The Gleason 9 Crew - Welcome and how ya doin'?

Great posts
I'm a 70 yo Gleason 4+5 =9, dx 6/24/13 after first transrectal biopsy precipitated by PSA rising from .4 to 2.16 to 5.4 to 6.6 from 2010 to 2013. Had
open RP 9/7/13 at Johns Hopkins; path. found no lymph node involvement, SV involvement, and 4mm positive margin at base with Gleason 7. I'm dry one week after foley removal. Played 18 holes of golf today, 3 weeks post op. Tentatively planning adjuvant IMRT in 3-4 months.

I didn't see my name on the list (4+5). My detailed information is in my signature block.

RedWing ...thanks for the thread ...

Found it: Went in for my 50 yo checkup; doctor checked the PSA box and here we are. I'd been on Androgel and had family history of PCa so i thought she was checking it yearly. Had missed it on the DRE year or two before. Quite a surprise when i figured out what PSA=36 meant. Even more so when it came back 12/12 G9.

After doing a jujitsu move to switch from an HMO to a PPO insurance, the first cancer center did all of the scans and a biopsy of a lymph node.

Treatment Choice: First cancer center said that it was too far spread, so all that they could do was ADT -- basically Casodex and Lupron. I spent some time reading here and went to see Scholz for 2nd opinion. With his help we got them to do radiation IMRT as well -- it was more than that center had ever done.

How Doing: 8 months after end of IMRT still on the Lupron. PSA is percolating 0.02, 0.04, 0.06 -- we'll see if it's a trend or just bubbling around over the next few months. The HT is difficult on mood and motivation and attention. Cialis is a good thing; just sayin'.

Well ... had to edit this ... 24 hours later my PSA test came back at 0.2 -- not horrible, but it crossed the trip line and now we're on to next stage of this battle ...

Not too happy about being a part of this crew but am thankful for the help and support I have received in the past.

We found my husbands cancer after they discovered blood in his urine when getting lab work done for annual physical. He had been having some trouble peeing but not anything that extraordinary for a man his age.

Due to the bone mets, we were told that hormones were are only real option so the choice of treatment was pretty easy.....or hard depending on how you look at it.

As of our last appointment, it appears that he may not be responding to lupron. PSA is starting to climb and suspicious spots have shown up through out his spine and also in his liver on the last CT.

Some follow up is going to be done mid October once we get to Phoenix but it looks like Casodex will be added at least

Nancy

Gl 9 came to us following surgery pathology,May 2012, after biopsy told Gl 7. Original psa was 11, then 6 weeks after surgery psa was 33. Bad news kept on getting worse.
Lupron started July 2012, SRT completed Dec 2012, psa July 2013 <0.1. He is 57 years old, feels good.
I found this forum about 4 months into our pc journey. Very helpful to me, but became some what obsessed for awhile, searching for answers, hope. Have still not seen a psa so high straight after surgery. Should add bone scan clear, and MRI in July showed positive lymph node, left illiac. 0/3 lymph nodes in pathology.
So , what is it that sends shudders down the spine with a mention of Gl 9 ? Is it the inevitability of rapid treatment failure at every step?
My husband believes he will be fine for many years to come, I nod my head , but my fears say otherwise.
Thanks for this thread and to help this forum provides.

Nickname Devastated1
Dx January, 2010
G9, 5+4 Wahooo!

How did you find out? I have a huge family genetic history of PCa. My dad and his two brothers had it, of which one died due to PCa. I have four older brothers, the next to oldest was Dx in 2001 with G7. Because of my dad and his two brothers, I started an annual check and baseline at age 40 and watched my PSA increase year after year. Unfortunately, I did not know about "rate of velocity" (ROV) nor did my internist. In 2009, my PSA jumped to 3.9 and something told me to get tested in six months instead of 12 months. Good decision since my PSA jumped to 5.3 (from 3.9) in six months which led my internist to get me scheduled for the biopsies.

Five days later, my world changed. The U.O. oncologist told me about men with familial history need to focus on ROV and not wait until a man reaches 4 or above for the biopsy and told me to go back to my internist and explain ROV which I did. At first he was very defensive and got a little angry until he told me that he was going to pull up his $300,000 software and find out what the protocol was. He did that while I was in the room and I could see the Oh Shoot moment and then he went back and reread the guidelines and then looked at me and said. "I just made a change in my practice".

How did you choose your treatment? Very carefully thanks to this forum that told me to slow down, take a deep breath, educate myself and then go schedule exams with surgeons and radiologists. I followed that sound advice and asked many men that I knew that had gone through this. I met with two different U.O.s on 3-4 visits and did the same with radiologists. That confused me since the surgeons were all for surgery and the radiologists were for brachatherapy. So, I went with my gut feeling and went for the surgical option.

Prior to my RRP, my U.O. was participating in a small Provenge study of 40 men that were recently dx and were committed to having a RRP. So I delayed surgery and had three treatments of the Provenge product and then had my RRP.

How are you doing? Better than I thought I would be. Started androgen deprivation in Jan/2013 and finished my eight weeks of IMRT/IGRT in May/2013 so my energy level is still low but coming back week by week. I am currently undetectable and only pray that my good luck will continue. I look forward to the day that I don't think about cancer throughout the day.

For being given an approximate 5 years of longevity, I am very excited to be where I am at and not worrying about what my come down the road.

No offense, I wished I was not in this chapter of this exclusive PCa club.

Guess I should join this group....gleason 4+5.......current treatment is Zytiga/prednisone and just received my first shot of Xofigo (Radium223)

So far so good.....PSA down to 16.9 which is down 4 from last month. Been a long slow drop from 381 when I found out Bone mets.....but each month its gone down.

Im not sure what else to add redwing....I think I covered all of it. As I said my hot flashes only came once I started Zytiga...never got them from just HT so I was one of the lucky ones. I have always had body aches though..since I started HT. For some reason its worse when I lay down. My drs. cant really explain this except to say HT will cause joint/body pain. I have plenty of Oxycodone that usually takes care of that problem.

As far as the emotionalism....I cant explain that....just know its real and started about 3-4 months after 1st Hormone shot. At first I thought I was depressed but then I found myself crying at movies and stuff....something I had never ever done....so I knew it was the HT.

Its not something I'd tell my Drs. about though....chris

Hi DYank and sorry you're part of our club. Is HT in the mix for you as well as radiation? As a G9 after surgery, that would likely make a lot of sense.

Michael

Michael T,
Husband would prefer not to have the HT, so holding off until after the RT (I've got my fingers crossed on that decision). If the October PSA goes up, we'll look at it more closely. The recent PET scan did not show anything so metastasis producing the PSA is microscopic and expected to be in the prostate bed. HT may be in the mix, just not yet.

Redwing, nice idea for a thread, thanks for starting it.

How did I find out I had PCa:
I had been experiencing what I thought were just classic symptoms of BPH, for probably close to a year (I so regret not having that checked out), then mid - Oct 2012....

One day, out of the blue, while walking the halls at work, I got this severe pin point pain between my groin and hip. The onset was so fast, I was totally convinced that I had sprained a muscle. Eventually the pain became more general and seemed to be located primarily in my hip. I was limping around work, and getting a lot of questions from co-workers as to what was wrong with me.

In Dec 2012, with some strong encouragement from my wife, I had my 1st physical in 20 yrs. This visit included a DRE, schedule of my first PSA and an x-ray of the hip. Blood was drawn on Christmas Eve, by the Grinch I guess.

The DRE confirmed my having an enlarged prostate, but it was “age appropriate”, good news I thought. The hip x-ray showed nothing wrong, hmmm, then why the pain. Then my blood tests results came in the mail, with one number on it being way out of the norm; PSA = 84.7ng/ml (with the report saying the normal range is 0-4ng/ml). Needless to say, I quickly learned a lot about the PSA implications.

I got a quick referral to a local Urologist... and it was a no brain'er for needing a biopsy.
My biopsy however was moved out a few weeks because the Uro was going to be out of the office. Oh the dreaded PCa test / test results waiting game begins!

It was during this extended waiting period that I found HW. One of my son's was doing some internet research about Prostate Cancer and told me of this forum. I came to HW, and like many others, lurked about silently for quite some time, until I got the nerve to post a question. I got a lot of great advice from HW, and to this day I still appreciate all of the replies!

It seemed that every test kept coming back with more and more bad news; biopsy was 12/12 positive G9, CAT/Bone showed cancer had spread to hips, spine, ribs and pelvic area -- Stage IV --

Needless to say, such a diagnosis is quite a shock for yourself and loved ones. My wife and I did a lot of holding and crying in those early days after getting the news.

Treatment Choice:
Went for second opinions with Sloan-Kettering specialists and because of the bone mets, they told me that they agreed with my local Onco and there really was only one choice of initial treatments...so I started Hormone Therapy (HT), ADT2, Lupron and Casodex.

After just a couple of weeks post 1st Lupron shot, my hip pain began to disappear and within 2 months it was 95% gone, and PSA had dropped from a high of 101 to a low of 0.2, so I was pretty happy about that.

How am I doing now:
HT has been quite tolerable, with hot flashes being the worst SE. I started having some knee pain recently, but the MRI did not indicate it being cancer, so treating it as an arthritic condition.
A second set of CT/bones scans, 7mo post-HT, shows no new bone mets, with some reduction in intensity of the ones there. The CT also showed some reduction in most soft tissue areas. PSA is not settling down as low as I'd like, knowing that achievement of a low PSA nadir after hormonal therapy has prognostic significance. But overall, I am very thankful for the results I've gotten so far from HT.

How did I find out I was a Gleason 9?

Six years ago, at the age of 55, I was hospitalized for three days with a prostate infection. While I was there I acquired a urologist and had (as far as I know) my first PSA test. It was somewhere around 4.7 but, since I had an enlarged prostate and a major infection, the presumption was that clearing up the infection would fix everything. Because my prostate was enlarged my new urologist put me on Avodart. He told me that once the Cipro had knocked back the infection and I had been on Avodart for a couple of months my PSA should go down -- probably becoming undetectable. It did go down -- to 1.4 -- but then gradually started to creep back up. 1.7, 2.4 ... when it hit 4.7 we did some more cipro. It only dropped to 4.2. We did my first (of four) biopsies. It was negative. As was the next one six months later when my PSA continued to rise. The third one, nine months after that, was positive for Gleason 6 in one core (out of 18) and that core only showed 3-4% involvement. My urologist was reluctant to treat such a low volume Gleason 6 so we decided to wait three months and do another PSA and another confirmatory biopsy. My urologist took lots of samples from the area that had shown positive before.

In the meanwhile, my daughter, who was in medical school happened to be doing her pathology rotation with a Mayo-clinic-trained pathologist who offered a free second opinion on my third biopsy. He asked me to get him 'recuts' (different samples of the frozen cores) and his result came back Gleason 7(3+4) in the same core. As had the first pathologist, his notes said there was so little cancer present that he almost missed it.

Also in the meanwhile, I got a second opinion from another surgeon and a radiation oncologist. The surgeon strongly recommended a 'wait and see' approach, while the RO was willing to treat me (either external beam or brachy) but only after 6 months of hormone therapy to shrink my prostate. My father-in-law having died of prostate cancer after several years of HT (which made him miserable and very difficult to get along with) I was hoping to avoid the whole hormone experience so radiation and brachy were non-starters. I also talked to my urologist about HIFU which was not yet available in the US but was doing well in trials and might be soon. The idea there was to do AS for a while and see if HIFU wouldn't be approved in the US. (A local doctor was involved in the trials and would probably be one of the first adopters.) But, my prostate was also waaay too big for HIFU (and, again the HT which I was looking to avoid) so HIFU lost most of its appeal, too. It kind of came down to AS or surgery.

I made my decision during the consult to discuss my fourth biopsy. The fourth biopsy was negative. On the other hand my PSA had climbed to 8.0. But on the third hand the blood was drawn for the PSA a bit soon after the biopsy. I had talked to two surgeons. One recommended against surgery. The other (my uro) was willing to do the surgery but told me he could not ethically make a recommendation. Then again, I was getting pretty tired of having guys in white coats poking around up my butt with spearguns. Urgh. It wasn't an easy decision.

In the end I did it for my wife. Her dad had died of PCa and aggressive treatment of my cancer would help her worry less about me.

I had the surgery four months later, on June 14th, 2012, and three weeks after that, at the consultation to review my post-op pathology report, I found out that I was a Gleason 9 with quite a large cancer and positive margins.

How did I choose my treatment?

The section above described my decision-making process for treating my tiny-volume Gleason 7(3+4) cancer. It was a hard decision. No two doctors told me exactly the same thing and none of them seemed to feel strongly about anything. I was on my own, twisting in the breeze, and it was really, really hard.

Once I was a Gleason 9 with positive margins it got a lot easier. All my doctors said the same things. It was always "This is what we are going to do" and the only input I had was to say "I guess so" when they would finish their plans for me with the pro-forma question "Does that sound OK?"

The plan (which my urologist, my radiation oncologist, and my medical oncologist all agreed on) was to start hormone therapy right away (!!) and work really hard on improving my continence for three months then to do adjuvant IMRT (66.6 gray, the number of the beast, we hoped) and to follow that up with continuing hormone therapy for a total of two years of ADT3. This gives me pretty good odds of a durable remission and, almost more important, makes it much less likely that I will need to go on palliative ADT in the next ten years.

There was never a question that this was the plan. The part I didn't like was the ADT3. I console myself about the hormones (which I hate, hate, hate) that after two and a half years of them I can hopefully be done with them.

How am I doing?

Oh, pretty well, I guess. I remain incontinent although I am down to a pad or two a day. I have an appointment with my uro to talk about a sling early next year. That will be a full year after my radiation finished. Between the hormone therapy and the prozac to offset the depression that the hormones cause I am pretty much incapable of any pleasurable sexual activity. I use a VED and Trimix for rehab (VED four times a week, trimix three). I had some nerve sparing on one side but I was a Levitra user prior to surgery and after the surgery, and the radiation which damages the blood vessels, and two years of hormones (which also don't help things) my chances of natural erections (even with PDE5i drugs) aren't good. I seem to be developing some scarification (possibly from the trimix, maybe from blood supply problems) and I might talk to my uro about an implant at the same time as the sling.

Going into surgery I promised myself that I wasn't going to let PCa end me as a sexual creature if I could possibly help it. Sometime in 2015 I hope my HT will finally start to wear off and it will be time to make good on that promise. There is a tiny chance that I might be able to do so with pills and a larger (but still slim) chance that injections will still work well enough. On the other hand, I'm not getting any younger and if I am going to wind up with an implant the sooner the better.