New member 51, Gleason 8 looking for advice.

Johnny, welcome to the forum, sorry about your being diagnosed.

Yes almost always get a second opinion. It sounds like you are already doing that. The acknowledged foremost experts in Prostate pathology are Dr Epstein at Johns Hopkins and BOstwick at BOstwick labs. That's where most would recommend you go for that second opinion. If your slides are being reviewed by a major national cancer center like MSKCC, Mayo, etc, then you are probably getting them looked at by a good pathologist.

Re your second question, unfortunately there is no easy treaTMENT FOR PC. But everyone is different. I had surgery 5 months ago, and I have no continence problems, and no erectile dysfunction issues, from day 1. But others here have some tough (in a bad way) stories about surgery side effects.
Same goes for radiation,

Have you looked at the different types of radiation? Brachytherapy (seeds), both LDR and HDR (two types of Brachy), SBRT (Cyberknife), and external beam.
Best recommendation is to seek out experts in all treatments, and understand If they all give you the same chance of cure, in your situation, and if so, you need to weigh the side effects of each, then decide which you are willing to deal with.

Have you had an MRI, and did it show any evidence of escape from the prostate? This could be a deciding factor.

Welcome to the club, Johnny. I had surgery just over 3 months ago, and I have minimal issues today with continence and no issues with ED. I would second the above comments, google 'top 10 cancer centers' and go to the nearest one.

You don't mention where you're located, if you share that with us, someone here will surely have experience near where you are. I'd also suggest creating a signature--go to your profile and fill in the signature block with your relevant info. The 4+4 with tertiary 5 is troubling, you're dealing with an aggressive beast, especially for your age. I'd suggest hitting it hard, and hitting it fairly soon. You have enough time to make an informed decision.

Please read the sticky notes above, and keep us in the loop as you work through this. I'd suggest getting a spiral notebook and a big accordion file folder to take to all appointments. Take notes, write down your questions before you go, and keep every piece of paper they give you. Ask for copies of everything.

Hang in there.

Hi Johnny99,

Your initial stats are remarkably like mine were when I was diagnosed, including our ages. I will agree with the other statements here that you don't want another biopsy, but you do want another reading on your slides. Not to worry you, but when Johns Hopkins read mine, they changed the Gleason 8 with tertiary 5 reading to a Gleason 9. (Although frankly I'm not sure how much difference that makes--they're both considered aggressive.)

OK, that's the scary part, but the good part is that I'm doing great and I think you have a good chance of the same. You will need to spend some time investigating your options to land on a treatment choice. I agree with Halbert's comment that you want to hit it hard. In my case, I had the triple play of HDR brachytherapy, IMRT (external radiation) and HT (hormone therapy). But there are other options out there and you want to get smart on them quickly. To that end, ask a lot of questions here...we try to be a helpful bunch.

Good luck on your journey and let us know how we can help.

Welcome to HW.
You don't need another biopsy, just get the slides re-read as you're doing.

The side effects of treatment aren't fun, but neither is PC.

Now is the time to learn all you can about this cancer. Checkout the sticky thread at the top of the forum for more information.

Personally, in your place I'd be looking at the RT options. But then, I am not a doctor, just some random guy on the internet.

Hang in there and keep us updated on your progress,
Andrew

Hi, and thank you,
I live in Vermont. the Norris Cotton Cancer Center is where the pathology will be reviewed.
Peace all and thank for the welcome. I am truly glad to hear folks are doing well.

Hi Johnny99 - and first off, is your handle from "The Boss?"

So then welcome to our little corner of the world. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on.

You asked about getting a 2nd biopsy, at this point I do not know why that would be necessary, however you would be prudent to get a 2nd read on your biopsy slides, as you have mentioned - but I would send them to a lab such as Bostwick and Epstein, two of the best at this as that is what they do and they are the acknowledged "experts."

Along with forums such as this where you can learn from people that have and are going through what you are, do as much internet research as you can. When I was at your point in my journey I encountered the "paralysis by analysis" syndrome as I was spending several hours a day doing all of the research and reading as much as I could - but that's o.k. as it will put you in a better place in terms of deciding your choice of treatment.

With your statistics as presented it would suggest to me (NOT a medical professional BTW!) that you are probably looking at a combination approach, the triple play of HDR brachytherapy, IMRT (external radiation) and HT (hormone therapy) that Michael_T suggested. Based on that approach I do not believe that surgery should be considered as IMHO why add the potential SE's from surgery when the 3X hit will do the job.

At my young age and excellent health, and with no symptoms or issues - while curing the cancer was / is my top priority, at the same time preserving my quality of life ran a very close 2nd. Be aware of this by doing your research and getting these statistics from the practitioners/treatment modalities you may be considering going with. You only get one shot at this - one of the most important decisions we're likely to make in our lives.

We are all out here to help - my very best wishes to you in this journey.

I'll end with Bruce's "Johnny 99":

/www.youtube.com/watch?v=KuYUxsl_F7k

Johnny,
Do not get your biopsy slides reviewed by anyone other than Bostick or Epstein. The reason is that their path labs are dedicated to prostate cancer only. Other pathologists, no matter how good the hospital, have to be expert in reading all kinds of tissues - skin, lungs, liver, etc. You want a specialist on this - not a generalist.

Tertiary 5s are nasty, and most would put you in the "high risk" category. Get an opinion from a radiation oncologist who specializes in combination therapy (brachytherapy plus external beam). It has the best odds in cases like yours.

- Allen

Aloha Johnny:

My stats are fairly similar to yours except I am a GL 9 with a couple of hot spots on 2 ribs. I was give HT for 18 months during which I had an RP at 10 months and RT at 14 and 15 months. I am treated at MD Anderson and with younger guys (and you certainly fit into that category) they like to use intensive, multi-modal therapy.

I have now been off HT for a year and my psa is still undetectable.

In terms of HT, I would say I was fairly typical with hot flashes, some memory impairment, loss of muscle mass, weight gain etc.

Nobody on this site should be giving you medical advice. Everyone would agree, however, that you make sure you have the best medical team you can find and it is not too early to include a Medical Oncologist and Radiation Oncologist in that group. That way you can have some confidence that you are getting the best treatment tailored to your own particular case.

Hi Johnny,
I can only comment on the surgery as that's what I've had. If you decide on that option, do your research first before you commit to a surgeon. It's a delicate operation with additional issues besides the PC and a good surgeon is critical.
All the best.
Steve

Michael_T said...
Hi Johnny99,

Your initial stats are remarkably like mine were when I was diagnosed, including our ages. I will agree with the other statements here that you don't want another biopsy, but you do want another reading on your slides. Not to worry you, but when Johns Hopkins read mine, they changed the Gleason 8 with tertiary 5 reading to a Gleason 9. (Although frankly I'm not sure how much difference that makes--they're both considered aggressive.)

OK, that's the scary part, but the good part is that I'm doing great and I think you have a good chance of the same. You will need to spend some time investigating your options to land on a treatment choice. I agree with Halbert's comment that you want to hit it hard. In my case, I had the triple play of HDR brachytherapy, IMRT (external radiation) and HT (hormone therapy). But there are other options out there and you want to get smart on them quickly. To that end, ask a lot of questions here...we try to be a helpful bunch.

Good luck on your journey and let us know how we can help.

Ditto from Foxrun.