Prognosis?? Gleason 10

Hi

Never used a forum before so forgive me if seem lost!
My father had recently been diagnosed with advanced prostate cancer. His gleason score is 10 and has widespread mestastis in his bones. He has just started hormone therapy. When we asked the doctors what his life expectancy would be they said they didn't know.
Has anybody had this diagnosis and how long we're they told they could be expected to live. My dad is 71 by the way.

Welcome to HW. Sorry you need to be here and sorry to hear of your father's diagnoses. That difficult to deal with. We're mostly a friendly helpful bunch so ask any questions.

It would be helpful to know your father's last PSA test number. Certainly he has an very advanced case. It's so hard to predict survival as it depend on how he response to the HT. Even in an advanced case there are a number of treatment possibilities.

I don't know much about those and mostly just wanted to welcome you here and invite you to ask all the questions you want. Others with more info will respond soon.

Hang in there,
Andrew

The cancer your father is afflicted with is very aggressive. After fiirstline treatment fails there are so many more. This is a partial list. Provenge, Jevtana, xtandi, zytiga, tak-700 radium 223, XL 184, .....zometa for the bone Mets some of the drugs are still in trial but showing much promise.

Thank you so much for the replies. When he was diagnosed a week ago he was really poorly with vomiting and bone pain, this is still the case but hopefully will be controlled with mess. He lost 4st in 3 months and has anemia now too...It is nice to know there are people out here to talk too!

Ed:

You know the old joke:

Doctor gave me a month.

I couldn't pay my bill, so he gave me another month.

To the poster:

Getting more serious, a G-10 is very bad news, however it is impossible to predict how well he will react to HT. It depends on the percentage of hormone sensitive cells. It also depends on the ability of the cells to eventually adjust to the HT.

Ideally, that will still be a few years. You then have bought some time and there are already many new drugs to try at that point.

Mel

While your Dad's case is aggressive for sure, there is a wide range of outcomes in terms of life expectancy. Assuming he goes on hormone therapy or surgical castration, the big question will be how low does his PSA go, and how long does it stay down before it starts to inch up again. That will be a big clue as to how well his particular cancer is responding, and will help estimate what is likely to happen next and how soon. There are many drugs out there now.

I was first dianosed, also with a Gleason 10.  The Uro. told me about it being a very aggressive cancer. In fact, I learned later it was the highest he ever treated.  He explained to me about the Gleason rating and how it came about, I think in the '70's by a Dr. Gleason, Go Figure.

He also talked about possible treatments and suggested starting with hormones then with radiation treatment as a follow up. 

By this time I was a real basket case, as you can imagine.  It hit me like a ton of bricks and I just wasn't expecting to hear the "C" word at all. I have never had a symtom before or even as yet.

I got up the courage to ask, "Well Doc, how long to I have?  He got up and walked toward me and looked behind my ears and sat back down. Of course I had ask, what was that for??? He said he didn't see an expiration date.

So for, I'm doing fine.  I'll be on hormones for another year or so and then we will see what the PSA does.

Until then, I'm still working and enjoying life.  Best of luck you your Dad along with the family.

Bert

Cb21,

There are a few of us on HW that are Gleason 9's and 10's. It's a rare club to be in and some refer to us as over achievers. Bert's doctor is right. No one has a clue. We are all so different and our bodies react and respond differently. I am sorry to hear that your Father got this hideous disease.

I have a great neighbor and MD after he found out I was diagnosed, told me to ramp my vitamins and minerals, juice leafy greens and vegetables. I feel it did make a big difference in recovery from my radical prostatectomy.

Living1963 and I are some of the few that have received Provenge treatments. I would highly recommend that your father locates a Oncologist that offers Provenge. Provenge is a treatment where a corporation called Dendreon has bio-engineered a protein that in theory seeks, finds and destroys prostate cancer cells. A patient goes in three times for a Leukaphereris (where they collect your white blood cells) and Dendreon takes the white blood cells, scrub them up, attaches the protein and then they infuse it back into the patient. The patient gives their own blood cells and receives them back with the protein.

If anything, the findings are that Provenge does extend ones life so it may be worth digging in, researching and discussing this with your Urologist Oncologist. There are other great treatments and options as well and the research and findings and developments of new drugs and treatments that keep us with hope.

I assume that if your father has started hormone therapy, he will soon begin the intensive radiation treatments, or maybe they will start to administer the radiation to your father's bone mets.

Please feel like you can come back to the HW forum and continue to ask questions. While none of us are doctors and don't offer any medical advice, we have been around the block, had many treatments, had many setbacks, and everyone is willing to share their advice.

Get your Dad on this website and turn him loose. It is an amazing brotherhood with men all around the world dealing with prostate cancer. You will also find many wonderful spouses and Dad's daughters and sons on the website as well.

We can validate emotions that one experiences upon diagnosis, the fear of waiting for the next PSA test, worrying that the cancer will become resistant to hormone deprivation, radiation and chemo will not be successful, etc. But the majority of us are fighters refusing to give up.

I just started hormone therapy and will commence my radiation therapy in five weeks. i have not idea of what is ahead of me, but i do know I can come back here and ask my friends for their advice, which I value.

Your father is very lucky to have you so worried, concern and willing to research on his behalf. Since your father was recently diagnosed, he most likely is in a fog or shock and numb to the realization of what he has. Be sure to always have someone with him at his doctor appointments so they can listen and take notes. Many of us heard the words spoken by the doctors but were in shock and couldn't really process the advice given to us.

 

I recently saw an interview on TV with one of the more prominent nationally known prostate cancer Urologists and he was discussing new treatments for PC. He said in the next couple of years over 30 new treatments will be fast tracked to approval by the FDA. Any one of these could be the magic bullet that ends this terrible disease that hits both young and older men. As you see there are a lot of guys in this forum with advanced PC and not one of them has given up hope or believe in expiration dates and are just waiting for these new magic bullets to be available for them. I love Bertb's doctors approach about the expiration date, no one has one. Most of us think cancer docs are taking away the fight from cancer patients by telling them they have X number of years or months to live. If my doctor ever told me had an expiration date he would be fired on the spot! 

While your Dad's PC is very serious he has a lot of good science behind finding the cure and the odds are not against him that he will have many good years ahead of him.

Terry

I'm guessing most of you are in the USA, I'm here in the UK. I hope these new treatments will be available here too!

Infohound
Many thanks for your reply. It seems your husband is very similar in diagnosis as my dad. It is encouraging to see the drop in psa whilst on his hormones, please keep updated with his progress. Best of luck to both of you.x

Terry: Could it be you misheard it?

I mean, to be available in 2-3 years the drug would have to be in Phase III trials NOW (or perhaps VERY late in the Phase II process). When I went to the conference last September I think a few items were mentioned, but not 30.

Sorry to be such a damper. I sure hope you are correct. That is great news, if true.

Mel

I am surprised that no-one has suggested Cb21 have a look at the stories on Yananow.
Cb21,
if you follow this link it will take you to another excellent site that has a lot of the personal stories of those who have or had prostate cancer. There are not a lot of Gleason 10s but it would be worthwhile to have a look at the 9s as well. Note particularly the story of Doug Adams from Scotland.
{specify Gleason grade in the grey box and change active vs inactive stories to "all stories"}

www.yananow.org/query_stories.php

Basically prostate cancer is very dependent on a supply of testosterone in order for the cells to survive and keep growing. Initially hormone suppression therapy should knock the tumour down and reduce it. Success with hormone suppressing drugs will vary from patient to patient and the duration of keeping it in check will also vary. After a period of time the tumour develops the ability to get around this suppression and will begin to grow again. There are then more therapies that can be used to delay and slow down the spread. Spot radiation is often used to treat painful metastases.

This site is also a very good read for what can be done when this happens.

www.hrpca.org/index.htm

Here's to your father having a great response to the hormone therapy.
Best wishes,
Bill