Gleason scale 9

Hello All,

I brought my father into the ER on super bowl Sunday.  Dad had told me by phone the weekend before that he had the flu, and wasn't sleeping at night.  A week later he was too sick to attend a super bowl party, so I drove to his house.  I took him to the hospital, very much against his will.  His weight was high, his blood pressure was super high, and he was in complete renal failure.

Initially the doctors felt that he must be an alcoholic.  They kept inquiring about his alcohol consumption.  Dad is a few months shy of 80, and has lived alone at my childhood home for over 30 years.  Dad is a retired NYC union carpenter.  He prefers to live in his house, alone, on his 5 acres, with all of his antiques, and toys - without all of this - there'd be no sense living in his opinion.

Dad hadn't been to a doctor in 50 years so we had no base lines other than him arguing with the Drs by saying I've never had high blood pressure, and I've never weighed more than 200 etc.  Impressive having never seen a physician but very detrimental not knowing basic information.  Being stubborn doesn't cure it all.

So - end diagnosis was "huge" prostate gland blocking urethra and after catheter installation, 25 pounds of fluid came out in 12 hours.  Kidneys had complete function, blood pressure dropped along with his weight in one day.

After being put on Flomax and rapiflo the catheter was removed but Dad couldn't pass the flo test.  Dad then had prostate surgery and created a big tunnel to eliminate any blockage.

Then the pathology report came back - gleason scale 9 

Dad is scheduled for a complete bone scan and internal organ MRI tomorrow with a "team" meeting on Tuesday to discuss results and treatment.

I don't even know where to begin so I'm on here reading away for info.

Terrified daughter in need of assistance

Sorry you need to be here, but really glad you found us. This is a great group of people, and should be able to provide you a lot of support. As a fellow Gleason 9 case, I can understand some of the emotional turmoil he and you are facing. Have courage; there are many things that can be done.

Your father is fortunate to have you in his corner. We guys can be unreasonably stubborn about doctors and our health, and quite often it is the loving women in our lives that get us to take care of ourselves! He's been through a lot already, but it sounds like you have him on the right track to get the help he need.

As you've no doubt found on the web already, and may have heard from the doctors, a Gleason 9 indicates pretty aggressive cancer and definitely needs attention. The tests that are scheduled will help the doctors figure out his "stage" or how contained the cancer is. That will help you and your team of doctors form a treatment plan.

There is a thread at the top of the forum for the newly diagnosed "Newly diagnosed with PC? – read this thread first": www.healingwell.com/community/default.aspx?f=35&m=2652250

We also have a thread that's a gathering place for those facing a Gleason 9 diagnosis. There are many stories there. You may find encouragement, since a lot of the guys have been around for quite a while! It's here: www.healingwell.com/community/default.aspx?f=35&m=2863652

Stay with us, keep posting on the thread you've started here. If you can provide any more information about his diagnosis, it will help us help you.

Wow, so glad you forced him to the hospital and to the doctors. Without that intervention, he may not be here now.

I wish you the best, he's in a complicated situation for sure.

David

The best place to go is probably Memorial Sloan Kettering Cancer Center in NYC.

I don't know much about the area but a lot of guys here speak well of the Memorial Sloan Kettering in New York. Google maps suggests that isn't that far from Ridgewood, at least as the crow flies.

 

Hello friends,

We had our conference yesterday regarding the MRI and Full body bone scan.  After being brought into a room at the Valley Blumenthal Cancer Center the kind lady named Sobeida said well you all look so nervous so I will let you know that the test came back and they are good.  The first doctor will be with you in a moment.  After she left I said to my father and two brothers, "well Daddy, you never were one to play the lottery, but you just hit one" ... we hadn't even time to digest it when Sobeida came back into the room to say - "I'm so sorry, I must retract that, the bone scan results were not good", opened the door and then left again to bring first doctor in.

Holy smokes!  I still can't fathom how no one jumped up and strangled her right then and there - I'm still in shock.

So - the CT abdomen and pelvis with contrast showed nothing alarming other than marked circumferential bladder wall thickening which was expected.

The total body bone scan shows extensive foci of increased uptake throughout the axial skeletong with corresponding sclerotic lesions seen within lower ribs, visualized thoracolumbar spine and pelvis one CT.  Lesions are seen in the bilateral shoulders, scapulae, ribs, thoracolumbar and sacral spinem iliac bones, ischium, sternum and ischium.

Extensive osseous metastasis.

Four doctors came in the room one by one and all had the same story just worded differently.  At the end everyone stood in the room including that gem of a lady Sobeida.  I will write a letter and inform the center that Sobeida should have two functions ... walk patient and family to the room and two ... walk patient and family to the exit.

The recommendation is hormone therapy only.  One dose of firmagon and a PSA level test.  Although this test will be not be an accurate baseline due to TURP on 4/10/14 they have to start somewhere.  Then Lupron and PSA monitoring for effectiveness.

Daddy says he has no pain.  But he also had no pain when he had 25 pounds of piss in him and complete renal failure.  Obviously, he has a different scale for pain.

Do you all think he will make it to his 80th birthday on June 9th?  and do you have any recommendations/opinions for different treatment.

Thanks a whole bunch and God Bless each and everyone of you fighters.

Terrified daughter,

MomEof3

Pathology - 9.6 GM, adenocarcinoma - acinar type

gleason pattern 9 (4+5)

tissue involved by tumor - 50%

perineural invasion:  present.

 

 

I guess I am bracing for the worst and I'm praying for anything a tiny bit better.  I will remain nothing but completely positive in Daddy's presence but I am crying throughout the day and night while away from him. 

Thanks for the attitude punch ... I needed it

Mom,
if you have time google Mike Hawker and C-11. You can find articles about a guy who thought he was in his final days. After switching from chemo to hormone therapy he saw rapid improvement and is currently in remission.

Best of luck!!!
And I'm sorry but 25 lbs of piss? I didn't see any comments about a pissing contest above but surely your dad takes first prize! There is so much that we have to laugh and cry about while on this journey.
As Peter said above, why not hope for his 90th bday in 2024.
;-)

 Thanks again for all the comments.  Yes, 25 pounds of piss, we will be poking my Dad about this until his last day.  We share a dry sense of humor and I will no longer use the term full of crap with him - it will forever be full of piss ;)

Dad had his two shots of firmagon on Thursday.  On Friday morning he was out working in the yard bright an early.  He says he feels good but the two injection sites are painful, swollen, and red.  How long will this last?  Does this reaction occur with every injection or just the first?

I did read about the 11c Choline research at the Mayo clinic.  Very good read.  I am more interested in 

http://weill.cornell.edu/news/news/2013/10/weill-cornells-experimental-prostate-cancer-drug-shows-promise-in-clinical-trials.html

Dad has a great attitude and he impresses me each and every day.  He is just continuing his life and is only a little cautious right now because of the medication.  He is scheduled to get his catheter out on Thursday and he is planning on running from the office to his car - go get 'em Daddy :)

Has anyone else not experienced pain from the bone lesions?

Make it a great day!

daughter coping a little bit better every day

 

You, my friend, are hysterical!

Dad is tall and I am 8 inches shorter - but he is not testing on me bcs his bumps may be bigger than mine right now ;)

It's good to laugh

I'll let him know that the itch is just around the corner - and he used wasp bite as his analagy - remarkable.

I had a few shots of Lupron and several of Eligard. The Lupron is very liquid and given in the high part of the butt. The shot itself wasn't bad, but the site remained sore for a few days, but not debilitating. Some men will get pain that radiates down their leg, but I did not. Two days ago I had a tetnus shot and it was worse than my Lupron shots. Given what he has already endured he will not notice it.

I would quickly ask about Casodex first. It mitigates the Testosterone flare that Lupron brings about. This can be especially troublesome when one has mets in the spine as they can cause compression from quick growth before the Lupron starts to work after a couple of weeks.

Peter I appreciate your geeky thoughts there. I had those exact same questions when discussing the same topic with Grandpaof4. He's having quite uncomfortable reactions every month with Firmagon. I'd suggested looking into switching over to Lupron since I find it to be quite painless.

That sure sounds like T Flare. If that's what it is it shouldn't last long but you should talk to his doctor about an anti-androgen (like Casodex) which might help. Usually men are put on anti-androgens before they start the Lupron because Lupron makes testosterone go up for a week or two before it goes down and stays there and the anti-androgen will block the effects of the extra testosterone on bone metastases, etc..

He should talk to his doctor about what sort of pain meds he can take but I'll bet most of the over-the-counter pain relievers are all fine. If those don't work he should get his doctor to give him something stronger.

He should definitely plan on that golf tournament. We've had a lot of guys on the forum who waffled about whether they would feel up to doing this or that and I can't remember many who regretted making the attempt. There was one guy who did the balloon ride thing and landed kind of sideways. A bit more adventurous than he had planned. But a good use of time taken back from his cancer.

Your dad should talk to his doctor, find the right drugs to deal with his pain, and go out and proudly play a lousy game of golf, if that's how it works out.