Newly Diagnosed 3+4

Joe, welcome to the forum, sounds like you’re well on your way to being educated and thinking about all the right stuff and asking the right questions so you’ve got a good head start.
First Dana Farber probably has a great pathology team. I’m a little OCD so if it were me I’d probably ask at the slide to be sent to Epstein anyway. The second opinion with Epstein won’t be covered, but it’s not that expensive I paid $250 six years ago with might be $300 now

Regarding AS you will probably find differing opinions here. AS is a proven viable option under the right circumstances. However for me if you have 3+4, that’s a disqualifier especially 2 cores at 3+4 and even more especially with one of those scores been 50% cancerous. Grade 4 cells can be ornery. So for me I would not choose a S but that’s again that’s me we are all different

With your pathology I think you’ve got some time to explore all of your options make the right decisions prostate cancer is slow growing especially if you don’t have anything above a G7.

Yes speak with the surgeon and speak with multiple radiation oncologist because there are different types of radiation from SBRT AKA cyber knife, To high-dose radiation Brachytherapy, to external beam radiation. And different radiation oncologist may specialize in different methodologies so speak to an expert in each of those. Reading Dr. Walsh‘s book is a great idea it’s very informative. Walsh is a surgeon, you might also want to read Invasion of the Prostate Snatchers by Mark Scholz, for a different perspective.

Keep getting educated, talk to a lot of experts in their field, talk to a lot of us who have been through this, keeping in mind that none of us are doctors, then make the best decision you can with the facts that you have. This will all work out and I can tell you from experience there’s lots of life after prostate cancer. You will look back on this as a bump in the road

Good luck and keep us posted

Joe, Being in a bit of fog right now is typical and we’ve all been there. The number of treatment options can be a bit overwhelming; but, I’m sure you’ll wade through them and select the best one for your situation. This forum is a good starting point and the best decision is always an informed one. Besides surgery you have a lot of great radiation treatments that have at least as good a cure rate as surgery. It does take some investigation and with Dana Faber close by they’re all probably available. HDBT and SBRT have success rates exceeding 90% and the side effects are typically acceptable and short lived. Good luck, keep learning and keep us posted.

Joe, welcome. Sorry you're here but glad you found us.

I too was diagnosed by a Uro in suburban Boston. He was straightforward in recommending I investigate all my options, while making plain his personal preference for surgery -- and recommending a leading open procedure (not robotic) surgeon at MGH. I liked his candor but there was no doubt in my mind that I'd be taking my treatment to Boston.

I called Dana Farber the day I got my biopsy results (there was a bit more urgency in my case given my results) and got appts scheduled with a radiation oncologist, a medical oncologist and a urologist/surgeon. I appreciated that team approach and wanting to make sure you talk to different specialists to get different points of view. I later sought out second opinions, meeting with an RO, MO and Uro at MGH, where they even gave my pathology a fresh read (and graded me G8 whereas Dana Farber had me at G7, but at the hairy edge of G8 territory) -- given those two reads and the particulars of my case, I decided I didn't need to send my slides to Dr. Epstein but I was prepared to do so and would recommend you get his take as well. The bottom line analysis and recommended options from each of Dana Farber and MGH were basically the same.

By the time I made a treatment decision, I think I'd met with 3 Uro surgeons (including the open surgeon at MGH -- he was great and I would've gone with him if surgery could've been scheduled during peak Covid last spring), 2 ROs and 2 MOs, at MGH and Dana Farber/Brigham & Women's.

We do have a lot of great choices in Boston -- and one choice need not foreclose the possibility of soliciting other opinions at different institutions! (I was lucky and my insurance didn't balk at my appts)

Keep asking questions and doing your diligence!

Hello Joe, being in a fog is the good part, the anxiety and panic part are not so good as you try to get control of the situation in your mind.

I never paid for anything (other than some drug copays) in my PCa journey with Medicare and a full coverage Blue Cross Medicare supplement package which included a pre-biopsy MRI, Epstein second opinion, and Decipher genomic testing. Not sure how TriCare works with Medicare so the older Vets will have to help with that.

On the other hand, Medicare Advantage plans are a different story and may have different networks and reimbursement systems. You also to get to deal with insurance companies vs. Medicare. Most do not have a problem with second opinions in concept but can be more difficult if they come from non-network providers and are covered differently.

Although no mention of age, his numbers look very similar to mine. My PSA did hit .2 and I was considering salvage radiation and also did Petscan which looked good, then it dropped to 0.18. I'm doing another PSA test next month but right now I'm under the assumption mine is benign tissue. I think there is a video online of Snuffy Myers referring to this. Best of luck!

Superb advice above, Joe. With Medicare + Tricare 4 Life, you'll have no out of pocket physician expenses, and the Epstein evaluation will be paid for.

Between Mass General and Dana Farber, you have two of the best Prostate Cancer centers in the world, so you can't go wrong. Get on their websites, read everything, and inspect physician's CV's. Talk to surgeons and radiologists. I believe, early on, most of us have a predisposition for which of the two equally successful treatments we prefer. If your gut is telling you radiation, then there is lots more digging and interviews needed to select the best option FOR YOU. The variables can be daunting, but don't let that stop you. As others have said, the fog will clear.

In my opinion, the Walsh's textbook is the bible, since he gives every treatment fair evaluation, and he has had every specialty working for him. "Invasion of the Prostate Snatchers" as the title implies, is far from balanced, and was written by a radiation proponent, who owns a very costly private clinic in Marina Dey Ray. If you want to call and talk to a physician there, it's a minimum of $800, and NOT covered by Medicare or Tricare.

He did publish a somewhat better book, some eight years later, 'The Key to Prostate Cancer', which includes the remarks of many PCa "experts". For me, it stills reads like an infomercial, but is worth reading, and while strongly opinionated, the author does know his stuff.

You do have time, but don't dilly-dally, and best of luck.

Hi Joe and a belated welcome. I think you have received great advice and have a world of options that are likely to cure your cancer so you can get on with life. Once you have Epstein's reading you have the best pre-treatment knowledge of what you have. Personally I would not do AS with your specs. What you should do, IMHO, is speak with a surgeon (maybe a couple) as well as experts in SBRT, LDR Brachy and HDR Brachy. That way you will attain a knowledge base from which you can make sound decisions. It's a PIA to see all those docs but this is a potentially life changing decision and you want to get it right the first time.

I agree that "Invasion of the Prostate Snatchers" and "Keys to Prostate Cancer" by Scholz give you the extra balance you need to offset Walsh's book which, while excellent and detailed, has a surgical slant in my opinion.

Good luck. Stick with us and we will help you through this.

Jim

Epstein only takes a few days to get back to you, so I'd guess that would make sense to go to first.

Also, a mild word of defense for Scholz. I've been a patient at Prostate Oncology Specialists for 8+ years, although Scholz is not my doc there. It was by far the best and most helpful part of PC journey. (That said, I was only so-so on his book.)

While I would not recommend AS for anyone with two G7 (3+4) biopsies, I think that if your are (say your 2nd opinion downgrades you), I would definitely get a genomic test (e.g. OncotypeDx or Prostate Biopsy) to find out the risk of your cancer developing mets within 5 years. Note especially that one's risk (low, intermediate, or high) cuts across all Gleason scores (e.g., I was definitively graded a G9 (4+5) after surgery, yet my Decipher met risk was low.

Djin

JoeBos said...
@Michael_T - thanks. I am reading Scholtz second book and given it has sections by different experts, it does provide different perspectives on the issues.

Requested appointments at Dana Farber (DFCI) and Mass General Prostate Centers (MGH) and waiting to hear back. Also, coordinating with Dr. Epstein's lab and my local hospital to get the slides down to him.

Researching doctors at these two centers while waiting on the appointments. Several folks mentioned DFCI in their responses,. If you went to either of these places, which Drs. did you work with? Any you rejected?

Also, aside from the biopsy, should i be seeking any other diagnostic tests before making a treatment decision?

Thanks!

Joe, here's who I met with--all of whom I had plenty of confidence in and good to great degrees of comfort:

DFCI: Paul Nguyen, RO; Hmisha Beltran, MO; Adam Kibel, Uro
MGH: Jason Efstathiou, RO; Matthew Smith, MO; Francis McGovern, Uro

Once I decided on surgery, I ended up having my RALP done by Dr Kibel, and he was excellent -- absolutely no regrets at all -- though I might have gone with Dr. McGovern if Covid hadn't been a scheduling factor, as McGovern felt like a warm, old school, top notch doc that I clicked with. That said, Kibel (urology chief at the Brigham) was fantastic and similarly well-experienced in doing these surgeries (which as you know is critical). The others I met with with were similarly all top notch in my estimation and as per my research.

One surprising find, for me, was that I could begin to develop a sense of some of these folks by searching them out on YouTube. Weird to conduct important medical research on YouTube, but I searched out information wherever I could. For instance, I found some long symposium videos put out by DFCI to be really helpful -- e.g., their 2019 sympsosium at Brigham & Women's. If you're interested, to find it try search terms like: DFCI prostate cancer Kibel, D'amico, and Pomerantz. I would love to meet Drs. D'Amico and Pomerantz.

Thanks to everyone for their comments and suggestions. Having gone through this before, you guys sure have a deep understanding of the difficulties in deciding what to do. It's good to know that my difficulty is not unusual. I have a series of appointments at Dana Farber Cancer Center with Dr. Himisha Beltran (MO), Peter Nguyen (RO) and Adam Kible (Uro) in about 2 weeks. In the meantime, DFCI is in the process of developing their own opinion on my biopsy slides. Will keep you posted. Thanks, again!!

Joe, I have a friend who followed his urologist’s advice and chose AS with a Gleason 7 for over two years. Not good. Midway in year three his PSA spiked. A second biopsy came back at Gleason 8. Opted for surgery — did not go well. Point is, as others here have written, a Gleason 7 is a serious disease. Wishing you well.