Overwhelmed -- Gleason 9

Welcome--you will receive many responses from all the great guys here. You will find support, experience and lots of caring.

I was equally shocked in July 2009 to find that not only did I have PCa but that it was Gleason 9 and in 6 of 6 cores sampled.

My urologist also recommended surgery but after conducting my own research and looking at the odds that the PCa would not be confined to the prostate itself I decided that better treatment would be seeds followed by IMRT, and also hormone therapy for a couple of years.

It is important to understand that if the cancer is not confined to the prostate surgery will do nothing but weaken the body and make any subsequent radiation harder on the body, and with a Gleason 9.7 and the number of core samples you need to understand that there is a fair chance that the PCa is already out of the prostate capsule. The question you need to ask is, why bother with the surgery if you are going to have to also do radiation later? That makes no sense to me at all.

I would suggest that you try to make an appointment with a medical oncologist who specializes in PCa. I think you will get a better take on the options for treatment from someone with no bias either toward radiation or surgery.

There is always hope for men with Gleason 9. At 1.5 years after diagnosis I am doing very well, though my risk for the future remains high, and will always be there because of the possibility of micromets that can not be detected at this time.

Sancarlos

Sorry to hear of this difficult news.

The bone scan is to look for signs that the cancer might already have metastasized (spread). If it has, hormone therapy rather than surgery would be the appropriate treatment. There are a lot of things that could cause "spots" on the scan other than cancer. So don't jump to any conclusions until you get the official results and have a chance to talk to the doctor. They are still **potential** and not confirmed at this point. There are many possible explanations.

Do not rush into surgery without knowing more and getting another opinion. There is a tendency for doctors to recommend the treatment that they themselves provide, even if it is not the idea approach. I encourage you to read Patrick Walsh's guide to Surviving Prostate Cancer. I second the advice given above to have your slides read at Hopkins or some other leading cancer center. Please feel free to come back here and post all your questions and concerns.

Good luck...

Welcome to HW. The scan might show something other than mets, so I would not jump to the conclusion at this point. While his PSA is high it is not out of the park high. My Gleason was 7 after biopsy and upgraded to 8 after surgery. The others have given you some good feedback and I would support second and third opionions. You are asking some good questions and the more informed you are the better you will feel about your choice. Hope that his scan is negative for mets and keep us posted as possible.

Michael

Another warm welcome to Healing Well. I'm sorry for the reason for you to join, but there are many here, as you have seen, to lend support and caring.

It is wise to get second and third opinions whenever faced with these kind of serious decisions. Your current doctor should support your other inquiries.

My two cents worth of advice is to take each individual recommendation as it comes.

For example, your current doctor has recommended surgery. Find out why he/she recommends this option in your husband's particular case among other options. Ask about the likely success of each treatment. The same would go for those who recommend other options when you make further inquiries. Take all of it in so you and hubby can make your very own decision that is right for you.

All the best,

Barry

Plenty of unknowns in the PCa and less than perfect science surrounds us completely. The possible good news is you might fair better than it seems. I had terrible stats and total urinary blockage caused from PCa in early 2002. Hit it hard with protocols early on and so far coming up on year 9 now and so far (knock on wood) has exceeded my expectations for living and still doing well (thus far). See my stats below, note the 12/12 cores all 75-95% and psa, and Gleason scores....I probably shouldn't be here.

Another example of fairly good response with serious PCa is TruemanSeaman, psa 4212 and lousy prognosis...lived 10 yrs. using some righteous doctors and protocols. His story is posted at www.yananow.net

www.yananow.net/Mentors/TruemanS.htm       (other mentors stories there too)

Dr. Fred Lee's story is incredible, diagnosed 27 yrs., ago, failed cure 2 yrs. later, still living at age 80, been living 25 yrs. with non-cureable PCa. (weblink available too)

In my case I had PSA and DR every year.  Then got slammed with a PSA of 15 on finasteride (which means you have to double it), Gleason 9. Had robotic prostatectomy this past September and went to .06 PSA three weeks later, .03 six weeks, and 0.00 at 12 weeks. 

The important thing, as many have said on this thread, is to do your homework. You and your husband must work as your own advocates. Talk to people and monitor or post on this forum.  I have found that when you post a subject you will get a miraid of answers. There is a great deal of experience on this forum and that is what you need to help you and your husband make an informed decision.  The only question that is silly is the one you did not ask.  

 

What helped me, and I am sure many will not agree, was the fact that once you have radiation, hormone therapy, etc. it is difficult to have a succesful prostatectomy.  As I mentioned my Gleason was 9 PSA up around 30.  In all probability it had got into the system.  If I was able to push a rewind button I would probably have done what John T suggested in the way of additional tests.

 

Wellcome to the group. I know that you will find information here that will help in dealing with the road ahead.
ron

Last September I too was a Gleason 9 and after careful research determined that getting that beast out of my body asap was critical. A recent convert of integrated medicine, we immediately took out of our diet all sugar, dairy products, red meat and switched to a completely organic diet of fresh fruits and vegetables with delicious meals of wild caught cold water fish, chicken and eggs. We also loaded up on cooked tomatoes for licapene and a variety of other antioxidants like green tea and blue berries. What actually worked? We don't know but we do know that we ate like my life depended on it. And so it did.

Added to that was a rock solid belief that when disaster strikes us, we are given the tools to prevail...the choice is ours--to stand and fight or lay down and die. Which will you choose?

Next was finding the best surgeon in our area because a DaVinci robot meant nothing to us in the hands of someone without at least a few thousand surgeries under his belt. We chose Dr. Mark Kawachi at City of Hope near Los Angeles. During the five weeks between diagnosis and surgery, via meditation and super positive attitudes, we convinced our bodies, souls and minds that the beast was in fact, in remission.

The morning of surgery, as I shook hands with Kawachi while nurses were busy plugging needles and tubes into my nether regions, I looked him in the eye and said that as far as we were concerned my cancer was in remission and that I was only going along with this to humor him. The staff was further surprised when I added that my post surgical biopsy would reveal a lowered Gleason score.

Eight days later when they removed my catheter, not only was I water tight but three nights later we had sex with a 3/4 erection compliments of vitamin V. Best of all...post biopsy Gleason went down, not to an 8 but a 7! All margins and lymph nodes were clear and completely organ confined. First lab test was with Bostwick and the second was City of Hope so an error was nearly impossible.

Your bone scan showing suspicious blobs? Forget about them until something is conclusive and then, even if there is a problem, your fight is far from over. It is just beginning. But I say to you my brother in our battle with this hideous monster, THINK POSITIVE AND DON'T YOU EVER DARE GIVE UP!

Hey there I have a post op gleason of 9. Have gone through depression, thought all of this sucks and found that I have lymph vascular involvement and seminal vesicle involvement. All from a healthy strong guy with 0 symptoms. Hell I hadn't even had a cavity in 25 years!!! Now I am incontinent, have complete ed as it has not moved since the morning of surgery. Now I have radiation and perhaps(Hormone therapy havnt decided on this part). Look, many go through a time when it is scary and the quality of life post treatment comes into question. You must gather your inner strength and decide how you want to proceed. You may need help. This site is helpful, family is very helpful and friends also can be a support. This is a desease and even though I currently have 0 bladder control and can't get it up, I'm telling you that I will be alive years from now and am still every once of a man than before this mess was laid on my lap. Be worried, be scared, wonder if you can still be a man. Then move forward with all the confidence you had pre diagnosis, and kick it's ass!!! Volv

You are among the best of friends. Sorry you have to be here, but know these are some of the finest and most knowledgeable guys and gals on earth. I would recommened reading "Surviving Prostate Cancer" by Dr. Patrick Walsh. This book really does put many things into perspective. Please keep us informed on your journey, and we wish for you and your family the brightest of tomorrows. Happy New Year.
TTaylor