Gleason 9 Stage IV outlook and treatment options

Hi,
A family member (65) has recently been diagnosed with PC. Initially he had a high PSA (49) followed by a firm DRE and then a biopsy. The biopsy was limited to 3 cores, all showed cancer. Initial diagnosis was a Gleason 8, but a second opinion upgraded it to a Gleason 9. He had a CT scan. Initially they read it and said it was contained, but again on a second opinion it was found to have spread outside the prostate. A partial bone scan was done and hot spots were found on several ribs, spine and pelvic bones. He has no symptoms at this point and was given hormone shots (unsure which ones, but they are monthly in the stomach) after the first biopsy. Due to the misreads this process has stretched on for months, initial diagnosis was in May, but the new diagnosis was just a few weeks ago. No follow up PSA testing has been done since starting the hormone shots. He is meeting with a radiation and medical oncologist later this month. I'm also pushing him to go to a major cancer center as the current treatment has been really apalling (slow and lots of mis-reads of reports).

A few questions:
- Based on my reading it seems like the prognosis is pretty grim with some reports suggest months or a few years, but I've read a lot of reports of people being ok for 5 - 10 years. With today's treatments what do you think a typical survival time might be?
- Given the delays from May - Sept is it likely that the delays allowed the cancer to spread significantly? Should he have had aggressive treatment immediately back in may?
- What are the typical treatments? Are there newer cutting edge treatments that would only be done at major cancer centers, or is everything main stream now?

Thanks.

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65 years old Rhode Island
5/15 PSA 49, Biopsy showed Gleason 8, second opinion upgraded it to Gleason 9 3/3 positive cores
5/15 Hormone shots started
6/15 CT Scan done, told cancer was contained
8/15 Second opinion on CT scan report was that cancer has spread locally
8/15 Bone Scan, hot spots on ribs, spine, possibly pelvic bones

jegan, glad you found us but sorry you need to be here on behalf of your family member. Likely a number of people will be along shortly, but as something of the G9 concierge let me welcome you here. Lots of knowledgeable people here, all just other folks with this disease but many have been living with it a long time.

I'll add you to the Gleason 9 Crew roster. It's in this link, a gathering place for G9 cases to find some specific support, history, and others with similar diagnoses. You'll find a lot of Gleason 9 cases, most doing well.
www.healingwell.com/community/default.aspx?f=35&m=3182035

For your specific questions:
1) Nobody, but nobody, can give you a survival time estimate that means much at all. This disease progresses differently in everybody. Some much shorter, some much longer. about all we can do is throw everything at it that we have, and live it out. We have a well-known forum member, Todd1963, that had a very dire diagnosis and is presently living out loud, with an undetectable PSA about 9 years later. It's just not predictable, and not really a good path to tread mentally.

2) Did the delay worsen things? Maybe, probably, but how much is unknowable. It's also not anything to fuss about, since all you really have is a bright, shining, *now*. Play the ball where it lies.

3) Given the stage of the situation, hormonal, immunotherapeutic, and chemo treatments are the primary tools. Usually starting with hormonal therapy, this can control the situation for a couple years to several years. In the hormone therapy vein, there are some basics (Lupron, Casodex), then supercharged versions of them if/when the PSA starts rising while still on them (Zytiga, Xtandi). Eventually HT stops being effective, and then you're on to chemo and so on. There is recent data indicating early chemo has a significant positive effect. They used to save it until very late in the disease process, but a recent study showed a very large benefit (17 months) if it's done right up front (though after hormone resistance sets in).

We have some folks dealing with this exact situation, and they'll be along to help and (hopefully) to correct if I've stated something wrong in #3.

Thank you. Its encouraging to see others doing so well with the same diagnosis. It's certainly helped to read the stories and share some of them plus the treatment experiences. Very glad we found this place

JEgan,

The shots in his stomach are probably Firmagon. That is a hormone therapy drug that blocks the production of testosterone which prostate cancer usually needs to grow, at least at first. Firmagon is a good drug and is probably what he would have been given if his diagnosis had been perfect in May. So he shouldn't beat himself up about the delays from the second opinions.

As others have said, there is no way to know how the disease will progress, or how fast. There are a lot of treatment options and men with stage IV disease will usually have two or three more options waiting if their current treatment stops controlling the disease adequately. We have quite a few members who were diagnosed with dire prognoses who are still controlling their disease, often with few or no symptoms, years later.

With more and better treatments becoming available every month it is important to work with doctors who keep up with the latest innovations. Your family member should plan to consult with a lot of doctors in different specialties. You mentioned that he is scheduled to meet with a radiation oncologist and a medical oncologist. That's good. Those are the right specialties but he might want to consult with doctors at a major cancer center just to keep his options open and to make sure his local doctors haven't missed something.

Your family member has a fight on his hands but there are weapons available.

Sorry I forgot one piece of important information. He did have one follow up PSA test in August, which showed the PSA roughly tripling despite being on the hormone. I assume this means the hormones are not working? Or does it take a while for it to change once on them?

One other thing to keep in mind as he forms a medical team. Include his cardiologist in decisions since many of the treatments that help combat PCa are tough on his cardio metrics.

Fresh in my mind since I just had my 6 month consult with my cardiologist this morning.

Make sure they did a follow-up test to be sure his testosterone dropped to "castrate level" which would be below 20. Below 10 is even better. Some men simply do not respond to the shots and their testosterone remains high...This might account for his PSA continuing to climb..(not a good sign)....Yes indeed, a consultation at a major treatment center like Mass General or Dana Farber would be worthwhile...If you have not read Dr. Pat Walsh's book "Guide to surviving prostate cancer", you might want to pick up a copy.....Best of luck to you !