Gleason Score

Hello Rooky 

Welcome to the Gleason 9 Club !! It's an aggressive cancer but very much treatable - however to give you the best advice (I know your OH has a PSA of 12) do you have the TNM staging from the biopsy?

If the cancer has gone "Walkabout" and left the gland then yes Surgery is a no - so the TNM will give the details of where it is along with the CT and Bone Scan.

I would be polite and assertive and if you speak to your team see if you can get an early date for the CT and Bone Scan and if possible let booking and scheduling know you are available to take any short notice cancellation.

I am in a similar position now - I am a Gleason 9 - My PSA is increasing and I had a CT scan yesterday.

Best wishes - Brian.

Thank you for your reply Brian .  At this minute I don’t have the TNM from the staging but they says a letter would be in the post not sure if it will be the results or the appointment for ct and bone scan.  It’s like everything else you remember what you should have asked afterwards.  They did say we can call any time so perhaps my OH could do this tomorrow.  

At the minute we are just floored at the results and at the thought of telling people who are waiting on updates …. Actually feel like my head might burst 

Hello Rooky 

A cancer diagnosis isn't the best news in the world - but treatments are there and once you get a full diagnosis you quickly adjust to the new normal. The TNM stage is important so we know just where you are.

Don't panic or blame yourselves - i know it's easy to sit there saying "Why Me/Us" but just say to family we have a few more tests to do and once we have the results of these we will have a diagnosis and a treatment plan.  We will let you know when we know.

My journey has been full of ups and downs - I am on bit of a down now waiting on CT results but I know there are "More tools in the tool box" so I am not worried. (You can read my story by clicking on my avatar).

If you or your OH need a bit of extra support please do call our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) they are a great set of people.

Stick with us - vent here if you need to (it's better here than at home or with family) or if you have questions - ask away - nothing is silly or too trivial.

We are all here for you and have ALL been where you are now and WE are Stronger together.

Best wishes - Brian.

Welcome to this club. No one wants to join it, but comfort can be found.

I was diagnosed with a Gleason 9 cancer a year ago this month.

For your reference, my staging was T3b N1 M0. This meant that the cancer had escaped into a very nearby lymph node (thankfully only one, and that only a probable) but was not running around loose in the rest of the body.

Surgery was not an option locally. My oncologist stated that my cancer was locally advanced, and would be treated with curative intent. She stated that I would have 6 months hormone therapy to shrink everything (it did that, by golly), 37 days of radical radiotherapy which seems to me to mean "nuke everything in the pelvic area" and carrying on with hormone therapy out to the 3-year mark.

I have had 6 months and more of hormone therapy, and the radiotherapy. My oncologist says that I am on target.

So, I have a plan (and, comfortingly, the one recommended by the National Institute of Clinical Excellence) and am on the pathway.

My memory is full of the time when I was waiting for tests and nothing seemed to be coming together. My mind was full of fluff, and more than a little dread. Even though we say that time flies at our age (I'm 72) I swear that I could feel every single second walking by.

I believe and hope that your head might settle down once you have the full diagnosis and a plan to deal with it. Then you will have something to get on with.

Remember that even a Gleason 9 grow slowly by comparison with other cancers, and small delays will not be a problem to you.

There is treatment whatever the outcome, and new treatments, or patterns of treatments are coming out all the time.

Grit your teeth and look forward. We are all here with you.

• Apologies Brian I only just found this message.  Again such a kind and encouraging message for us.  You have no idea how much this forum is helping us deal with things at times. 
  I hope your next part of the journey solves itself with treatment soon 

Mstev2 

Thank you so much for such a lovely reply.  My OH and I really appreciate you taking the time to respond so kindly and for sharing part of your journey.

Can you believe my OH has missed a call

At 5pm today and when we look the who called me number it’s from hospital appointments office.  Praying when he calls tomorrow it’s for a cancellation appointment for scans 

hello Rooky

 yup

I was there,

lower gleeson of 8  T4, 3 figure PSA and along the seminal vesicle, in the lymph system  and partying

elsewhere, not in me bones though

so here's the kicker ,

you head is spinning, where now....

 I have an advanced  diagnosis and now into the seventh year (a little light in a dark time, i hope)

As I keep saying  we are all different. There are many options and an army on your side. worldwide effort to help us.

Try to stay on the positive side, it  will help to climb the hill on the unwanted adventure, occasionally the hill will be steep as it is at the moment, some days it won't be as steep but keep plodding with the head held high and see where it leads.

I'm a lot further up the  hill than I was ever given, keep plodding and hopefully you will get  up here to,

 the view is good, I would like you  and many others to see it

Best of luck

TG

Initially diagnosed gleason nine 4+5 bone scan clear ,Then given by urology department a prognosis of stage 3 with a bit of drama in pelvic  area and a bone met in right hip area although this didn't show on bone scan ,but was picked up on pet scan .oncologist upgraded diagnosis to stage 4 which was bit of a shock 

Diagnosis took from February 24 to June 24 .

I hadn't googled anything Initially about PC .

IF I had I would have challenged urologist about diagnosis 

Doing well at mo except for sweating intermittent fatigue and loss of libido. 

But hey ho life is good ,and I was told if you had to go into a shop and buy a cancer PC is the one to have .?

Time will tell and good luck on your journey .

Mal cg aged 68 making a comeback 

Hi Rooky

As Brian has said staging TNM  is most important here because although highish Gleeson it doesn't mean that it's spread elsewhere, can't see any PSA figures anywhere which could give another clue.

Having said that perhaps.you'd rather wait for the official figures in order to stop the speculation.

Anyway, in theory Gleeson 4+5 still potentially curable 

Best wishes 

Steve