Disappointing meeting with Dr. H late yesterday

I cannot speak to the financial implications being talked about here but I can say the Maha Hussain is an excellent researcher with an excellent reputation. You said she did indicate that you can get back to her in 8 months and that isn't unreasonable ~ that's a review after two rounds of Lupron and typically more than one round would be suggested before any changes anyway. At that point you may likely be at an undetectable phase and showing a remission. In addition, Dr. Hussain is the author of that study showing continuous HT as being better than intermittent HT so if she was "after the dollars" she might have a reason to tell you that you are not better suited for intermittent HT ~ but she didn't do that.

As stated in the Tips for Metastatic PCa thread I stated what she said to you and wrote for metastatic PCa ~ that if you cannot achieve a remission and have mets while on HT THEN you need to stay on HT. In addition I understand that "4.0" is that magic number that if you can't get below it your prognosis is diminished significantly so waiting until your PSA is perhaps 40 will probably be an issue in getting below that magic number...

I am sure of the fact that Hussain's work is highly respected by her peer reviewers. Perhaps your visit with Lam will be different? But if he does not recommend HT for your rising PSA, or at least it's probably in the near future, I think you'll probably need to consider another opinion for your own peace of mind...

Do I think it's possible you are misreading this encounter? It's possible. You might revisit it versus reacting. But I don't think she was driven financially. Lupron shots aren't that expensive anymore.

Tony

Hi Mel, you got so much good advice here.

Mel is getting the same thing here that he gets from his many doctors -- a variety of conflicting opinions, not to be confused with a second opinion.  if you wear two watches which one is giving you the correct time?

i'd pick a doctor and go with that doctor's advice (it wouldn't be hussein ). 

ed

 

1) HT can delay Mets but there is no proof that it extends overall survival and

it can extend overall survival if some other drug is found or you are one of the lucky one like michael milken (or zufus) who responds to it for years!  i think there is a real danger in lumping yourself in with the statistics.

ed

 

JAV:

HT does the total opposite of improving QOL.

It may be that they just have not done studies about whether or not HT extents overall survival.

Anybody know?

Mel

Mel,

What qol aspect are you worried about?

TC:

I was not comparing QOL regarding last stages of advanced PV vs. HT.

I was talking about before HT vs. after HT.

Jerry L -- good question. First of all, the fear of the unknown enters into it.

I am not worried about the loss of libido. Occassional hot flashes and sweating is not a huge concern if it is not too long too often.

I am worried about joint pain, loss of muscle mass, weight gain. I think some of this can be counteracted if I get off my butt and return to my gym workouts.

My main concern: I love my work. It is the one time I never think of my PC problems and I totally enjoy my students, job, subject matter, colleagues, etc. I am still sharp and with it, so to speak. I worry about this being compromised due to cognitive impairment as a result of the HT. I worry about turning into an OLD man!

Mel

 

Mel,
I think you'll do much better believing that you'll be ok. I truly do.

Please try to stay positive when you have to cross this road. I'll do anything to help you. But you have to believe in the power of positive thinking.

I don't like sounding generic here, but I have witnessed the difference in mind set and the effect it has on QoL. I believe it's far more powerful than the SE's of HT...

Peace, brother... And kick this darn diseases ass...

Tony

Post Edited (TC-LasVegas) : 1/16/2013 9:51:23 PM (GMT-7)

TC-LasVegas said...
Great post, Bud...

HT is no walk in the park. But it is quite largely a godsend. There has been one Nobel Prize in prostate cancer research by Charles Huggins at the University of Chicago. His work? He discovered that prostate cancer was a hormonally dependent cancer and that hormonal therapies (initially orchiectomy) extended lived and reduced many morbidities.

Tony

Please read Dr. Morgentaler's research about Huggins' work.   Huggin based his conclusion on only one patient's data !!  Morgentaler has basically disproved Huggins' conclusion in his practice.  Giving testosterone supplements is not like pouring "gas on a fire" , according to Morgentaler.  Old myths die slowly.  And he sees more CaP in patients with low testosterone levels.

Please read the two articles at the bottom of this link by Morgentaler :

http://members.triton.net/vandenbe/CAP/CaPArticles_AUAGuidlines.htm

JAVguzzi,
I read it. Now can I ask, why did you request me to read it? It has nothing to do with my point. And it doesn't trump what I said. Clearly Huggin's early work needed further review but his findings were not just based on one paper or just one patient. He wrote more papers.

Here's the whole reason he won the Nobel...

www.nobelprize.org/nobel_prizes/medicine/laureates/1966/huggins-lecture.pdf

His one paper may have been based upon one man, but there were many papers in his work...

Tony

Bud and Jerry L - MOST EXCELLENT posts! One from the medical world and one from someone who as I like to state has "been there, done that." Mel, I would focus on these two threads!!!

Mel and Casey,
Alluding to Casey's point about "man pain years". Clearly androgen deprivation, and estrogenic supplementation were very instrumental in changing the course of prostate cancer therapy. Men lived very much longer, and pain was very reduced and pain free years were a huge finding. But to make it even more fascinating, all you need to do is read and analyze the first paragraph. Men on average were only living a year when the disease was discovered. Now think about that. How advanced would prostate cancer have to be that the average diagnosis was so late that men only lived a year?

You have to consider how pioneering this was...

1> PAP, discovered in the late 30's, was the first test that could identify metastatic tumors outside the prostate. So it is that when men had metastatic lesions until PAP they had no idea it was prostate cancer without actually dissecting the prostate in an "exploratory surgical procedure". Eventually they knew what the metastatic pattern looked like in men, but that was done often after life.

2> There was no PSA, Gleason Score, or imaging that could identify the disease. So they may have had pain, but the source was unknown and there was no treatment other than pain medication. Probably high amounts of opiate based drugs. These guys would likely have had PSA's in the thousands.

3> Still with all that, Huggins et. al. discovered how to make these men live years with very improved QoL.

When Huggins wrote about "fuel on the fire" he was referring to men with aggressive, advanced Stage IV cancer that were castrated and experiencing disease control that was never seen before. It was not a myth. It was a fact that adding testosterone was counter productive.

Only in recent years have treated men been given androgen replacement therapy, as written by Morgantaler in the article above. But the tools are drastically different and the cases much earlier detected due to PSA, and aggressiveness is also a factor and that wasn't even charted by Gleason until 1968 and put into standard pathology until the eighties. So I think that it would not be proper to call Huggins work in the 40's 50's and 60's a myth given that all cases were so advanced, no PSA test existed, and no-one knew how to grade aggressiveness. Still Huggins was reviewing the possibility that once disease was brought under control, could men be given androgen replacement to try to improve QoL even further? He apparently decided that it wasn't worth the risk/reward.

Fascinating indeed and worthy of a Nobel. But it is true today that technology has made it possible to consider giving a man testosterone replacement but it is highly controversial even still in high Gleason cases as well as stage 3+ cases. I don't think the "myth" has been fully dispelled.

Bluebird123 gives us a great example of a man that probably had no chance of 17 years of survival before Huggins et al. And after being on HT for 17 years that case probably is so used to being on HT that he does not have "SE's" he would notice out of what he's used to.

Another point...Men living without testosterone is a centuries old game plan... Eunichs and Castrato's are men that were castrated by torture or by choice dating back a millennium. There is data that these castrated men lived an average of 16 years longer than normal men.

I'm curious what role not getting prostate cancer played in that if any...

Tony

I just remembered another thing that the guy we met last night said. He said that the reason his doctor is not taking him off of HT is that not only is he doing well, but his doctor feels that his body is so used to being on HT that if they took him off of it after 17 years then they think he would have severe side effects. The guy had a thick journal of his PCa journey with him. Maybe he will write a book about his experience (just speculating).

Bluebird,

What Gleason is he? I'm always curious on that?

17 years, holy crap. And what a twist on side effects.