I would like to thank everyone who replied with advice and personal accounts. I keep reading your posts over and over. After many phone calls we have some solid recommendations for surgeons. We have set up two consultations so far - one with our urologists partner who does robotic surgery (in a NYC suburb) and one with a top NYC robotic surgeon. We also want to see a doctor at MSK who does
open surgery. He is booked up for months, but if we get to see him soon we will consult with him. I would prefer my husband to be treated in a major NYC hospital even though there will probably be residents in the operating room. I want someone who has done a few thousand surgeries.
One of the issues that I struggle with is how much time my husband has to make a decision. As I mentioned in an earlier post, our urologist wants him to act quickly which makes me feel pressured. John has posted that a G6 does not metastasize, but if the biopsy grade gets upgraded or if there are cells of a higher grade in my husband's prostate, what happens if these cells escape? Do we really face time pressure to make a decision due to the large volume of cancer? Our list of surgeons to consult with has become a very short list because we are going with who the doctors we spoke with say are the best surgeons in NY. We have also spoken with patients of these particular surgeons. However, if we cannot get in to see one of the doctors on our short list for 2 months just for the initial consultation, the time pressure we are under means that he is off our list.
My husband is leaning towards robotic surgery if he goes the surgery route. Our understanding is that the results from
open and robotic surgery are close. The way we understand it with
open surgery there is more of a feel for the surgery but with robotic things are magnified which gives more of a chance to save the nerves. Our urologist says that the results are slightly better with robotic. Of course we understand that the skill of the surgeon is the most important factor. Any feedback on this topic?
My husband plans to get consultations with radiologists. Do the radiologists who do external beam treatment also do brachytherapy or are there separate brachytherapy doctors?
It has been suggested that my husband see a prostate oncologist to get an unbiased opinion. Do they deal mainly with advanced disease or would they be the right person to advise a G6 man at the beginning of the decision process?
My husband is leaning towards surgery but has an
open mind. They guys my husband spoke to who had surgery are all doing well - no cancer, no more than stress incontinence, ED has resolved. I think that my husband is thinking that with the excellent doctors available to him here, he may do well with surgery. The two people that we know who did radiation had horrible side effects. One of my husband's colleagues who did surgery, radiation and chemo advised him not to do radiation because of the terrible side effects he had from it, worse than from chemo. We don't want to make a decision based on anecdotes, but they do have an influence.
I am starting to make a list of questions to ask the doctors when we meet them. There are a few issues that I would like clarified before we proceed with treatment. One of the questions I had is about
sparing nerves and about
margins. I asked our urologist if my husband's large volume of cancer meant that it would be more difficult to spare the nerves and he said no, that it does not work that way. I was also concerned tht the volume of cancer puts my husband at risk for positive margins and his answer was, probably not with a G6. I want to know if there is any way to reasonably know, ahead of time, if the nerves can be spared and the margins will be clean. If not, than it might make more sense to do radiation. John mentioned a multparametric MRI, an MRIS with a 3 Tesla, and a color Doppler ultrasound. I would like the doctors to tell me if these tests might help address my concerns.
The other question I have is I would like to know if the doctors can give us a statistical probability of the likelihood that my husband will be cancer free with a particular treatment. That way we can compare the success probabilities of the different treatments.
Are there any other questions that we should be asking the surgeons and radiation oncologists that we meet?
Thank you for your support and feedback. This is such a stressful and difficult time and it is comforting to have a message board where I can get such excellent advice, as well as support.
Post Edited (bluebird123) : 8/12/2012 7:49:09 PM (GMT-6)