Prostate Cancer, Gleason 9 at 48 years old

Hi, bobmars--

It ain't the path report you were hoping for, there's no sugar-coating that. It's very likely, though, that the cancer has not spread outside the pelvis and has not metastasized to the bones. The reason for hope, since you ask, is that prostate cancer treatment has advanced greatly since your father passed away from it (I went back to your earlier post). If the cancer hasn't metastasized, there's still the possibility of a cure.

If I were you, I'd want Dr. Epstein's lab at Johns Hopkins to take a second look at the slides. Except for that one core with 5% G pattern 5, you're 4+3. I'd want confirmation that the PCa's been graded correctly. It may have an bearing on what the best treatment option is for you. The instructions for sending to Epstein's lab are in one of the sticky threads. Or Google Epstein + Hopkins + prostate and you'll get a hit for his website.

While you'll want and need to start treatment soon, don't rush. You have time to do your research into all treatment modalities -- surgery, various radiation options, ADT, and chemo. Consult with top specialists in each particular treatment.

Keep your spirits up. We're here for you.

Hi there Bob:

Sorry to hear of your diagnosis but its not the end of the world. I was diagnosed with Gleason 9, Stage 4 prostate cancer (spread to the bones) nearly 6 years ago. After a lot of research I decided to get my treatment from MDA in Houston. Despite my diagnosis, they put me on HT for 1.5 years, removed my prostate and local lymph nodes, and treated my prostate bed with IMRT. I have been off treatment for about 4.5 years. A low level of cancer is still there but it is increasing very slowly (as measured by my psa) and my MO tracks me with periodic scans which show no cancer. It is super important, especially at your age that you go to one of the top cancer centers like MDA, Mayo, Sloane-Kettering etc. You need to do everything you can to knock it out for good. I am happy to share my experiences further if that is helpful.

when you are diagnosed with Pca...every pain seems like its cancer...probably not...regardless the bone scan will tell..Im confident it will show nothing...be sure to tell the folks giving it about any old injuris that could light up...good advice give already...what is your psa score.. I scanned your thread...did not see it...x this is not a death sentence in any fashion...but it is a journey...with peaks and troughs....take care and thanks for letting us help you...regards logo

Not the report you wanted. Any out of band result should be double checked. Still your next step is the imaging. I'd be surprised to learn that your back pain is PC, more likely just a stress reaction - speculation on my part, but I wouldn't expect bone pain at your PSA level.

You still have all your options open, but if the G9 is confirmed you'll want to take an agressive approach. RT with ADT might be a good option as that can target a wider area than surgery. Unless imaging confirms something outside the prostate, you still in the curable zone.

We have members in your area of the world, they should be along soon with more suggestions on good treatment centers. You'll want to see a number of specialists before making your treatment choice.

and this PC thing is a kick in the head. Take some time to adjust to it - this is an emotional/mental thing as it is a physical thing.

Andrew

Hi Bobmars,
Welcome to our club. Totally sucks that you have to be here. 48 years old. I was 42. The G9 if confirmed is troubling. As others have said, at present, your treatment options are wide open. Positive thoughts coming your way that the scans are clear. I want you to know that even if things came back at less than optimal results that it does not have to be the end. Much has changed since my DX in 2006. I was only given a year. I had mets in my bones, lungs, lymph nodes and brain. I am still here and doing well. I live just a couple hours south of you near the volcano. I am being treated at Providence Cancer center in Portland. My doc is really good. Another terrific option is DR. Tomasc Beer OHSU. They are doing terrific things there with Prostate Cancer. No matter what, life is going to change. This disease can be extremely challenging but there is much hope so do not lose heart. Stay positive. Educate yourself and be a strong advocate for yourself. Learn all that you can in order to make the best possible treatment decision. SBRT would be a great treatment choice if you are a good candidate. No water matter your treatment, I am certain that hormones will be a part of it. They shrink the cancer but they are no picnic. I have been on them for over 12 years now. Hang in there and stay positive. Todd

Post Edited (Todd1963) : 9/21/2018 9:13:43 AM (GMT-6)

So, the good news is that there are a number of options for treatment that give you pretty good odds of beating this thing, even with Gleason 9 disease and with your PSA edging up past 10 (which is often considered the cutoff for the deep 5hit). The bad news is that the treatments all kinda suck, each in its own particular way.

As others have said, you'll want to talk to doctors in a number of specialties. You should expect them all to be pretty enthusiastic about the advantages of their own techniques. It's up to you to decide which is right for you. If I were you I'd be a little hard to sell on surgery. At your risk category (and mine) surgery is unlikely to be enough to be fairly sure you've gotten everything and so you'll wind up doing radiation, too. Surgery has its unfortunate side effects and radiation has it's own side effects but mostly it makes the side effects of surgery worse. And of course, you'll probably wind up on hormone therapy to suppress your testosterone for a while during treatment. I've had all three. I call it the three-scoop crap sandwich and I found the hormones the most flavorful part.

Recent studies have found that in most cases you can get about the same disease control (or slightly better) with radiation than you get with surgery plus follow-on radiation, and with fewer (if still annoying) side effects.

Good luck. You have a good chance of beating this thing. But it's gonna suck for a while. Hang in there.

Bob...I had surgery at the Dub...Dr. Bruce Dalkin...Great guy...great surgeon...might want to check him out...if you do choose surgery...if you choose to pursue other options...imo...you should...the Dub and other hospitals in the SEA area has it all...no need travel imo…

On another note...whats go with Russell...he needs to realize...opposition reviews his moves all the time
he is stale and stubborn...not a good mix...its still doable...but they really have not been the same since the marshal lynch call... a case of overthinking a problem...the obvious call...to everyone including the Pats...and wow how they got to that ist and goal really made it hurt...

Hi Bob and let me add my welcome to our community. It sucks to have to join, but it's helpful to have friends that know what you're going through. And even as a G9 you can lick this...I had a very similar diagnosis to you at age 51 and many years later, I'm doing very well. No reason that you can't either.

I'll join the chorus on the Epstein second opinion as a quick and easy first step. And good luck with your upcoming scans--the chances are they will come back negative. Regarding treatment, keep all of your options open and talk to as many experts as possible--both uros (surgeons) and radiation oncologists. Just to make it more difficult there are different types of radiation and ROs typically specialize in just one. (I had a combo radiation treatment of IMRT and brachytherapy.)

I agonized over my treatment decision--it took me about two months to decide and get all my appointments in. At the time that seemed so long, but in retrospect it was faster than a lot of guys. You'll do well and I hope we can help.

Hi Bob,
Adding my welcome to our clubhouse. Sorry about your diagnosis, but you'll get through this. You're surrounded here with people who have. I agree with the great advice you've already been offered here -- second opinion from Epstein. Surgery may turn out to be the right choice, but don't assume it is the best choice without first seriously looking at all treatment options. Most new patients want to "just get it out" and who can blame them. I also agree that the sciatica is almost certainly unrelated to prostate cancer.

There is a sweet spot in which surgery may be the best option. But on either side of that sweet spot are situations where surgery may add significant side effects without delivering much benefit. For very low risk patients (unfortunately not you) a better course may be active surveillance. For high risk patients (where the cancer has already left the prostate, or who have other clinical signs that suggest surgery isn't likely to be successful on its own), one of the many radiation options may be a better initial treatment choice because it can potentially target a wider area or because the patient is likely to need radiation in the future anyway.

I had surgery as my initial treatment 17 years ago - that was practically the dark ages compared to today - radiation treatments were only just beginning then to be thought equally effective. But if I presented today with the same pathology I had then, I'd probably opt for one of the radiation options that are now available. Especially with the benefit of 20/20 hindsight knowing that I'd have ended up having radiation later on anyway.

I'm not advocating for or against any one treatment, just encouraging you to thoroughly explore all options before you make an important decision. Best,
Jim

Bob, welcome, ditto on the slides to Epstein. Don’t get your hopes up, but a downgrade could change everything.
Not much else to add, you’ve gotten great advice and comments above.

The shock and awe of it all is to be expected. But as time goes by, and you continue to educate yourself, you’ll realize that as Todd said, this is not the end. Far from it. You can have a great life, with a “new normal” that won’t stop you from enjoying what’s important in life.
‘Good luck”

Bob.. just want to encourage you from another g-9 hopefully after Epstein that will change for you but even if it doesn't I would bet that you will die from something other than prostate cancer. There are so many good treatments out there today, like the guys have said do you homework be your own advocate that's very important! get advice and opinion's from guys like us but in the end it will come down to you and your family so pick the best cancer center, hospital, doctors, and then your treatment options and you will be on here for many more years!!

Larry

Thanks again for all the advice, encouragement and crucial insight. I am very, very grateful as I feel it may contribute to extending my life.

I got the Pelvic MRI and Nuclear Bone Scan results. Unfortunately the bone scan seems to indicate metastasis in one place, to my right sacrum bone. That would be consistent with growing sciatica-like pain I have been having right in that spot (my right butt) for a few weeks. Here is the exact statement on the bone scan report:

"The study is significant for intense radiotracer accumulation at the site of the signal abrnomality within the right hemisacrum consistent with a solitary osseous metastasis. No other osseous metastases are noted throughout the remainder of the skeleton."

I realize that this combined with the Gleason 9 is a very not good diagnosis but I continue to feel optimistic for many of the reasons previously mentioned in this thread.

I am wondering if it's much of a silver lining that except for this one place there is no sign of other metastases. I also wonder if because of that prostatectomy surgery might still be an option. Not that I am eager to do that but I am trying to keep an open mind to all options and just want the smartest approach to keep me going for a long time and feeling as good as possible. There is even a Fred Hutch/University of Washington Cancer study looking at situations where surgery makes sense with very limited metastases https://www.fredhutch.org/en/news/center-news/2018/05/prostate-cancer-news.html (see item #4).

@martian2 my urologist to this point has been Dr. Christopher Arroyo in Gig Harbor, WA. https://www.chifranciscan.org/find-a-doctor/details.physician.b055f1dc-a7f2-4b62-93ba-b75b5ee42201.html

I've sorta been doing all the leg work there but this Friday 9-28-18 I have my first appointment at UW / Seattle Cancer Care Alliance. The urologist I am seeing for starters is Dr George R. Schade. https://www.uwmedicine.org/bios/george-schade
He seems to be a bit newer at UW but good. This is just my entry point into UW/SCCA and today I am also working on an appointment with a medical oncologist there.

My first urologist, Dr Arroyo has suggested an aggressive treatment which I am not surprised by. He has suggested the following:
-- A bone biopsy on the single metastasis on my sacrum
-- Hormone therapy
-- Radiation
-- Chemotherapy (6 cycles)

I am going to see what UW says this Friday before doing anything. I will almost certainly continue through them now. Perhaps they will suggest a similar course of action but I am hopeful they may have some possibilities with immunotherapy or promising trials. Either way I am bracing myself for a bumpy ride ahead but in the meantime trying to eat very healthy and keeps myself active and fit. Also I am still looking into the Epstein lab I just need to verify if my insurance covers it.

So what do you guys think at this point?