New member JohnNW recently diagnosed looking for options.

Recently diagnosed. 3 out of 12 positive. 2 of them rated Gleason 6 and one is Gleason 7 (3+4). Scans are both negative. Early to intermediate stage. Docs are offering surgery (which seems excessive) or High density temporary brachytherapy followed up with Image guided radiation.
Can anyone help?

Gave your thread a title.

Welcome to the forum. Glad you found us but sorry you needed to look.

--PeterDisAbelard.

Post Edited By Moderator (PeterDisAbelard.) : 12/26/2015 5:02:35 PM (GMT-7)

Welcome to HW, sorry you need to be here.

A couple of other pieces of info would help us understand your situation a little better. How old are you? What is your PSA? Did they tell you what stage you are?

With the info you've give, all I can say is either surgery or radiation would likely be curable. The other point is that PC is a generally a slow growing cancer so you've got time to make an informed decision. What will drive you nuts is that there is no clear scientific answer to your question. There are studies, statistics and opinions on what you should do, but often it comes down to the treatment you'd feel the best doing.

I choose, IMRT because I wanted to avoid surgery (I have heart/lung issues that make surgery last on my list of things). So far I am happy with my choice. I have a brother with similar numbers and he choose LDR brachy and three years late he's doing just fine.

But I am not a doctor, just some random guy on the internet.

I suggest you to talk to a radiation oncologist for another opinion. There are a number of radiation treatments to consider, IMRT (IGRT), brachy (HDR, LDR), SBRT (cyber-knife). Each has its trade-offs.

Best thing to do now is learn all you can. Check out the sticky threads at the top of the forum. Most important: Don't let anyone push a treatment at you. You have so many options and each has it's good point and bad points.

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

Hi
Age 57. PSA 4.5 it's been steady for a year. I'm on the low end of the intermediate stage. Family history. Brother had surgery

My doc is Adam Dicker at Jefferson in Philadelphia. He's an expert in the field and has written books on the subject.

Thanks

Great question. I'll have to ask that. Thanks for the insight

Hi John. Re: Second opinion......Johns Hopkins isn't all that far from Philly.

Good luck!

This is one of the most difficult parts of the PCa journey - deciding what to do about it. Don't drive yourself crazy and "have a flame out" (as my urologist put it) in your research.

My advice is to go to a national center of excellence (like MSK, MD Anderson, etc.) and discuss your situation with the various specialists. They work together as a team and don't promote one therapy over another.

JohnNW said...
Docs are offering...

Unless you belong to an HMO and are tied to those docs, it's up to you to seek out doctors who are specialists in all the other potentially curative therapies. I met with 6 different specialists before deciding - I suggest you do the same. If you say what city you're in or near, maybe we can suggest some. With a GS 3+4, you have at least a few months to decide.

Specialists in which therapies? There is no such thing as a generic radiation oncologist - they all specialize in either LDR brachytherapy, HDR brachytherapy, SBRT, IMRT or protons. You have to talk to specialists in each - I've found that a specialist in one therapy may have only limited knowledge about other therapies.

You have some great places in Philly ...
• At Fox-Chase you have Eric Horwitz who does HDR brachy monotherapy for your type of PC. They used to be excellent for LDR brachy as well - I don't know if they still are.
• The Philadelphia CyberKnife Center has published some impressive results:
journal.frontiersin.org/article/10.3389/fonc.2014.00312/full
• UoP used to offer protons but no longer does for prostate because results were no better than IMRT.
• I don't think IGRT/IMRT, at least in the way it's been traditionally done (40-44 treatments), is justifiable given the impressive results of hypofractionated regimes and of SBRT (5 treatments).

Because you only have one core of GS 3+4, you may be a candidate too for focal ablation, an experimental treatment with very low SEs.

I don't know if Dr. Dicker is a surgeon or a RO (nobody said). To get a good exploration of options...and this may be what you had at Jefferson...the ideal way to get all questions answered is to have all the specialists in the same room at the same time to answer all questions and present all options. IMO, this gets away from plain advocacy of one over the other.

I would agree to the suggestion to at least send your slides to JH for second reading, if not go to JH yourself (Baltimore isn't all that far from Philly) for a workup and consultation.

The thing I keep saying to newcomers is the old ad slogan: go big or go home. You owe it to yourself to get to the very best facility and team you can. On the eastern seaboard, you've got plenty of great options in not that much area. Jefferson may be good, but within a few hours of travel you have greatness available at Hopkins or in NYC at MSK.

I'd also suggest getting yourself a big accordion folder for all your paper...and get copies of everything--diagnostic reports, lab results, everything. And a spiral notebook to write down questions and answers. You're going to be inundated with information.

Oh, and slow down. You have months to sort through the options and make a decision. Not weeks.

Gentlemen:

Such great advice and cause for optimism. Thank you all very much for taking the time to reply. I am in the process of compiling all of your suggestions and doing some research. I will have more questions.(do I just keep hitting reply?)

Some answers to questions that were posed

My age is 57
I have a strong family history of PC (brother, first cousin, grandfather)
My PSA is currently 4.5, Last year it spiked to 11.5 and the went back down??
I met with a surgeon, a general urologist and Dr Dicker who specializes in HDR brachy. (He has written several books)

Hope that is helpful

John,
Not sure what your insurance situation is, but my husband was treated at U of Penn. He chose surgery with Dr Alan Wein (open), but before the Dr would accept his decision, he insisted we meet with an RO (Dr Vapawalla). His outcome was very good.
Coyotegirl

Howdy John,

Your situation is similar to mine. Strong family history (Grandfather, two Great Uncles, Father, Younger Brother who had PC at age 45). I was diagnosed at 55 G6 T1c both sides about 35% of volume psa only 1.6, up from long baseline of 0.6-1.0. All of family above died before age 64 except younger brother (open surgery) is 54 and doing fine. I am an engineer, interested in medicine and love to do research and spent a lot of time reading and consulting doctors. Because PC is multi focal (lots of smaller tumors) and because of the aggressive type of PC in the family, I chose RALP surgery. My rational is that RT of any kind goes after the tumors, not necessarily all of the tumors and you still have prostate cells after RT. A proper RALP removes all of the prostate cells and therefore is a cure. I was dry at +1month and erectile function is improving well at +1Yr. I have IBS and did not want to risk making that worse, so I wanted to avoid radiation to the rectum.

We are all individuals with differing values, concerns etc. I chose the RALP because I believed (and still believe)that it was the best shot at a cure for me (psa <0.1 at +1 year). I no longer have any prostate cells and am unlikely to get PC again, that is a good feeling for me.

Best Regards,
Pat