My dads just been diagnosed with pc Gleason 9

Hello terrified daughter,
Sorry for your situation, no it's not the wrong place, it is a very good place to get informed and learn from very kind and knowledgable people.There are plenty of G9 guys on here who will chime in soon I'm sure.
As for your dads Gleason score it is at the high end but not beyond many treatments, good on you for researching and finding this place, your dad will need your love and support throughout his treatment what ever he chooses. Important thing is to not jump the gun and think the worst, wait until all information is available then look at options, do your research and ask questions. Most important thing I recommend is if you haven't already find a good Urologist who has lots of experience with Prostate cancer, you might end up seeing an Oncologist as well. There are some very good books out there (Patrick Walsh) while your waiting you may as well learn about PC.
Welcome Ausboy

Terrified daughter

I am very glad you found our little corner of the world here. Great place it is with brothers and sisters (wives, daughters, daughter in law) all who are fighting this prostate cancer.

My suggestions;

1. Do NOT goggle anything until you have some idea what is what. Come here and ask questions first. There is so much stuff out on the internet that is either wrong or out of date.

2. Sure get the books. But remember they are probably out of date and other books will contradict them

3. Be calm - Right yeah I know. Scary stuff. There is a lot of information your Dad needs to get first before he decides on any treatment plan. Other than gathering the information (scans, x-rays, oncologist, urologist) there is nothing he has to do right away. Once he has all the information than he can start deciding on treatment plan.

4. The medical community has a full arsenal of drugs and other treatments - with more coming down the pipe line.

5. When your Dad does go to the Doc's.
He will want someone with him - preferably someone who can remain calm. Someone suggested audio taping the doctors conversation, that can be very helpful if the Doc agrees.
Have your Dad write out all his questions before he goes to the Doctors appt - than hand a copy of the written questions to the Doc and go over them one by one.

6. What should and should not be said. See if you can get him to come here himself. Be positive - there are treatments available. Do not use the "If you have to get some cancer, prostate cancer is the one to get because blah blah blah" - Yup I've heard that one. Your Dad is probably scared - let him decide what he wants to share with everyone - somehow let him know you are open to him sharing.

7. Your Mom will also need help - would be good is she came here. Our sisters are amazing people.

8. You will need support - We are all here for you.

9. Prostate Cancer: The Really Useful List made by HW people for HW people.
www.healingwell.com/community/default.aspx?f=35&m=1717641

Hugs!
Bud

(Made link clickable - 142)

Post Edited By Moderator (142) : 1/15/2012 1:33:53 PM (GMT-7)

Hello terrified,
I'm a Gleason 8 which is not a walk in the park. I've been without my prostate for 3 years and I'm doing fine so far. Gleason 9 is not good but it is not the end of the road. There are several treatments that can keep your father around for a long time. Make sure he consults with a PC oncologist, radiologist as well as his Urologist to zero in on the best treatment.

Terrified Daughter,

Welcome. I am G9. You can see my statistics in my signature. Gleason 9 requires a more aggressive approach but is certainly manageable. So far, I am doing well. Assuming the scans come back clear, external radiation & hormone therapy are likely treatment recommendations.

G9 also... Not really been here long enough to give advice but willing to listen. I had a hard time finding positive things but once here got some great support. Even just reading from the sidelines... So even if your dad doesn't want to post there is lots of reading. I'm probably closer to your age and take my word... G9 is not the end. It may be the beginning of a new journey that wasn't planned... Stay positive! It really does work.
All the best in your research.

jazzman1,

Yes, this is a cool place. I love Raddad's list. Terrifieddaughter, I know the terror you are feeling and I imagine right off that is normal. Just give it some time to settle in. Then, educate yourself, but be careful what you read on-line. Your emotions have to run through a cycle with this, so just know your terror will go away. My husband is newly diagnosed so I understand what you are going through. Take care.

walkbyfaith

What an amazing place this is if u guys were here I would give u all a big cuddle!!
Thank you so much for all your replies and all the information I feel More positive am so glad I've found you all and your all doing so well!. I just have to keep my fingers crossed it's not spread anywhere else. I will keep you all updated and if I have any questions I hope you will help me. I will show my mum all this too.

Much love to you all and thank u
X

Dear Terrified,

I know what you are going through. The first week is very difficult. My dad was diagnosed with Gleason 9 in early August. It felt like my world had caved in and all the security and protection my dad has given me for 35 years was being threatened. I was fortunately able to use this forum as a way to protect him. You can help him a lot and you are most definately in the right place. The people in this forum are kind and smart and courageous and they will help you.

My dad was not a candidate for surgery. We accepted this and did not have to make the decision on radiation. We just went for it so our situation was different. For us the treatment plan was certain radiation and 1- 2 years of hormone. As time goes by the information will be presented to you and you will have to sort it out. I think waiting for the initial bone scan and catscan is probably the hardest but once you know where you are at and what you are dealing with it becomes clearer.

These are the things you must do:

Make sure you get a copy of the biopsy report and make sure Dad understands it. It will help in making a decision, The number of positive cores, where in the prostrate etc etc.
Also get a second opinion of the biopsy slides. Its very common to get different results.
Surgeons like to cut, so make sure that you have a urologist that you trust that can guide dad before talking to a surgeon,
Research all the different kinds of treatments surgery, radiation etc.
Be informed, educated, have your dad write down his questions before he goes so he can make an informed decision.

You will get through this. Its really scary at first but the more you know the better your dad will be able to fight this thing. IF you want more specific advice, I know there are many men here more able and better able to give it to you. take care - D

Terrifieddaughter, just a note of hope: I have a friend who had a biopsy of 4+5. After surgery, the pathology turned up a 4+3 instead, with some tertiary 5 (basically, although the exception to the rule, the Gleason score was significantly downgraded). It is possible, as my friend has found. And, as you have heard in the posts above, it is definitely treatable at Gleason 9.
My prayers are with you for peace and strength for you and your Dad.
Jeff

Unless you are told otherwise, I would expect that it means they want to look more closely at some spots.

I had several spots that were reviewed, but because the doctor was actually on site at the hospital, they questioned me about those apparent hot spots before I went home from the original scan. In my case they were due to bone breaks when I was younger.

All of mine were lit up like a Christmas tree, none were metastasis. I hope that will be the case for your Dad.

Thanks for replying so quickly
142 - I do hope so. He has broken his right shoulder a few years ago. But he's never done anything to his back :( x

Raddad- Thanks for explaining that to me. I didn't know you had it on your bones too. R u feeling well and do you live life like you did before you found out? Xx

My upper spine was also "bright", but I had an MRI a few years back that showed a lot of degeneration that will someday cause real issues. I had that report with me to hand to the docs at check in, and they were not concerned with it. I've never broken those bones, just treated them badly.

That is part of the reason that bone scans get bad reviews as diagnostic tools. Finding something is one thing. Understanding what has been found is yet another.