Devasted1 said...
HopefulG9,
Your HW name is so important, Hopeful is a great start down the prostate cancer road. I am truly sorry about this diagnosis, but I too am a G9 and was dx in January, 2010 and currently undetectable, so there is hope for you and your husband.
I was told by my oncologist once the biopsies came back with the bad news, is that I would need surgery and adjuvant therapies including hormone deprivation and intensive radiation. Once pathology came back from surgery it was worse with the cancer jumping ship outside of the capsule, one lymph node involved, perineural invasion, seminal vessical involvement, etc. Could have been worse, but not much. ....................................
I will say from dealing with this for four years that it is true that it is much more difficult to operate if one has first gone through the eight weeks of daily radiation because of the scar tissue caused by the radiation. For that fact alone, helped me to decide to go first with surgery and get that darn prostate gland out to the land fill. i was told to expect to start radiation immediately after surgery since I was a G9.
What I found out at my six week PSA test post surgery is that I was non-detectable. I met with a medical oncologist in Las Vegas that is a very respected MO and he told me to fly back home and start radiation ASAP and start hormone deprivation. After meeting with many radiologists before surgery, I had selected the RO that I trusted my life with and met with him to start the process. FYI, the protocol is usually to start hormone deprivation weeks before they start the radiation so I went into the appt thinking I would get the shot of Lupron. I have to give him credit because he told me to slow down because I was non-detectable and my body had so much healing to do after surgery. He recommended to get a monthly PSA check and if my needle moved out of the non-detectable to begin with the hormone deprivation and then radiation.
Fortunately, I was able to go three years being non-detectable and to heal from surgery. I decided to begin the hormone deprivation and radiation even if I was non-detectable to make sure if there are any cells anywhere, they most likely would be close to the prostate bed. I have no regrets in doing both in hopes that it will give me years to come without having to worry about the monster poking its ugly head up.
The great news is that the brilliant researchers are coming out with great new drugs and treatments that follow up after surgery and radiation and are very successful in keeping the cancer in check.
There are a number of us here on HW that are G9s and you can search a post that shows all of us that are in the exclusive club.
So like your HW name, please remain HOPEFUL because there are so many treatments that can be done to help us. Please take the time to find the very best oncologists for surgery and radiation, it makes a tremendous difference in outcome and recovery.
God bless you both in dealing with this nasty cancer.
Hopeful G9 said...
devastated1,
Thanks for the encouraging post. We too felt devastated when we got the bad news from the biopsy. Reading about your experience and others gives us hope and an idea of what could be ahead. We will find out the results of the scans today. The good news is we were able to get an appt for a second opinion for early next week.
Great to hear you are doing well after 3 years.
Hopefull
Hopeful, I have just joined and am also a G9 4 weeks post robotic surgery. The decision of which way to go was hugely stressful, and even as I rolled down the hall towards surgery I was only slightly more sure surgery was the way to go vs radiation. I'm not sure I will ever be sure. God bless Y'all during this stressful time as you research and decide which is best for you. I have just found this site and I think you will get some good advice here.
I went for a 2nd opinion up to Vanderbilt in Nashville, or actually for an "unbiased" opinion simply on which way I should go. This was from a nationally known PCa guy. Though he was a surgeon, he knew I was probably not going to have it done there. After he did his DRE, he used the term "no brainer", that I should have the surgery only because he felt fairly sure it was contained. And if contained, he could offer me a cure. And they would better know post-op, and by taking the lymph nodes, if it was contained and if not how far it had gone. With the G9 and radiation, we would not know for several years if it was out in the nodes or further. Still, he suggested I talk with some radiation guys I asked him about
in Atlanta, which I did.
Good news: lymph nodes clear. Bad news, it was somewhat into the seminal vesicle. ( I'll get more detail when I see him in about
3 weeks). But also because he "cut wide" he felt there was a good chance he got it all, and I had either a "fair" or a "good" ( in my emotional state I was not sure afterward I'll find out later) chance of a cure. When I heard it was not contained, I sank and said "OK, what's next". To which he responded "Nothing unless your PSA ticks up later, then some more therapy"
Devastated1, I got a lot of hope from your post, and the fact that some of your experts in hormone/radiation "salvage" follow up therapy told you to slow down, even though others had told you to start all of that right away. I knew up front(they had told me) if it was out of the capsule I might need a "radiation bump", but so far he thinks I should do nothing. Since you stayed undetectable even though you later decided to start the hormone block/radiation later, that gives me hope that this could still all go well. So, like hopeful, I am hopeful!