Well, I had my appointment with Dr. Hussein yesterday.
She is very friendly, nice, highly intelligent, and quotes lots of studies.
Basically, it is great news that my scans are all clean, but of course the rising PSA cannot be ignored.
Her suggestion was to try and reverse this. She pointed out that it wasn’t an emergency and doesn’t have to be right away, but I should start HT soon. She said there is no acceptable or agreed-upon point to start HT. But she also agreed that HT has a much better chance of working BEFORE Mets. So, my conslusion is that there is SOME urgency.
She emphasized many times that predicting for a person is difficult. Translation: one cannot tell how I will do with HT,( but she said there is a 90% probability that I will have a good response to it).
She again emphasizes that there is no evidence that HT improves overall survival. Yet, it will probably delay Mets. It’s very strange. Perhaps it delays Mets but when they occur things move much quicker (compared to not doing HT)?. If it doesn’t improve overall survival, what does it accomplish?
We also discussed continuous vs. intermittant HT. She said ideally I would do the IHT, and that 8 months would do it (2 four-month Lupron shots). I asked what would be the trigger point to stop the HT. She said just a significant decline in my PSA. She even said if say it went down to below 4 after 8 months, they would probably stop the HT. Now, a lot of this flies in the face of what I read. I thought they wanted the PSA to get below 0.1 (maybe even 0.05). I also asked about the study she ran that seemed to show in many cases (like mine) that CHT was superior to IHT. She said my case didn’t apply because ALL their participants had Mets. It was a question of how severe the Mets were.
Ok, so far, a reasonably productive meeting although plenty of ambiguous points as mentioned above.
Then things took a downward turn. I said I was leaning towards not waiting any longer to start HT. Why wait for Mets. She said fine, she would do Casodex and a 4-month Lupron shot. I said my local urologist was going to do that. It was clear, although she was still very professional and cheerful, that she did not like that at all. She had been about to make an appointment for me, but then she said we will not make any more appointments. She does not want so split the duties that way. In short, she wanted to be the one to do the shots. All of a sudden working with my local urologist became a difficult thing. I was really quite surprised at her attitude. Eventually, she did say I could call sometime in the future – perhaps after 8 months of HT – and then maybe make an appointment.
I was surprised. My only conclusion pertains to dollar signs. I expected better. My wife was with me and she did not quite read it the same way. She pointed out that it can indeed be difficult making decisions while working with another doctor. In short, Dr. Hussein had a valid point, according to my wife. Deep down, I don’t think that’s the situation. I remember sensing some degree of frustration on the part of Dr. Hussein when I said I consulted with Drs. Scholz/Lam. Twice she has denied even knowing them, when I darn well know she spoke at a conference run by Scholz.
It was difficult getting opinions from two experts and now all of a sudden Dr. H. seems to have problems with my consulting my local urologist. It was not a problem until the Lupron shot came up.
Well, I do have my consultation with Dr. Lam late Friday. Assuming he concurs with starting HT, I will just do it and I am going to do it locally. Why should I drive 2+ hours each way just to get the Lupron shot. Also my local urologist has been very nice, willing to work with my experts in any way I want.
Am I misreading the situation?
Any opinions/experiences from the group?
Mel