I sought out various treatment options but was put off by potential side effects. I very much wanted to keep my sexual function. I looked into a photodynamic therapy in the U K as part of a clinical trial but my tumor was too close to a sphincter to do that. I did not qualify.
Eventually I chose external radiation without hormone treatment. I just could not stand the thought of losing capability for intimacy so I refused ADT.
After the radiation I pretty much forgot about it all. I rarely saw a doctor and did not check PSA until last summer. My PSA was 34
This led to all the scans...MRI, bone scan, CT and PET scan. There were some areas of concern in the prostate area. The PET /axumen scan did not show anything definitive but there was a comment about my sternum. The person reviewing the images wondered if the had been "instrumentation" None of the imaging indicated any spreading.
Of course, my urologist suggested ADT. I did not want that at all.
I found a clinical trial in Finland that was using transuretheral MRI guided HIFU. I visited the hospital in Turku and they gave me an MRI and PET scan. An MRI guided biopsy was scheduled. When I presented at the office for the biopsy I was taken in and shown the images from the scans. the PET scan showed lymph nodes lit up as well as a larger tumor on my sternum, as well as lesions in the prostate area.
This kind of floored me as the imaging done in the US did not show nearly as much. I asked how their equipment could see so much more that what I had in the U S. I forget the entire response but I think it was due to better equipment and/or contrast agents.
So, now I need to figure out what to do. I dread the thought of ADT more than I can say. I am not sure if I can bring myself to do it but I know it is likely my only treatment option.
Jeff
Jeff
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ADT is not a cure, but it is the only reliable “holding” action we have now. Prudent to start it while you educate yourself to other possibilities.
As for the sexual side effect of ADT, I had no idea how much my wife really loved me until this happened. I would do most anything to get back to being fully functional, but this disease did not threaten or impair a relationship
Do you remember Dr. Scholtz's book, Invasion of the Prostate Snatchers... He spoke about a scan that was superior to what we were using here in the States. I believe it was from Finland, it seems, if I remember one of the Nordic countries. He spoke about the FDA nixing it. I'm not sure if I have my facts right. Do you know what happened to that scan, if you are familiar with what I am talking about? Your response to Jeff jogged my memory of this. Thanks
I didn't read it, but perhaps he was referring to the Combidex scan for pelvic lymph nodes available only at Radboud University in Nijmegen, The Netherlands.
Hello Jeff, sorry you find yourself here...When you were first diagnosed, what was your PSA and Gleason score at that time ? Check in with a good Medical Oncologist. Talk about a multi-mode treatment, ADT, Chemo and Zytiga all done together..Or try to find an imunotherapy trial that will accept you ....If you think ADT will have a profound negative effect on your sex life, wait until you see what dying does to it.......You have survived for 12 years, a gift really, more "good time" than most of us get...Now is not the time to walk away from your best treatment option....
First of all, any treatment based on attacking specific tumor sites with radiation will almost certainly fail to cure you of prostate cancer. When your prostate has already been treated with surgery or radiation, the great majority of the PSA you're seeing is coming from sites outside the prostate bed and they are most likely quite dispersed. That may not be true. It's possible that your cancer is in just a few sites that can be treated and cured. But that's very unlikely and any attempt to try that approach is likely to do as much or more harm as good. I think that any oncologist, and pretty much all of the experienced people on this site, will tell you that systemic therapy is necessary and that ADT is the best and least side effect prone of the currently available systemic therapies. It may work anywhere from a few months to many years depending on the specifics of your cancer biology.
I understand your desire to preserve sexual function. In that regard, it would be useful to know your age. As we get older, our sexual capacities decline anyway, whether we have treatment or not. We get ever closer to an age when our ability to have erections and ejaculations are both degraded. If you are reaching that age, the sacrifices you make to stay alive won't be as great as they would have been, say, in your 50's. And, of course, your ability to have sex will vanish once you begin to experience the severe symptoms of cancer, which is another argument in favor of ADT treatment.
Personally, I do not believe that ADT means the end of sex. In my experience, it initially meant only the end of libido. I could look at a beautiful woman and recognize that she was beautiful, but wonder why that was once significant to me. My desire for sex was nil, but I occasionally did it anyway. I still loved my wife and didn't want to deprive her of our physical intimacy. So I did the things that she liked that would lead to her gratification. However, to my great surprise, her arousal brought about my arousal. I got excited, got a surprise erection, and had sex in the normal way. Eventually, my potency declined and normal intercourse was no longer feasible (though drugs can help), but I continued to take great, I will even say intense, pleasure in satisfying my wife.
Physical intimacy is in the mind as much as it is in any part of the body. You don't have to give up your life to cancer in hopes of maintaining it. It will change, but it doesn't have to die. You have made great efforts and great sacrifices to preserve your sex life. Now it is time to make great efforts and sacrifices to preserve your life and your love relationship(s).
Life is hard. Growing old is tough. The end is inescapable. But we knew that when we were young. Now we have to preserve our courage and our resolve to accept what happens and make the best of it all the way to the end.
I recommend that you find the best oncologist you can and begin the treatment that he recommends.
Amazing AlenMyer! I love your perspective . I’m happy that you have thatwondrtful strong love in your lifelike I do.. we are fortunate in that respect.. Thanks for posting.. You lift us up!💪
Great great post! I will add that I had a penile prosthesis installed. An AMS 700 pump jobber, state of the art. For me my desire is horribly low, but there is no stopping 30 years of lust for my wife. We get it done fairly regularly and she is happy. Me too. Not sure where we would be without it actually.
Always an option if they gut you like a deer like they did me.
If its localised then why not remove the prostate?
What about chemo with docataxel as that is likely to have an excellent response. ADT as mentioned is about a holding position and after all these years a PSA of 30ish isnt bad. You didnt mention your age but I think your next steps should be about you and longer term survival. Sex really is secondary and you can have tadalifil or other options.
my psa went to 5.7 nov 2008, then i went for a biopsy found 7 out of 12 gleason scorfe was 9 and the other was 8. went in for a lupron/eliguard shot in march 2009 by june my score went to 8 so went with the radiation for 38 days and for the past 3 yrs i had a score of .02-5.0 and back again. i've taken every pill and treatment such as zytiga and finally with out having the zytiga my psa went to 28,30-60. got another lupron and brought to 30. working on finding zytiga thru cvs pharmacies. also took the new treatment called PROVENGE. I found out if u got cancer then waiting isn't the smartest thing to do u have to be aggressive and thats what i have done for 10 years. i read a'lot on the computer and do my own treatment not a oncologist thinking. its my body and all bodies react differently to each person.
Agree that treatments are confusing and side-effects worrisome.
But you made the choice of not following professional treatment suggestions and the consequences are not good for you ... am sorry.
I told my cancer team that I wanted the most “aggressive” intervention or treatment. Everything was on the table, and I let them from research, out-come, experience, and statistics procede to treat the cancer (as I didn’t want to die, and wasn’t able to make the best clinical decisions).
Many options were considered ... with choices nothing was refused ... we proceeded with the selected protocol.
Hi Jeff our choices are limited but the alternatives could be deadly.
I've been in Zytiga for 9 months now and side effects were pretty uncomfortable at first but in time have subsided to almost none.
It's very true about the sexual feelings being diminished but having the choice to live far out weighed the alternatives. I have a great wife who has stood by me all the way and we still have intimacy but not on a grand scale. Our love for eachother is much stronger than ADT. Plus there is help with E D should that be as troublesome as it appears to be for you. Please take the time to research your options and make an educated choice to stay alive.
My husband has been walking in similar shoes. We have also gone overseas for treatments. Check out Dr Weber at Klinik Marinas and currently we are seeing Dr Nezami in Newport Beach, Ca. YouTube him.
Xtandi or Casodex monotherapy may be worth a look-see
You have followed a unique plan of treatments up until this point.. No-one wants adt or castration . It might come to just that now for you . 12 yrs since dx with sex has been good for you I assume ? For me it was life or death.I had no choice. I had a specialist and he called the initial correct moves to put me clear for 3 yrs now. Do I think this will last forever? Hell no! I’m a realist. Sex has just been an afterthought for me for four years. I was somewhat of a sex addict prior PC .. I chopped my nuts off 9-16. Still I have wood all night every night.. That doesn’t translate into sex with my beautiful sexy wife because she’s in menapause her self and has 0 sex drive.. What kind of sh@@ it that.??? Im not so patiently waiting for my sweetheart to feel whole again . Since I’m able now , I hope she lets me in before I have a reaccurance with chemo or other stuff that could put the nail in erections. For me then ....I am alive and not suffering tremendously right now, just all of the normal side -effects of no “T”. If not for ADT most of our members including myself would not be here today.. Love life and live healthy !
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MR-IGRT, or MRgRT, commercial name MRIdian by Viewray
Vacation from Lupron/Zytiga - Temporary or Permanent!
Is surgery, radiation or Lu-177 therapy appropriate for my case? 
Wondering where this is headed....rising PSA and bone mets
Possible SBRT on prostate and lymph nodes?
