I'm writing because I've visited before as my dad was going through the testing. Now that it's confirmed that he has prostate cancer, I had a couple of questions about anyone else's experiences and what's going to happen next.
My dad was first alerted to a problem when he had a PSA test and it came back with a level of 49. The doctor had them redo the test and it came back again at 48.5. A month later, the doctors did a biopsy and confirmed cancer and put him at a Gleason level 9. Last Friday he had a CT scan and over the weekend an MRI of the prostate and then Monday he had a body scan of his bones. He doesn't have cancer elsewhere, it's localized on the right side of his prostate. His lymph nodes are swollen and because of that, the doctor advised against surgery.
Today, he met with the radiologist/oncologist who painted a much bleaker picture, saying that although the cancer's not growing in his bones, he'd be surprised if there weren't already cancer cells in them considering his levels were so high. Also, he didn't want to give the Lupron today, saying that his PSA was already so high and the Lupron initially shoots the PSA level up and he didn't want to risk it by causing cancer cells to enter elsewhere in the body. He started him on Cosacor (I think that's how it's spelled. My mom is really upset about today's meeting and couldn't recall clearly.) He said that should bring his PSA down a bit so that they can begin the Lupron next Wednesday. He'll start radiation on August 18th and go daily for 8.5 weeks. The doctor also suggested putting in a stent to help relieve the pressure in his kidneys. My dad is a very private man and I know that this is really difficult for him emotionally. He doesn't want to talk about this to anyone. I don't know what to do for him. I recall someone recommended a book about prostate cancer treatment. Is there a recommendation anyone could give me? I think he might respond better to that than to talking with people.
I guess I was wondering if anyone has been through a similar situation, as far as the high PSA and then having to wait to begin treatment. Why does the Lupron have to come first before the radiation? Or, the Cosacor before the Lupron? I know some of this comes from impatience on my part for the process to begin, but I feel like he's been in a holding pattern for so long. That first PSA test was about two months ago and he still hasn't really started anything to treat the cancer. He's going to Henry Ford Hospital in Detroit, although the radiologist/oncologist was out of their Macomb Twp. hospital.
Thanks for taking the time to read through. I'd be very interested in hearing from anyone who wishes to comment.
I am sorry to hear your news but welcome to the board. High PSA’s and a Gleason 9 can be very scary. I know as my case was similar high PSA’s and a Gleason 9. My journey started in 2005 although symptoms appeared in fall 2004, PC was not diagnosed until I switched DR’s in early 2005. I have found a lot of information and hope through this site. I wish I had found it sooner.
I found two books recommended here particularly helpful. DR Myers book was an easy read and was very uplifting.
Beating Prostate Cancer by Dr Charles “Snuffy” Myers
A Primer on Prostate Cancer: The Empowered Patient's Guide Steven Strum, Donna Pogliano
I won’t comment on the medical plan as I have no medical training.
From my own case I would have read the books I mentioned as early as possible.
If possible I would get a second opinion on case from someone with as much experience as possible with highly aggressive ie high Gleason prostate cancer.
If your dad is going with radiation (probable) I would encourage you to again look for the most experienced center available.
I made changes to my oncologist, treatment and mental attitude after reading Myers book. Actually he is my main land US Oncologist now. Currently after a Radical Prostatectomy, Radiation Therapy and Intermittent Triple hormone Blockade my PSA is <.01 lowest measurement for an Ultrasensitive PSA test. I feel no worse for wear than when I was first diagnosed and I plan to continue this way for some time yet, God willing.
All the best and I expect you will get some good feed back here.
Thanks, John. I really appreciate the recommendation. The first book is the one I recalled from reading the boards earlier, but the second one sounds pretty informative, too. Thanks also for sharing your history and I wish you the best of health and many, many more years.