How to Decide?

I have been reading the forum for a couple weeks now and appreciate the insights and perspectives that everyone provides.

So here is my story.

I am newly diagnosed, received the news on July 11th. Gleason 6 in one core of 12, with two other cores suspicious. Readings were confirmed by Hopkins. I am just beginning to get consults and see a radiation oncologist on Aug 3 and consult with a doctor at the Brady Urologic Institute at Hopkins on Aug 10.

While AS would be my preferred approach, there are complicating factors, I have BPH which is getting bad and needs to have something done, again. I had a TUNA during late 2014 and was contemplating a Urolift for the problems--that is off the table now. Add to that I have been receiving TRT for 20 years, and my T is really low, it was 50 when checked during June after stopping replacement therapy. I am in good health otherwise.

I have been reading fervently about continuing TRT and will address that with the doctor at Hopkins. I am also in contact with my urologist who is still of the mindset that T is like throwing gas on the PCa fire, but did agree there was the possibility of resuming TRT if I choose surgery.

That written, I'm thinking the best approach is RALP. It seems to address everything and I am becoming comfortable with it.

Thoughts?

Denis

Thanks for the comment. While I am getting comfortable with it, i wonder what I am missing and what else I need to consider before finally deciding on a treatment.

halbert said...
Bob,

I presume that the typical treatments for BPH haven't had a lot of success-such as finasteride, etc?

Reality is that with a single G6, low volume core, the PC isn't the issue, the BPH is, so nothing has really changed--you have a BPH problem, the question is how to treat it? TUNA is not a term I'm familiar with-I assume it's a BPH treatment? TURP, green light laser, other newer things might be worth looking into.

I'd reiterate: I'd focus on the BPH-that's the issue, not the PC. Yes, a RALP will cure both conditions, but it might be throwing the baby out with the bathwater.

Hello Bob and welcome. I agree with Halbert that RALP seems like overkill to cure BPH. Seems like focusing on the BPH and treating the G6 as a chronic condition would make a lot of sense. I assume at Brady you will have a thorough AS discussion?

Jim

Bob,

I think there is probably a way for you to get more or less what you want but it may require a vigorous doctor-shopping effort on your part. The testosterone-feeds-cancer position has been largely debunked by recent research but most practitioners continue to use it in large part (I think) because no strong consensus has congealed about a competing theory. This gives doctors a choice of either clinging to the old theory that they more-or-less know to be wrong, or to simply cast themselves adrift with no guidance at all. You'll have to look for doctors who are early adopters of one of the newer theories.

Here is a nicely done study that will show you, if nothing else, how confusing it all is:

Testosterone and benign prostatic hyperplasia

I agree with Halbert that BPH, not PCa is your greater problem.

Have you considered prostate artery embolization (PAE)? Two hospitals in the Washington, DC area did a clinical trial a few years ago, and now offer it. I spoke last year with an interventional radiologist from Los Angeles who said that his practice is offering it, and enthusiastic about the results.

Another option to think about.

https://www.paeprocedure.com/

Thanks to you all for your encouragement and advice. I'm going over the material you recommended and will be posting question as I begin to digest it.

I am happy that I have time to hopefully find the best treatment.

Bob,

As some one with a similar situation I understand you what you are going through. I was diagnosed a year ago with 1 of 12 cores G6 and Prostate volume of 67cc. My Uro advised active surveillance and Dutasteride and Rapiflow to help with the BPH and urinary retention. So far that seems to be working for me.

I have read about the TRT and the debate around that and feel it is something I would continue with if it were me. at this point you appear to have a very small amount of Pca and you need to look at all of the potential side effects of the different treatment options and make a decision based on the information available to determine what will give you the best quality of life. each of us is different and so is our disease. Talk to experts in each of the fields you are considering because regardless of what you choose the EXPERIENCE of your Dr. could make a big difference.

Best of Luck in your Journey!
Gemson

I think you first need to decide whether you are going to treat your PCa, ignoring the BPH. Given your biopsy results, active surveillance would seem to be an option. No need to hurry into a decision. Then, after you have decided on what to do about the PCa, you can decide what to do about the BPH. I suppose that, should you decide you should treat the PCa, it might make sense to prefer surgery over radiation because it would remove a troublesome prostate. For what it's worth, a friend of mine had greenlight surgery with good effects.

Bob - My situation is somewhat like yours. I was diagnosed with a couple of cores of G6, but I also had one core of G3+4=7. I had also been on TRT for about 5 years at time of diagnosis.

I, too, ran into docs who said that they would treat the PCa this way or that way but that they would immediately stop the T. I asked them if they would administer ADT (Androgen Deprivation Therapy) to a gonadally normal man with my pathology, and they said "No." I then asked them why they would force me into the same T levels as ADT, with no medical necessity for it, and they said "This is what we do." I did NOT become their patient.

My story is a long one, but I'll jump to the conclusion. My RO, through some colleagues, referred me to Dr. Abraham Morgentaler (in Boston, affiliated with Harvard Med) for a consult about the TRT. Dr. Morgentaler has spent his last 20 years or so researching the intersect of T with PCa. He and some other doctors have published papers on the "Saturation Theory" that shows that (for low and intermediate risk PCa patients who would not otherwise have been prescribed ADT) as long as the patient's T level is above castrate level, their serum T levels have no impact on the development or progression of PCa. You can Google the "Saturation Theory + Morgentaler" and will probably find the papers. He totally disagrees with the old advice about T being like gas on a fire for PCa, and can very eloquently say why he feels so.

Dr. Morgentaler is very available for consultations if you call his office. In my case, with his written advice and comments (sent directly from Dr. Morgentaler to my doctors) on my specific case, my RO and my uro are happily managing my case with me. I have continued my TRT before, during and after treatment for my G7 PCa. If you do your homework, you may find support to do the same, if you are so inclined.

Given what I went through before I was put on TRT, I didn't want to go back either.

In the Shop

Thanks. I’ve read a lot of your other posts and you have a constructive and direct way of laying out about collective situation.

I guess I want it all. No PCa, solve the BPH, and get back onto TRT so I feel normal again.

I’m feeling cornered by the doctors into RALP. But it will solve at least two of the problems even though it may be overkill.

Dr. Pavolivch treated my neighbor for bladder cancer. Good results from what I can tell. I can't help you make decisions regarding your care, but I can attest that my experience at Johns Hopkins was first rate.

garyi and mdnative

Thanks for the additional information. I will look into Dr Parian. How will a gastroenterologist help?

Well, Bob, depending upon your proximity to Boston, Dr. Morgentaler's practice is named "Men's Health Boston." Their practice includes urology, TRT, and other specialties that are part of the "men's health" banner. You could contact them for either a consult or maybe a local referral. (Two disclaimers - MHB is sort of pricey, and I have no affiliation with them other than the doctor-patient relationship.)

Also, sometimes if you find one doc you like, they can refer you to others you may like in other specialties. My cardiologist referred me to a new internist when my prior doc moved. My urologist referred me to my RO, whom I really like, etc. It is certainly worth the phone call to any doc you feel comfortable with. They all get a lot of their business from referrals.