Latest PSA and Some Input Needed

Susan-
I started to write...deleted....wrote more..deleted more...so I am going to think about this and come back. My father already wants a break from HT and it has only been six months. I can only imagine how he is going to be at the 2 year mark.
I need to check, but I feel like I remember reading in Snuffy Meyer's book about intermittent HT. Have you checked it out?

Hi Susan,

A very quick note to say "ÿippee" about the PSA! Hope you can get all the info you need here about the HT - great news on the latest report - keep in touch & warm regards to Don. Lana & CJ

Ok Susan, so after some thought and review of the recent guidelines, my conclusion is this:

Well controlled IHT studies have not been complete, therefore, most doctors probably won't recommend IHT. There is no clear protocol with HT, so then, what do we know!? We know the long term side effects of HT. We know that HT is working right now for Don. We also know that there is absolutely NO way of knowing if IHT is better or if continuous HT is better in his particular case.
My heart is torn because I feel like Don's PSA has now been undetectable for a year! Yahoo!!!! That is the goal right!?! I know we all obviously want to keep it there, but only Don knows how he is feeling and how much he can tolerate. The question is, how long of a HT vacation does he want to take....indefinitely...until his PSA reaches a predetermined point!?! These are things that I am sure you are taking into consideration. I just hate that his PSA had jumped so high post RP. It wasn't like .08 to 1.0, if that was the case, I would feel a little different, but I would still be scared. I'm obviously speaking as a concerned friend, not an expert.
I know we are going to be weighing these same options with my father in a year and a half and hope there is more data by then. Until then, once again, we have to do the best we can with the information given and remind ourselves that there is no black and white with PCa. It's all gray!! ugggghhh!! I know I'm probably not helping, but unfortunately, I don't think you are going to get any straight answers, just a lot of support regardless of which decision you guys make. I just hope that you are both able to find peace and hope in whichever path you decide and don't look back.
Always pulling for you,
Chayna

Thanks for the feedback.

Doting - I appreciate your position since your Dad is going through this also. As a woman the only way I can relate to the side effects of HT is what my husband tells me, what I read on line & some of the men's posts here. Esp. Jim's regarding depression and the responses he received from some of the men suffering from the same symptoms.
As with anything, I can have factual knowledge and see the results BUT I'm not living the experience.

Dale - You've mentioned your T level as being too high and I can see where that would be an issue since the goal is to have that bottom out. Don's shows as <20.

Karen - I've understand Snuffy's (husband having a hard time getting past the nickname method of treating pc and have been given that some thought. In reality it's something Don would like to do but of course there is some fear associated with making a break with something that's working right now. I believe he'd feel much more comfortable with his own doctor's approval.

Lana - I so appreciate your good wishes, thank you.

What I'm hoping for is someone here to give me first hand info on their results with IHT - it must not be too common a treatment. The fact that Don's cancer spread the way it did - systemic - may make IHT a bad choice for him.

His doctor will be back from the conference this week (maybe he'll have some new info on pc) and we'll talk to him then...I'll let you know what happens.

Thank you,
Susan

SeekingBliss,

Thanks for your response and congratulations on your good news!

Since your husband's first PSA was 2.3 - can you tell me if the doctors know where your husband's cancer is located?

Thanks,
Susan

Susan,

They have not yet decided where the cancer has spread but based on the following, he is quite sure it has and it is only a matter of time before it will present itself:

PSA rise from 2.3 to 20 in 1 1/2 years

During surgery it was determined that it had invaded the seminal vessel and had ruptured the prostate capsule.

Though the lymph notes in the pelvis that were biopsied were negative, the surgeon was only able to test a limited #.  He couldn't remember why he didn't test more.

1st post-op PSA he was back up to 2.3.  The Dr. told us that .5 is high post-op. 

All of the foregoing factors indicated that the cancer was beyond the prostate bed and decided that radiation was not the best choice as he felt quite confident that it had already spread somewhere.

I know the radiologist personally that did the biopsy and he called me one day to see how he was doing.  He confirmed to me that he felt quite confident if he was to go through a cat scan, MRI, etc now that you would probably detect lymph node involvement.

Our Doc wanted to treat with hormones immediately before he gave it any longer to grow.  My hubby liked that option.

So here we are!  I have done a ton of research and reading and like the way the urologist is handling it.

Another doc specialist of mine told me that he sees men in his specialty (cardiology) all the time that have been on hormone treatment for many years doing quite well.  This gave me the sense of hope I needed.

Good luck on your journey.  Fortunately my hubby has not felt too bad with the side effects.  He is more tired than usual and has had the odd hot flash.  He has lost his libido and spontaneous erections are not possible.   He has successfully used the tri-mix injections when we want.  He admits he does not have the sexual desire the same, but he does have the desire for the intimacy of the encounter. 

This last injection he has felt worse in the first three days then he did last time.  I have read that it isn't until the 2nd injection that you start really experiiencing the side effects.  Guess we'll wait and see.  Something this silly cancer has taught me that we have no other choice but that.  The future holds no guarantees.  But that is true if you suffer from pca or not.  Love and laughter is our choice :)

Good luck.

SeekingBliss