New diagnosis

Hello JEP - snap! I think I could have written exactly the same a year ago except that I am a retired registered nurse! My husband  was diagnosed T3a N0M0 Gleason 4+3. He had been having regular PSAs due to a strong family history of prostate cancer and also early onset breast cancer. His PSA had been slowly increasing for years. About 4 years beforehand he was referred again to urology (2nd time). The consultant we saw was just so very rude and implied we were wasting his time. Told us to go away and not go back until PSA was 10. GPs took this to heart and it was only thanks to a new GP that my husband was rereferred to urology and we were launched onto the diagnostic pathway.

so, I was extremely angry and frightened in equal measures. I scared myself silly by researching! But, that research was crucially important for gaining some sense of control, having the ability to ask the right questions and for my husband being able to make his own informed choices. I used to translate research papers into more easily understandable facts and figures for him as he has never worked in any health related organisation.

As far as keeping positive - I failed completely! I started crying and carried on doing so for 6 months! I began to think those darned tears would never stop! We have a tortoise. If it is frightened it pulls all limbs and head into its shell. That was how my husband reacted! He refused to talk about his own thoughts and feelings and I felt so incredibly lonely.

Roll forward a year and he has now had his radiotherapy and continues on hormone therapy. I now realise that for those first 6 months it was like we were going through some sort of grieving process. All our old certainties had been taken away! Now we are settled into a different ‘way of being’ and trundle along - enjoying life and just ‘getting on with things’ as before.

there are several people here who belong to the Gleason 9 club. I am sure they will respond and encourage you with their very positive stories. There are also a lot of us wives here and I feel sure they will join in and give you fantastic support. You are not alone in this journey and , here, we all try to help each other!

good luck to you and your husband - do let us know how it goes! X

Hello JEP - well I could rant on about the GP missing something that should have hit him straight between the eyes but looking back won’t achieve anything other than anger.  My husband had his prostrate removed on Wednesday, I’m picking him up in about 3hours.  His PSA was 4.1 with a Gleason score on 3+4, his PSA had risen by 3 over a period of 4 months.  The surgeon removed some lymph nodes too.

my husband is very old school and I’ve literally had to teach him everything about his diagnosis, he’s been using the squeezy app for the last 7 weeks because I told him about the complications afterwards.  He could relate to the instructions (nuts to guts and testicles to spectacles).  He needs a catheter in for two weeks and I had a go yesterday at emptying the bag but of course pee went everywhere ‍♀️ I’ll improve with practice.  

so, to answer your question just keep busy, involve your friends if he wants to.  We were surprised at how many people we know have had the same but decided not to speak up.  It really helped him with support.  This platform has been fantastic for me, so many positive stories and helpful hints and advice.

Not sure if this helps you but it helped me.

take care 

Kerrie 

Thank you for your reply I’m reading all the stories on here and realizing positivity is the way forward thank you 

Thank you so much for you honest thoughts and sharing it made me cry knowing others feel the same I too am a retired nurse and reading everything like you will have a better knowledge base to ask questions , I feel out of my depth with this and friends not knowing what to say say it will be fine which it’s not so thank you xx

WW expresses things so well. My husband is in the Gleason 9 club and what we have learnt is that there are many different treatment pathways on this journey, as individual as each person on this rollercoaster you have now embarked on. I am a microbiologist and have also had to translate the information to my husband, literally as all his reports are in Greek which is a challenge at times. I sometimes want to scream when the doctor's say how well I am coping because at times I feel like a swan- serene on top but desperately paddling underneath. We were catapulted into treatment within days of diagnosis and didn't know what had hit us. You do find the strength to deal with it. Three years later he is on the next leg of the journey with chemotherapy. We have settled into the new norm of regular doctor's appointments, blood tests, 3 monthly MRIs (with scanxiety) but along the way manage to enjoy ourselves and have a good quality of life.

Hello JEP - Welcome to our community - we aren't a bad bunch.

I think the ladies above have covered the diagnosis part and reaction very well.  I can fully understand your feelings and my reply is as a man - and a member of the Gleason 9 club!!

The initial diagnosis s a shock - the information given to you is very minimal and vague and you have no idea  - it's cancer and that's it. However it's not the end of the road but the start of a journey.

I am married to a retired A& E nurse and she has been my rock along with the people of this Community - I owe both sets (wife and Community members for where I am now!!).

Yes - it takes time to digest everything - and then it's a wait for treatment - but with a Gleason of 9 plus M0 N0 the treatment plan should be with a view to being "curative". If it helps you can read my personal journey  - I am 21 months down the line - and feel amazing - by clicking on the icon of the beach.

I hope this helps - feel free to ask any questions, however trivial they may be - we are all here for you and your husband on this unexpected journey.

Best wishes

Brian.

We had a similar issue with our GP after my husbands diagnosis with a PSA of 6.94 he got access to his online gp record and I found an abnormal result 4.9 in 2017 or 2018.  A couple of days later that result was no longer there so he messaged the surgery for an explanation. They said there was nothing on his records about this and it was impossible for them to have removed it. Hubby couldn't remember having a test then.

I also got access to my records and my follow up mammogram result was missing when I was recalled and given the all clear. I did however find another ladies results, complete with her name address and other contact details. When I told them they said they would remove it. This was at the beginning of May and it is still on my record. I took a screenshot so they can't deny it and I am contemplating contacting the lady to tell her they've breached the data protection laws.

Like you I am wondering if my hubbies diagnosis wouldn't have been so bad. It also took over a month and a half for him to get a PSA test when he asked for it and 3 months to get his diagnosis.

Thanks GR1 , it’s not acceptable usually with these errors it’s a system failure, I like you am so angry and feeling lost and emotional, we expected a cancer result call it gut feeling as he’s never had symptoms and MRI report was a PYRADS 5 T3 M0 N0 but I’m in shock from the Consultant saying this is an aggressive cancer we need to act fast well it’s  had 18 months of growing

• On my own today feeling tearful and lost I’m so glad I can talk to people on here thankyou x

Brian the MRI was PYRADS 5 M0 N0 the Gleason was 5+4 =10 said avoid surgery too many complications no radio and chemo and PET scan so he must be thinking of spread  any ideas?

Hi Jep

Just noticed your last post.

U say no surgery, I understand that, not alway appropriate.

Then u say no radio or Chemo.

Am I reading that wrong , cos wth NO,MO normally last two options ok.

Steve