Dad just diagnosed with Gleason 9

Hello Again MissM2024  and a further warm welcome to our little corner of the Macmillan online Community. There are plenty of Community members here in the "Gleason 9 Club" including me.

A Gleason 9 is an aggressive cancer, however many of us here are on a "Curative Pathway" or even "Cancer Free" so all is not lost and Dad's initial PSA is not to high at 8.7 (mine was 182!).

If you have his TNM staging from the biopsy (mine is T3aN0M0) this will tell us a whole lot more.

I would think - and I am not a medical man - your dad will be offered Hormone Therapy along with a course of Radiotherapy later into his treatment, and although there are side effects we don't get them all.

Feel free to ask any questions - however trivial they may be - we are all happy to help. It's OUR Community and YOU are a most welcome member - even though you don't want to be here!!

Best wishes - Brian.

Hi Ms M and welcome 

Sorry to hear but perhaps things don't look too bad 

Looks like a T2 which means confined to the gland so although aggressive looks like it hasn't spread and hopefully the further scan will confirm that.

PSA is quite low so that's good.

Hopefully when he has the scan and u see another specialist they can start him on hormone therapy,  HT,

This will hold the cancer back until treatment starts.

Potentially still curable, as long as hasn't spread to the bones but based on the info given I don't think it has.

Radiotherapy seems probably the best option.

I wish u all the best and see what others say

Good luck

Steve 

Hi MissM2024

Good morning & welcome to our prostate cancer family & friends.

I am very sorry to hear about your father, I was diagnosed with Terminal Prostate Cancer last year with a PSA off 1000+ and the first line of my treatment was Hormone Therapy.

The Hormone Therapy consists of Injections and Tablets. My PSA is currently now 0.2 which is crazy but great.

We have got many members who have got lots of advice and experience that they will soon be sharing with you.

Please please try not to Google things as that can make things 100* worse!!! There's plenty of info and advice on our site and I will be very happy in pointing you in the right direction.

Please please let me know if there is anything else that I can help you with???

Prostate Worrier.

Hello again Millibob, thank you once again for taking the time to respond to me. My father has advised that he was not given a staging score from the biopsy, only the Gleason score. 

You have given me some hope, and I must say I read your response multiple times over the weekend to try and reassure myself that there may be a curative or cancer free pathway for him once we know more after his PET scan this Wednesday.

Thank you, and I will be back again I imagine to ask more questions once we have the staging on Wednesday as he is meeting with his urologist on the same day as the PET. 

Hi Steve, 

Thank you so much for taking the time to respond. I have read over your response a number of times over the weekend to try and give myself some hope here. I never imagined that we would be where we are today only a few short weeks ago, and yet here we are.

I thought the diagnosis of Gleason 9 immediately inferred a stage 3 cancer status, do you know if that is correct? 

We are praying it hasn't spread to the bones, but he has had a limp now for a very long time 0+ years, so hoping these are unrelated, but we are all very scared.

Anyway, thank you once again for taking the time out of your day to respond. It is very much appreciated.

Hi Prostate Warrior,

I am so sorry to hear of your terminal diagnosis, I hope that you are doing okay, I checked your profile and it was so good to see that your treatments have been successful in bringing down your PSA score, I wish you many many more days of good health ahead despite the diagnosis.

You are right, google is a mindfield. Luckily there are people like you and the others here who respond to the newly diagnosed people and offer a glimmer of hope, so thank you, it is so appreciated.

I am trying to understand if a gleason 9 means we are immediately in a stage 3 diagnosis? I have seen on staging websites that this is the case, but other website suggests the stage means the locations, size and spread. Is there any trusted information that exists that I can look at to understand this? Thank you so much. 

MissM2024

Hello

Brian is correct in what he says re TNM 

I am Gleason 9 (4+5)  with a TNM of T3b N1 M0

You will have a better idea then.

Aggressive/high range, highest PSA was 17

I am almost three and a half years In now and was first given hormone therapy  for two years and also received  Chemotherapy and then Radiotherapy.

My PSA is currently 0.01 undetectable which is good news.

Brian is correct not everyone gets the side effects.

As for Chemotherapy my Oncologist said at the last minute and we-will give you Chemotherapy as well, however it’s very rare that I speak to anyone who was given the chemo.

 I am 65 now and my daughter is so good, kind and understanding.as are my wife and Son.

 I hope that you get the answers you need soon and don’t forget we are all here for you.

You can also call MacMillan if you need to speak to someone.

 I go along to a “Maggie’s Centre” each week opposite the Christie Hospital in Manchester.

 I am so lucky that a Maggie’s is near me, you would have to see if there is one near you.

They will speak to patients and relatives without an appointment in the most caring places I know and being face to face helps so much.

 I will be thinking of you, your family and your Dad.as we all will be.

Take care and look after yourself as well 

Spud

”You don’t know how Strong you are 

until being Strong is your only choice”

Bob Marley 

Hello MissM2024  The diagnosis of Prostate Cancer is awful and once you understand the full implications and are on a treatment path the anxiety will drop to a very manageable level. I have attached a link to Prostate Cancer UK's "How Prostate Cancer is Diagnosed". You can download a copy of this or read it online but should give you all the information you need.

https://shop.prostatecanceruk.org/our-publications/all-publications/how-prostate-cancer-is-diagnosed

I do hope this helps - if you have any further questions, please don't hesitate to ask.

Best wishes - Brian

Good Morning 

No Gleeson 9 Def does not mean a T3. T3 would indicate the cancer has spread outside the gland. At this stage u do not know if spread outside.

When I say spread outside it could mean, just outside or gone to the lymph nodes or worse, the bones.

The MRI could tell u more if u can get hold of a copy of the MRI report.

This could tell if about to break our of the gland and tumour size in mm.

But the bone scan is needed just to be sure .

So I believe in your original post you said T2 which is what the MRI shows. So unless the bone scan shows something then confined to the gland

Hope that's clearer, sorry if a bit garbled, any other questions please ask

Steve 

Hello Spuduknow  It's great to hear from you again and I am so pleased all is well with you.

I didn't realise you were "one of us Northern Boys" - I had my Radiotherapy at The Christie in Oldham and am now under the Christie under their fantastic self care system called PEASS (Prostate Easy Access Support Service). What a fantastic hospital.

Best wishes - Brian.