Latest Doctor Visit and a real shocker PSA reading

Hi Aimzee,

Sorry if this is off topic for this thread but good luck to Ron.
I hope the surgery has worked for him even though he had to go to the ER afterwards.

Thinking of you,
An

Oh Aimzee,

You guys certainly have had a tough time for the last two years. Hope that once this glan removal op heals that the pain goes away. The surgery certainly took an amazingly long amount of time.

Ms WW it is brave and kind to share you story with us and David. As Tony says, you have a big heart.

Regards,
An

Purgatory said...

i have been reading the HT stories here at hw for nearly 4 years now, and to me, the effects of ht are far lingering, and in some ways, more invasive then being on chemo short term. what am i missing here in the picture.

david

You may have lost perspective on the real side effects of HT by lingering on the negative and discounting the positive. There are many people here who have been on HT, lived with it OK, and do not have any long term effects after going off. It would be useful to point that out, if not for yourself then for the benefit of other PCa patients who come to this site looking for good advice. Having read a fair amount of literature on the subject, and having been on HT for over two years, my opinion is that your picture of HT is simply not consistent with the full picture.

That said, I fully understand that in your present condition HT might indeed make your QOL even more unbearable. That makes me very sad and I wish there were some other viable alternative for you.

San Carlos

MsWorryWart said...
David...
My husband has now been on HT and had Chemo as well... MDA re-imaged my husband every three months, yet after chemo, they didn't do any re-imaging. When I asked why... the Med Onc simply said "We don't expect that much changed, we were hoping to get some of the androgen independent reserviour."

That is a good point; it's my understanding going into this chemo that there would be another CT scan of the spots afterwards...I'll have to keep an eye on that....Thanks....Ken

sancarlos- wanted to answer you seperately. i think that there are too many here, that are trying to think for me (you are not on that list btw, want to make that clear). though i talked often about the potential of HT side effects often, the others that keep pushing that aren't dealing with the pre-existing severe side effects that i have to live with every single day. they aren't starting on the same playing field as me. i know, you know a lot about ht, you and ralf in particular, and i am not doubting your words, experience or knowledge on the subject. but if it that simple, then why isn't my doctor, a specialist in only advanced PC and BC, feeling the same way for me? It's logical that there is more to the story..

if after these new tests come and go, and he doesn't like the looks of things, and then said, "David, let's now look at starting some form of HT to slow down things", then of course I would be compliant with his advice. People here got it butt-backward, my own doctor is not adovating HT at this time. It's that simple. Don't know why others try to make something bad about that fact. Doesn't matter if I like HT or not, that's not the issue..

when i had to submit to SRT in 2009, was one of the hardest decisions i ever had to make. why? because in 2000, i underwent that horrific neck and throat RT, old school style. i dreaded the thought of SRT, i was so afraid something would go wrong, and it sure the hell did in a big way. look what that treatment did to me. burned me bad, destroyed my bladder and bladder neck, forced a total of 7 operations on me, and left me crippled, in contant pain and faitgue, and unable to work. yet, i submitted to it at the time, because i was advised to, and it was the only curative hope left on the table. and it failed miserably from that perspective.

so you can be sure, i am not jumping into any other treatment, ht or chemo, without some clear signal from the oncologist, that it would do more good than harm.

as i replied to tony above, and he never answered back of course, let someone live a day in my shoes, with what i have to deal with, and see then how eager they would be insinuate that i am doing nothing, t hat i am being foolish, that i dont know what i am talking about, that my doctor sucks....etc, etc. they would walk away with a whole new way of looking with where i am at.

i appreciate your thoughts on the subject though, and glad that it has been working well for you. was reading an article just last night, and it was talking about that with some variants of PC, that HT can fail withing 3-6 months, and then becoming even more difficult to control. it happens. would that happen to me? don't know, haven't been there yet, so can't say i know first hand.

for those that prescribe to the severe danger of extreme PSA velocity prior to dx, especially the 12 months before dx, there is very little that can be one, to prevent becoming a PC mortality. anywhere from 6-10x more likely to die of PC within a total of 7 to 10 years, regardless of treatments. people don't like to think about that part. i am about to hit year 4 since dx.

thanks for your input

david in sc

(text removed - 142)

 Edits will follow.

Post Edited (142) : 4/14/2012 9:55:34 PM (GMT-6)

David asked me to unlock his thread. I've edited some posts (my own included), and am unlocking it.

Remember rule 3. You may not agree with a member's choice of treatment path, but that does not allow the kind of postings I've seen today.

 

David - been away for a while, so catching up on how folk are, thus a bit shocked to hear about your latest jump in PSA.
Always concerned about how you are coping given what your body and mind have been through over the years.
(Sorry too that there has been a lock/unlock situation.) I'll leave it up to you and your doctors to decide what's best, and I thus make a distinction between what's best and what's possible.

Alf

I'm also glad this thread got reopened. Purgatory has been very forthcoming with all aspects of this latest phase of his treatment. From sharing private information and candid discussion details from his consultations with his oncologist. These are the types discussions and sharing that provide the greatest information to people seeking clarification and information for their own treatment. It's shameful that some people continue to beat the drum for their own personal preferences and/ or agendas.

David, you mentioned that your oncologist is avoiding HT for the time being, but that chemo is on the table. I'm wondering that since he's concerned about piling up SE's on you by starting HT, what's his basis for the fear that your PCa is hormone resistant and his willingness to do chemo, perhaps in spite of SE's that would result from that?

"Only thing is the only thing I have left is chemo....which I would never want to do until the last minute."

Not true Casper, there's lots a great options ahead. The options today for advancing prostate cancer are impressive and plentiful. And most importantly ~ effective...


Tony

Casper, I understand your point completely. You are doing what you have to be doing for you, and it does come with a price, there are no free rides while treating PC. I hope you get through your HT, and more importantly, that it holds back your cancer for a long, long time.

Daughter, thanks for your words. How is your father doing? I think we all fight on our own terms, when dealing with cancer.

dude, i have re-hashed his thinking numerous times, prefer not to do it again, because some here, will be all too eager to jump me again and try to make a fool out of me. I am starting to learn how that works around here after nearly 4 years. You are right, too many trying to push their personal agendas, and making gross assumptions along the way. There may very well be a time in the near future, that my doctor will prescribe HT, but until he thinks its the right time, if ever, then I am sticking by the gameplan. He's well aware of side effects from both chemo or Ht, its not like we don't talk about that. Whatever step I have to do next, is going to come with a heavy price to me, considering the QOL I am having to exist with now.


david

thanks, mr. bill, that was a nice piece of emerson there. i couldn't agree more

david