancreatic cancer.

so I've got the details of my life to contend with. And while I don't like it, it still beats the alternative. (at least to this point)

good luck

Island time
You're pathology looks comparatively good. Your numbers are great. I wish I had had them post RP. I know the positive margin bothers you but everything else looks fine. Hopefully you'll recover full potency, have no recurrence and can avoid ADT and SRT. For your sake I sure hope so. Good luck!
Bob