Well fudge, new member, Gleason 9 (5+4)

Ok, we have a plan.  8 weeks "hormone therapy" (bleh), then radiation therapy.  HT continues for 2 years, Lupron only.

It starts tomorrow morning with a Lupron injection.  The radiation oncologist didn't think it was worthwhile to have casodex also due to increased side effects without a real benefit.

It seems the testosterone "flair" would be a bad thing for someone like me with Gleason 9 and ECE.  Doesn't this encourage a little more "growth"?

So, in reality the treatment odyssey begins tomorrow.

Oh, and I'll have to change my signature.  Since the Gleason score is so critical to the treatment plan, I wanted a 2nd opinion in case the local pathologist had overstaged it.  Well..... the 2nd opinion on my Bx slides, from the recognized top pathologist in the country for such, says "Prostatic adenocarcinoma, Gleason Score 5+4=9 involving two cores (80%, 60%).  Prostate adenocarcinoma, Gleason Score 4+5=9 (100%, 100%, 70%, 10%).  Perineural invasion identified in this case."   The other 6 cores (other side) all benign.

So, actually WORSE than first report.  Positive cores 6 of 12 vs 5 of 12, and 5+4 instead of 4+5.  Real impact probably nil as far as treatment plan, but still kinda disappointing.  That was more-or-less my last hope of changing the diagnosis.

I'd appreciate some links pointing to why casodex before Lupron before starting primary radiotherapy. I'm a little disappointed to be arguing with my doctors. No doubt they have reasons they're doing it that way, and it's hard to argue without better info than they present.

SteelGuy - thanks for getting me back on track. I've printed that article.

I talked to a medical oncologist's office guy yesterday, and he suggested seeing the radiology guy first then set up something with the medical oncologist if I thought it necessary. Now I see it probably is necessary. The urologic oncologist (my primary guy) is a surgeon first and foremost; he pokes stuff and cuts stuff. The radiology guy zaps stuff with invisible rays. So, now I need the third leg of that stool, the medicine guy because I need to affect my system chemically.

So, tomorrow morning I'm going to skip the Lupron injection, and set up an appointment with the medical oncologist ASAP. Goal will be to drive T level down to (man I hate this word) "castrate" level as fast as possible and hold it there, whatever sequence is needed to do so, and pronto.

Yeah, and the 5+4 Bx upgrade is still freaking me out. It just keeps getting better.

The radiology plan is after 8 weeks on hormone therapy to hit the pelvic area and lymph nodes regionally with 40-50 Gy, and then cone down on the prostate itself to a total of 79.5 Gy in 1.8 Gy fractions. That ought to take around 9 weeks altogether.

Post Edited (Redwing57) : 5/1/2013 5:40:48 AM (GMT-6)

I for one am more upset that you are a Redwings guy. The Blue Jackets will, one day rise. Kelp smiling. And keep smiling,too. All the best.

Jim

Redwing,

I'll be interested to hear what your medical oncologist says about the Bicalutamide (Casodex). It makes an interesting combination when paired with Lupron. Lupron makes the testosterone levels go up briefly then it drives them down to castrate levels and keeps them there. Bicalutamide blocks the androgen receptors on cancer cells so the testosterone can't attach and activate them. Since Bicalutamide keeps the cancer cells from reacting to the testosterone it is believed to prevent the initial testosterone flare from stimulating the cancer to grow.

It's a believable theory with lots of anecdotal evidence and wide support in the medical community. But, as you have found, it is proving to be hard to find any improvement in outcomes in controlled studies when Casodex is given before Lupon to control testosterone flare, and much of the anecdotal evidence is older and deals with men put on ADT much later in the progression of the disease than they are now. It could be that testosterone flare is only an issue with men who have symptomatic metastases when they start ADT (a case which is increasingly rare since the introduction of PSA testing).

That said, my medical oncologist has me on Bicalutamide, Lupron/Trelstar and Avodart (ADT3). He did start the Blcalutamide before my first Lupron shot but I think he likes the combination of drugs because they block all the pathways that testosterone might activate cancer cells and the fact that Bicalutamide helps with T flare is a secondary concern.

Redwing,

I think you have been wise to move away from your urosurgeon and put a urologic oncologist at the head of your team. I have learned that involving an immunologist early on may be of benefit as well. This is a relatively new field -- using immunotherapy to boost the effectiveness of radiation in high risk cases -- it's called the abscopal effect. You are lucky to be treated at Vanderbilt with all the terrific resources there at your disposal.

My friend who is on IADT gets 2 weeks of Casodex before his first Lupron shot to prevent any issues that may be caused by a testosterone flare. After that, he gets Lupron + Avodart. Another approach that sidesteps the issue of the testosterone flare is to use Firmagon (degarelix) instead of Lupron. It's action doesn't depend on raising testosterone levels. It's a subcutaneous shot (with an insulin needle) and there may be skin reactions. It may be more effective than Lupron. Here's a recent review about it:

An update on the use of degarelix in the treatment of advanced hormone-dependent prostate cancer

Down the rabbit hole! I feel like I'm falling slowly into a whole new world whose nature will only become apparent over time. Pretty weird, really.

In preparation for my IGRT radiotherapy series, I got a Lupron 6 month depot on May 1. So far I feel.... nothing at all. I understand it likely will take up to a month to really feel anything from it, so for now I'm just glad that I've started the process.

It's kind of strange to think of a thimble-sized injection of a milky looking fluid will shut down my testosterone system for 6 months. Wow.

And to the question that has kept me online and up nights for about the last 10 days.... what about antiandrogen (eg. Casodex) to go with the Lupron? I met with my medical oncologist today to get a maximally-informed position on that, since I can only find conflicting stuff online (as I've noted above).

Bottom line is, well, it depends (is *anything* clear in PCa?). In the recurrence phase, post-primary-treatment failure, metastatic, etc., then the whole schmear is warranted, ADT3 and so on. Antiandrogen indicated to prevent symptoms being worsened with the testosterone flare of initiating Lupron.

However... for the specific situation I'm in:
- Gleason 9=5+4 high risk
- Clinical T3 locally advanced, T3a: (support: 3T MRI indicated bulging and ECE+, Biopsy indicated: 100% of two cores G9 4+5, two 80% and 60% G9 5+4 PCa with perineural invasion)

Which has lead to initiating ADT with primary radiotherapy, and the related guidelines don't seem to support combined androgen blockade. Every drug has side effects, and casodex is no exception. There aren't many cases like this (fortunately...), and the options for curative therapy are somewhat limited. The thing that still lingers in my mind is that the physics underlying it seem to say it would matter - the naughty little G5 cells would rejoice and prosper with some extra testerone. Apparently that hasn't been demonstrated by studies though.

This question of adding Casodex has had me freaked out for days. Some say not doing so is virtual malpractice. Others say it probably doesn't matter. How the heck do we amateurs make that choice? So, I've consulted with my available, rather knowledgeable doctors to see how they align with what I could find in my literature searches.

The clear position communicated to me now by 3 different oncologists (urologic, radiologic, and medical) at Vanderbilt was that antiandrogen is not indicated for my specific situation. Straight Lupron monotherapy will do what needs to be done in this initial 24 month ADT series in combination with IGRT.

If we find later that the primary therapy has actually been insufficient, then the medical oncologist and I will see each other a lot more, and will discuss a different set of options.

For now, I have peace about the status and the plan.

Bone density DEXA scan tomorrow, fiducials being placed Wednesday, CT scan/modeling appointment for planning IGRT in mid-June, and finally start of IGRT series at the end of June.

So, where is that hookah-smoking caterpillar? Alice sees things the say "Drink Me", and weird stuff happens to her. Somehow I can relate now :)

Eventually not only can the anti-androgen become useless, but the PC can start using Casodex as fuel, and some guys find that PSA actually goes down when they stop taking it (although they stay on Lupron).

Redwing,
I'm glad that you received excellent advice from "real life" guys..Fun to read! Don't sweat the casodex issue--my RO didn't think too much of it and only did it because because it was recommended--You don't need "man boobs" anyway....The lupron hasn't been a killer for me, but I guess it's different for everyone...I think that you made the correct decision to "do it right the 1st time"..It never made sense to use radiation after another procedure! The positives are that you will still have your "nerves" and probably never have to wear diapers..Drink plenty of water (fluids) before each treatment please..Keep us informed.
Bill

Here's another follow up thought about my PSA history. This was noted by my medical oncologist and also by the radiology oncologist - my up and down PSA history was of interest to them based on the actual amount found at diagnosis (Bx 80% of half of the prostate volume, about 10cc) and grade (mostly G9, 5+4).

They theorize my PCa doesn't generate the normal proportion of PSA for its size, and it's not a good indicator of my PCa status. The G5 areas may be so 'de-differentiated" that they no longer generate PSA very well (and, by inference, may not really respond to ADT either, but we'll see about that).

From my own searches, based on formulas in this study, (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2664275/) my PSA probably should be nearly 20 based on the tumor volume. That may explain how I was diagnosed with such a large amount of high grade cancer without raising a PSA flag immediately.

Lucky me....

I haven't updated this recently, but today I had my IGRT planning appointment (simulation). It went fine, and my first therapy appointment will be June 26.

They will target the pelvic lymph nodes by locating on the iliac arteries they are near.

I did a Fleet's to prepare, at the nurse's suggestion, but it turns out they'd rather I didn't, since that's not representative of the daily status. Oh well...

Post Edited (Redwing57) : 6/13/2013 12:58:22 PM (GMT-6)

Thanks, Ray.

I did query the office about this prep question. Actually it doesn't matter much to the artery positions since they're fixed to other stuff in there. They said they don't emphasize the prep procedure since most guys don't like to do it! Not a big deal either way.