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

This is my first post, I have been reading for a few days, was diagnosed in January, psa at 30, biopsy came in at 12 of 12. Gleason 9 in four, 4-5s, some 8s and one7, one6. 100% in most and a couple of 95% and one 10%. Started HT and have had my first visit wed. with rad. oncologist to schedule nuclear option that is no longer an option, am expecting a spectacular blast zone. I'm 58, live in Texas, married, with children and grandchildren. When this came as a result of a yearly checkup, I was like most, very new to this world. It doesn't scare me yet, maybe that will come later, I've just decided to roll with it and take it on the best I can. I know there will be bad days and good ones. I'll get a better signature together soon. Mine as you know is aggressive, rated thankfully though at t2c. I hope to converse with many of you, good luck and give her hell.

Bill, thanks for the welcome. I'm in the waiting game now. You know the wait and dread of all the upcoming procedures and clinical visits bother me more than the actual cancer does at this point, as strange at that may sound. I've spent most of my life relatively healthy and now I'm in for a steady strem of dr. visits. I've read enough to know its survivable, but boy it sure does change things, understatement, I hope we all can see the light that awaits us no matter what the outcome, God bless you too.

Welcome Paluxy Kid!
I too am a newbie here. I'm 3 days post-op and sitting at home "adjusting". I agree 100% with your attitude as it's the same as mine. We have it, so let's move forward and do something constructive. I'm curious as to if surgery was discussed with you as an initial option, only because of your numbers are similar to mine, certainly not suggesting anything. Keep up the attitude!
Cheers, Doug

Ok will do Lon. They say that there is around a 30% percent chance of the Gleason score being upgraded during the pathology. Ok, so we might go from 9-10, does that really matter, personally I really don't think so? In your case there will be no pathology. I bought the book "The Decision" by Dr. John McHugh. I read it after I made my decision and realised I had made the correct one for me. Strongly recommend you get a copy. If you click on my user name you will see my email address send me an email. Like I said earlier we have similar numbers and the same attitude, would like to discuss my decision with you further. It may help you with yours.
Cheers, Doug

Debbie MH and all g9's,
I am not a g9 but am interested in the "outside the box" procedures that some doctors and facilities are using. I reviewed hubby's stats and saw that he had some "bone mets" and yet had 2 months of radiation. I believe in "debulking" the problem so congrats and long life. Maybe a new day is dawning!
Bill

PSA3DOT7 said...
It takes time ... Ive been here for awhile and a G9(5+4). I think my "handel" will be posted in due course!

Hi there, PSA3DOT7. You were just entered on our illustrious roster, and sorry to have to do that! I catch most of the new G9 folks but occasionally miss someone coming on board.

You're our newest 5+4 member; I'm afraid it's the least attractive section of the least attractive chapter of the least attractive club there is. I hope your recovery continues to go well!

You're fortunate in that it looks like your tumor burden was pretty small despite its aggressive character. Kind of a little "Napoleon" of a tumor! Glad you got it early, and let's hope it met its Waterloo.

Hang in there, bro!

As I enter my forth month of diagnosis of multiple g9s, with radiation looming, sometimes I feel what the hell. I'm leaning to just go with it and forgo any treatment and see what happens. I am fully aware of the eventual outcome. Give up? Give in? I don't know, fight it and be encumbered with all the side effects ? They told me there three years of ht. I'm at the critical point of indecision.

Lon,

Your urologist told you there was a good chance that you have distant micro-mets and he is right. But, even with your high involvement and Gleason score, there is a fair chance that you don't. You have a chance of a long-lasting remission with radiation and HT, and even some possibility of a cure, although doctors are really cagy with using the word "cure" with us Gleason 9 guys. I think it's worth going for.

I've done radiation and two years of hormones. I didn't find the radiation that bad, actually. I've had a few side effects but they have been minor. I can't say I am fond of the hormones. Since you are new here you haven't heard me complaining about them. But they are doable. And although three years is a hell of a long time, it will end after the 36th month and you will have a shot at being done with it.

Radiation plus temporary hormones is a very effective treatment. You might also talk to a doctor who does high-dose-rate brachytherapy. The combination of HDR Brachy plus external beam radiation plus a couple of years of HT has as good a cure rate an anything.

If you look around this thread, and this forum, you will find a lot of high-risk guys who are doing well after treatment. And, admittedly, a few who are struggling. There are no guarantees. But you have a fighting chance, if you decide to fight.

Shucks, Ive done 3 rounds of radiation on my hips within 11 months. Radiation treatment is very manageable, your gonna lose a little weight, maybe have a short period of little appetite, but it passes. Fatigue is pretty significant, but you get through that as well.

I think all of us G9s ponder giving up somewhere during our battle. I suppose if and when quality of life is severely compromised one might do some study on that part. I admit that 2 months before my latest radiation gave me new insight on how rotten I could feel daily, but that too passed.

Redwing57 said...

PSA3DOT7 said...
It takes time ... Ive been here for awhile and a G9(5+4). I think my "handel" will be posted in due course!

Hi there, PSA3DOT7. You were just entered on our illustrious roster, and sorry to have to do that! I catch most of the new G9 folks but occasionally miss someone coming on board.

You're our newest 5+4 member; I'm afraid it's the least attractive section of the least attractive chapter of the least attractive club there is. I hope your recovery continues to go well!

You're fortunate in that it looks like your tumor burden was pretty small despite its aggressive character. Kind of a little "Napoleon" of a tumor! Glad you got it early, and let's hope it met its Waterloo.

Hang in there, bro!

Hey Redwing, am I on the roster? BTW, hate to have to say it, but I am also 5+4 in one core ( the other 4 are 7s and 8s)
Bill

Hello. My husband is a Gleason 9. We're "new" in the PC club! It's all a bit scary. Got the results of the biopsy in February and started on HT straight away. He's having gold seeds put in and measuring up done a couple of weeks after that in June. That's when we find out the date of the commencement of 8 weeks of radiation. Not looking forward to that as we have to travel and stay in the City during the week and go home on the weekends. I envy those who can just go and get it done and then go home instead of having to stay in accommodation. We are wondering what we can do to fill in time during the times when we aren't at the hospital cos we are going to go a little crazy lol! I've done a lot of reading about Gleason 9 and the implications wise. I haven't told my husband how serious it really is. I want him to have hope for as long as possible.

L.D. said...
Thanks Men, I sometime get this attitude of the hell with it, even though I'm new to this crap and don't fully understand the consequences, although I have a good idea. I do have a question, what happens if I forgo rt. for a few months as I have a job coming out of state, then do it in the fall? I'm already on ht. I can refuse the job and stay and do the rt. but my work is seasonal and very rewarding financially. Can I put it off safely?

Hi Lon. I just read through the most recent quarterly update I get from Johns Hopkins publications on Prostate Disorders. it does address your question for some guys on page 29:

"With favorable risk PCa, it won't make and difference in cancer curability whether you act right away, or begin therapy 3-6 months later. In the meantime, give yourself all the time you need to fully understand your options - all of them"

and then on page 30

"Whenever a man asks me what is the likelihood of missing a chance for cure if they follow the Active surveillance protocol, I tell them that since Johns Hopkins has the most rigid standards for men to be accepted into the program, the chance of their develeoping a cancer that will not be able to be cured is as close to zero as possible"

Admittedly as G9's we are not favorbale risk nor candidates for AS, but it seems the concept of Lupron temporarily preventing any future growth duing your high income season may be analygous.

On page 37, it does address our situation a tad:

"When men are first diagnosed with metastatic PCa, the standard strategy to improve survival would be to start with androgen deprivation therapy (ADT). This would decrease the circulating levels of Testosterone, the male androgen, by blocking its production with drugs. In the absence of Testosterone, PSA Levels would quickly drop and remain low for months, sometimes years"

and on page 45:

Antiandrogens: Casodex (bicalutimide) bind to the same cellular receptors that androgen homrones (including testosterone) use to stimulate prostate cells, Thus, they prevent androgen homrones from affecting the prostate"

As PeterDA says though, check with your radiation onco to be sure.

LuponJim

Thanks for posting, Explorer08! I added you to our illustrious roster at the top of this thread. Frankly, I'm pretty sorry to see every name on that list, but we are here for mutual support. That pathology report must have been a rather shocking surprise, but it sounds like you've been doing pretty well.

My G9 didn't make a lot of PSA, unfortunately. For the severity and amount of involvement I had, my PSA was barely at a level to raise an eyebrow. Using equations from some studies, I estimate my PSA was only about 1/4 what it should have been. I've wondered about future trends too, wondering if low PSA in the future could fake me out.