Part 2 of my visit to the Charleston specialist is much
shorter and simpler. It has to do with
his take on my prostate cancer situation.
I will say in advance, his advice will only anger a certain few of you,
so perhaps just don’t read any further.
He brought up the subject of PC, not me; I was only interested in his opinions
about my bladder issues.
I never told or even hinted any of my own personal
opinions on PC, I simply let him talk till he finished.
He agreed that surgery for me at the time was the best
shot for a cure. That my “deep and
narrow” prostate bed would have limited any surgeon from doing a good job,
because access on the right side was so limited, and that open surgery was the
only way it could have been done.
He hinted, that all the cath time and stricture issues I
had, may have been a “quality of surgeon” issue, as none of that should have
happened in the first place.
Moving on to salvage radiation, he felt they really
jumped the gun pushing me into SRT when my PSA hit .16. Just like my oncologist, he said he would
have not had me do it at such a low level.
He asked me if I had HT with the SRT, told him no, that 2
of the 3 RO’s were against it and the 3rd
one was wishy-washy about it. He shook
his head, and said in my case, he would have definitely recommend SRT with HT,
because I have an aggressive acting cancer.
His reply was that RO’s in general make the most amount of mistakes with
patients, and tend to get away with them.
As far as my current situation goes, he admits its
unique, being that I failed both surgery
and radiation so fast.
However, his words:
“You don’t treat a number, too many doctors would do that, and its
usually because they have nervous willy patients fretting to death over slowly
climbing numbers” (picture this being
said with a heavy irish accent). He
agreed with my doctor, that he would not recommend any specific treatment at
this time, not until there some evidence of mets, that to preserve whatever QOL
I have remaining is more important.
He said throwing HT on it right now would do the
following: would bring the PSA to 0,
load me down with horrific side effects, and meanwhile, the cancer would still
be busy growing. Positively said that HT
now is not the right timing for its use.
I told him I was on an on-line support group, and there
were more than a few that thought I was making a mistake by “doing nothing”. He laughed and said I should delete the site
if that’s the kind of advice giving. He
said he has found that those on HT are mostly miserable people, and if you don’t
agree to have the same treatment plan as them, you are doing something wrong,
because they want to justify their own treatment decision by making someone
else share their misery.
Just like my oncologist, he said there is no specific PSA
number he would be looking for, said it depends on how I am doing specifically.
He remarked that ultra sensitive testing should be
eliminated because all it does is scare patients needlessly and gets people
obsessing over tiny movements (gee where have we seen that happen before).
He feels that unless you engaged in some kind of advanced
PC treatment, or trial, etc, there’s no point in having the PSA done more than
twice a year. Said it didn’t help him as
the doctor, nor the patient any good to know it more often.
In the end, thought my oncologist was doing a good job
with me, and to continue on, doing these monitoring sessions, pain control
sessions, limited PSA testing, and having whatever scans related to my bones as
the doctor feels right about, and hope that mets could be still years away, so
try to enjoy what QOL I still have left.
Right now, he said the bladder surgery issue was a far
great concern and source of risk.