new diagnosis gleason score 9

I was recently diagnosed with prostate cancer  gleason score 9  12 samples taken and 6 out of 6 on right side are all positive  It appears like it is outside the prostate wall but still localized   although he did say there is a chance it has already spread  my psa was 16.9 and I was on finasteride which he said meant my real psa was probably in the 20's   I am 68 years old  in good health   Uroligist is recommending hormone and radiation treatments  as he said because it is outside the prostate wall  he would need to be very aggressive with the surgery and then would probably need radiation also    He is recommending Firmagon  2 shots to start and then 28 days later another shot   then trelstar    radiation would start in about 2 months     Has anyone had any experience with Firmagon

Thanks for your support

Our cases are quite similar..Both G-9, both on Finasteride..My PSA was a little lower..I chose to have surgery, hoping for a quick cure but knowing that was a long-shot..My surgery failed and I quickly moved on to Ht & RT. With perfect hindsight, I would have skipped the surgery...

Radiation treatment has come a long way, the equipment they use far more advanced than just a few years ago..This new equipment allows far more effective treatment..

Firmagon is aptly named...Your wood is GONE! But that's true of all the testosterone lowering drugs..Firmagon is just the newest one, very expensive, insurance companies usually will not approve it unless they can get a big backstage discount..It's the lack of testosterone that kills the cancer, not the drug itself..Studies have shown that the combined treatment of Radiation and HT is about 30% more effective than just R/T alone..The debate is how LONG you need to be on HT to achieve this benefit...

Two PC books, one by Walsh, one by Chodak will educate you as to the road ahead...

The best of luck to you...

As bad as it may seem, Gleason 9 is very treatable.

I caught mine a little earlier than you, and at least for now, have been successfully treated with surgery at Cleveland Clinic.

Be sure and educate yourself. Get second, maybe even third opinions. Talk to surgeons, radiation oncologist, and medical oncologists. I too would recommend going to a major cancer center, who handles cases like yours every day.

Good luck and welcome to HW.

I have had 3 shots of firmagon so far No real bad side effects as of this time Hot flashes which are tolerable and diminished sex drive Met with radiation oncoligist and he recommended 45 treatments and he will treat the prostate and surrounding area I am having the gold markers put in on Feb 1st and will start radiation in March Oncoligist likes to wait about 3 months after starting Hormone treatments to shrink the prostate as much as possible I also will be switching to trelstar on my next hormone shot on Feb 7th as that will be a 6 month shot Both the uroligist and the radiation oncoligist say I should stay on Hormones for at least 2 years

I finished all radiation treatments and had my last hormone shot in feb 2013 psa was < .05 in may of 2013

In Dec of 2013 it had rose to .31 rechecked in june 2014 it was .61 had another check in oct 2014 and it is now .79 Has anyone experienced this and what was there conclusion Is the cancer back? I am going to the urologist this Thursday

Thanks

I agree, it's -possible- that your testosterone is very slowly coming back a bit, which could cause psa to rise a bit, but not necessarily mean cancer.
Might want to ask about getting a couple more psa readings, and get testosterone levels checked at the same time, to see if both are rising, which might explain it.

Sounds like it may be time for one of the advanced scans to see what is causing the PSA to rise, perhaps an F18 sodium scan that is available in a lot of places, hopefully some facilities in SE Pennsylvania.

The C-11 Choline scan is only available at Mayo Clinic in Minnesota and is generally covered by Insurance. I think Dr. Kwon would want your PSA a little higher at about 2.0 or so, before he would take you as a patient.

Gunner34 has had 8 or so C-11 Cholines at Mayo for his very advanced PCa.

In Phoenix AZ, not covered by insurance but very helpful in my case is the C-11 Acetate test. With a half life of only 20 minutes, only offered in a few places. Generally costs $3,000 but since I was doing it same week as F18, cost me $2,500 out of pocket.

Beisdes the test itself you are also buying into the riadiation technician who interprets the resutls, and I highly recommend Dr. Fabo Almeida at AZ Molecular Imaging who work station reminded me of a NASA control panel he looked at so many scans concurrently.

Dr. Fabio was able to disprove that I had any bony mets thus changing my diagnosis from stage 4 treatable but not curable, palliative only, to stage 3 locally advanced PCa potentially curable with radiaiton. The F18 showed suspicion of Lymph Node involvement and the C-11 Acetate confirmed 3 micro LN's contained within the pelvic girdle.

The C-11 Acetate is also deemed most accurate at PSA > 2 but I had mine when PSA = 0.27, knowing that the Lupron since 3-28-13 was likely masking more mets. My thinking was that the C-11 could not detect them, the SBRT would zap them anyway.

If you do isolate the cause and end up needing radiaiton I highly recommend SBRT which can be completed in 5 fractions @ 8 Gy for primary treatment and potentially less fractions if only zapping one spot. Thanks ot Tall Allen, I went to his idoctor Dr. Chris King at UCLA and was very pleased with no side effects so far.

You may want to compare notes with Mel (Compiler) who is going through this now, working with Dr. Kwon at Mayo and his medical oncologist Dr. Richard Lam at Prostate Oncology in Marina del Rey, CA.

I had the same medical oncology firm but went to Dr. Lam's associate Dr. Jeffrey Turner and they each collaborate with Dr. Mark Scholz on all their cases.

Many guys here see one of the three of them, for example Wampuscat, WorryWart, Ray the Steel Guy, Sonny3, etc while others see Dr. Snuffy Myers in VA but he does not take private insruance.

Depending on where you already had the IMRT radiaiton, you may or may not be able to get a re-do with SBRT that totals 40 Gy or less depending on how many 8 Gy fractions are needed every other day, as opposed to IMRT that generates about 80 Gy over 35 fractions 7 weeks evry work day.

For high risk Gleasons as far as I know SBRT is only available in three places

Dr. Chris King at UCLA who did mine last month
Dr. Allen Katz in NY (posts a lot on website cyberknife.com where Tall Allen also posts some)
a group of doctors in Toronto (think Houseboy was treated there)

I asked Dr. King is there was anything being done with 7 week IMRT in 35 fractions totalling 79-81 Gy that he could not do in 5 fractions and he confidently siad no there was not.

So even though it involved some travel, partially paid for by a Patient Advocate Foundation $1,000 grant, more importantly it gave me back 5 weeks of my life not being spent on IMRT where I understand about week 5 or so one gets very fatigued.

LupronJim

shadowman, good to hear! For what it's worth, I think your urologist has a reasonable approach.

Enjoy the holidays!

Jerry