Hello everyone

How are you David. I am sorry to hear your news but all is not lost. Gleason 9 is a high grade and high risk cancer but does not necessarily determine the stage, however you could be stage 3 or 4. I take it that you have not as yet had an MRI?

You need to discuss all diagnostic outcomes with a professional before your prognosis is full known. 

Rens

Thanks, Rens,

I already had MRI before they sent me for the biopsy. The consultant said he found a strange PRADE 5 near the prostate.

im waiting for the full report.

david 

Hello David, I’m really sorry to read of your health struggles over the last 6 months or so.  I get confused by the different stages for prostate cancer - there are, I have found, at least 2 different numbering scales/ stages!  What provided a clearer definition of where my husband was at was the combination of the MRI report and the Gleason score. So, my husband was T3a No M0 . This basically means that his cancer was locally advanced ie it had spread outside of the prostate into neighbouring tissue but there was no evidence of metastases (M0) or pelvic lymph node involvement. (N0). His Gleason was 4+3= = 7. The higher the number attributed the more aggressive the cancer cells. The numbering goes up to 5 ( I think) and they provide the 2 numbers representing the two highest numbers of types of cells. Not everyone has a PET scan and I think the variability is influenced somewhat by availability of sufficient resources. My husband had a bone scan instead - no indication of problems. My understanding ( possibly flawed?) is that a pet scan is more accurate? So, at the end of the day my husband is classed has having intermediate to high risk prostate cancer.

take a look at www.prostate cancer uk. They give lots of information about the diagnostics and treatment pathways.

we were devastated by the diagnosis and absolutely riddled with anxiety.  However, people posting here provided some much needed support and I hope you will find the same.

one of the key messages I came across in my research is that prostate cancer can be classed as a long term chronic illness like diabetes. It can be cured if caught soon enough. If it can’t be cured it can be ‘managed’  - often for so many years that men go on to die of something else.  Our oncologist warned us that this is a ‘marathon not a sprint’.

once through the diagnostics ( which we found the most stressful part of this journey) there are different treatment pathways. Again, prostate cancer uk explains these in detail and very well.  A very common pathway is to introduce hormone therapy. Prostate cancer needs testosterone ( the male hormone) to grow. The hormone therapies stop this process for a while. If you read other posts here, I think you might come to the same conclusion as me - the side effects of the hormone therapy are not easy to tolerate.

I have two tips for you at this stage:

1. Talk, talk, talk to your wife! Don’t think you are protecting her by not talking to her about your fears! If she reacts to this ‘stiff upper lip’ the way I did she will feel incredibly lonely and find the whole situation worse. This is an illness for you both as a couple.

2. Don’t be shy in coming forward and politely and assertively request the NHS treats you in a reasonable time frame. Like others, we found we had to push for appointments and tell the hospital admin and  doctors in all the departments we were dealing with that we were prepared to take appointments cancelled by others at short notice. If things go wrong - make a formal complaint. The most important thing is that you get your care in a timely manner and not whether or not the hospital staff like you! Incidentally, the Government target for all trusts is that you should receive your first bit of treatment within 62 days of your GPS initial letter of referral. This is the  referral to treatment target - often called RTT. Not many people know this and it is worth citing if things get delayed.Most trusts are failing to meet their targets due to covid back logs, strikes etc but they have to publish their figures. However anxious you get, don’t get abusive or aggressive, though! 

.  I wish you all the very best and do let us know how you get on.

David 

A PIRADS 5 means there is a high likelihood you have a clinically significant cancer, which has now been confirmed by your biopsy. My only advice, and I offer it only as a fellow sufferer and not someone who professes to have any medical knowledge is to speak to a professional and take it step by step. 

No doubt some of the stalwarts of this forum will share their experiences in due course 

Rens

Sorry if emojis are all over the place instead of letters! Don’t know why! I think I might have put the same message this refers to either twice or not at all! Computer glitch or operator error?!

Hi David sorry to see you on this site, oddly the Gleason 5+4 is worse than the 4+5, so long as it has not come out of the gland and spread to lymphs and bones which is the worst diagnosis.

Getting upset and worried is quite normal, if you feel up to it read my profile by tapping the icon next to my name, I'm Gleason 5+4 incurable, but you might get some ideas for it, all the best Ulls.

Thank you so much, reading you message made me feel much better. I do pray my cancer hasn’t spread too far. I took your advice, and showed your message to my wife. She was glad I did and she said she fully identified with what you said and how you felt. We are both graceful to you.

I’ll do my best…

David

• No worries at all, thanks for your support, really appreciated!

Thanks, Ulls, that’s an amazing process you have been through! I’m so pleased you are sharing your experience. I’ll read it again and it gives me an idea I shall keep a diary. Meanwhile, I haven’t told my employer yet, I will wait till things are a bit clearer and treatments start. A couple of my colleagues have noticed and commented on my weight losing though.

Best wishes!

David

Hi David

The easiest way to look at this is to study exactly what the MRI report says, You are looking for tumour size in mm and how close it is to the capsule edge, ie is it about to or has it broken through, hopefully not.

If all is ok there ie hasn't broken through then the PET scan/CT should show if in bones, again hopefully not.

If u can get hold of Mri info then please come back on here, obviously u can come back anyway

best wishes

Steve