Newly Diagnosed. Upset, angry and terrified

Hi WW, thank you so much for the time you took to write such a helpful reply. It is very much appreciated. I will take your advice and record the dates and names of all people I come into contact with regarding my treatment and chase accordingly. It is a very stressful and worrying time as you know. I'm early in the process. My anxiety and fear levels are at their worst ever levels. It's so good to hear about you and your husband. Great words of wisdom there about enjoying life which I hope to do as soon as possible. Thank you again, regards, John

Hello John

When we got the news, my husband retreated within himself and refused to discuss it with anyone - even the doctors ! I likened him to a startled tortoise pulling head and limbs into a shell. I couldn’t stop crying! I couldn’t sleep! I could barely think of anything but the cancer. What made it even worse is that I don’t cry gracefully - loads of tears, runny and red nose, blotchy' eyes etc. this was at a time when we had to wear masks in health care buildings! How on earth do you blow your nose or mop your tears while wearing a mask?!!! I can laugh about it now but it was one of the blackest times of my life! It felt like the end of the world! I was also very lonely because my husband, my soul mate, was there in body only and nothing else. This is how I came to this forum. Some very warm- hearted and caring people - all strangers- propped me up during those dark days and kept me going until things had settled somewhat. These very same people are still here today and I am forever grateful!

You are not alone in this and we have all been through this journey! You will get through this time of tough emotions! Hang on in there! 

Hi John. I had a very similar diagnosis last February.  I opted for surgery and I had operation on 20/3. I am doing well. I recovered well,had minor incontinence issues which resolved quickly( pelvic floor exercises) I am now on 6 monthly psa blood tests. I am not advocating for surgery but it has worked for me thus far. Whatever option you choose, treatment is excellent now. I am not sure why Consultant was negative but if you haven't done so already post your diagnostic details on your profile and the big guns on this brilliant site will come to your aid. Best Wishes. S 

Hi JPMJIG.

Good morning and welcome it's great to meet you today and sorry that it's under these circumstances.

Yes I am 58yrs old and I was diagnosed last June 2023. I was told that my cancer was "Terminal but Treatable" 

Yes I was also told that it wasn't good as well he was also very cold to start with. He was not very positive to start with which was very hard to take considering I had just been told that I had "Terminal Prostate Cancer"

My PSA was a whooping 1000+ but having been given hormone therapy injections and tablets straight away my PSA now stands at 1.79.

The consultant has now mellowed dramatically and when we meet every 3mnts he keeps saying that "I will be okay"

Yes "Positivity and Hope"are the only thing's that I think about from the minute I get up to the time I go to bed.

So both of these are the only way to think about as this will help with your fight this horrible disease!!!!

Prostate Worrier.

Hello John,

It's a real shock when you find out the diagnosis and it does take some time for it to sink in, but don't despair, it's not as bad as you think despite your consultant's comment.

I was 59 when diagnosed in 2016 with stats almost the same as you - PSA 4.3, Gleeson 4+4 - later revised to 4+3 - and T3a. I had Hormone and radiotherapy with curative intent and was clear with a completely normal lifestyle for 8 years.

Unfortunately I was recently diagnosed with local recurrence (picked up by regular PSA tests, no symptoms) and have just started new treatment but now at 67 going on 68 next week my consultant informs me my outlook on completion is at least several years before anything else is even likely to happen - and then if it does he has other treatments up his sleeve (not to mention whatever new ones are in the pipeline already and will be available in future).

So, despite your consultant's verict, your outlook is really nothing like as bad as you imagine - once you are over the initial shock of course. I hope all goes well for you.

Hi John (JPMJIG ),  sorry you have joined our club but welcome.  I fully understand where you are at present.  We couldn’t get our heads round the fact I was fit and not showing any signs of problems.  Every waking moment seemed to focus on cancer.  Since joining this site last year I have seen loads of ‘newbies’ in exactly your position.  Wow what a difference in a few months listening to the great info from this group.  I can’t offer anything other than it will get better in time.  

Let’s analyse where you are.  My PSA was 74 at diagnosis and you are 6.  My Gleason was 9 and you are 7.  My staging T3b and you T3a. You are 57 and I was 67.  All your indicators are better than mine and by the way, my diagnosis was over 7 years ago.  I’m still here and hoping to keep going for a bit longer.  
None of us can predict what the scan results will be, but I think with your stats you will probably be ok.  Either way, loads of treatments available and as research improves, many more are now curable.

Please ask any questions on here and don’t read Dr Google!  Best wishes,  David.

Hi John.

I pretty much fully understand how you feel.

My diagnosis was at the end of April.

Like you, I suspect, my mind said that cancer equalled death.

I barely remember anything the first week after the diagnosis.

I do remember going to see a doctor at the GP surgery to get something to help me sleep. He described what would happen next, went through various processes, and greatly helped me.

Then I discovered this community, and that was life changing.

Other people had this!

A lot of them had much more complicated issues than me!

They were still here, and talking about it frankly!

With humour!

One of the first things I read was "learn everything you can". I can disappear down a rabbit hole with the best of them, and I promptly disappeared down this one.

My cancer is slightly worse than yours. 

It is defined as T3b N1 M0. My PSA was 7.39 and the Gleason Score was 9, which meant that there was no mucking about with watchful eating.

The urology clinic was a bit depressing, but they did immediately put me on Hormone Therapy, and passed me onto an oncologist.

From my own reading I discovered that my cancer was "locally advanced". It had got outside the prostate and to one lymph nodes, but the CT scan and the Bone scan confirmed that was it.

I am being treated with curative intent (not guaranteed but life preserving) and have faced the fact that my driving is more likely to kill me in the medium term than this.

If you want me to I can send you links to the stuff that gave me hope. That depends on h

ow much you want to know.

In the meantime, take a deep breath and look up. All is not lost. You are not lost.

Steve

Hi John ,

I’m sorry you find yourself in this position, all the emotions you are experiencing are normal , that’s exactly how I felt .

i was diagnosed in May 2021 , the same Gleason and stage as you however my PSA was 203 , high I thought until I found out guys on here have it in their thousands , been through all the treatment RT/ HT , Side effects of course affect your quality of life to begin with , however after a while they settle down .

Three years on for me my PSA is raising but I feel well , on the 12th of this month I passed my Category D on my driving license , so my message to you is to keep going , there’s years ahead for you , I wish you all the best.

Tony

Hi John,

Sorry to hear of your diagnosis. I've had mine a year ago, age 49, also T3a, though gleason 9 and PSA 42.8 . Yes this feels terrifying and surreal. What I try to focus on, is that T3a is thankfully fully treatable and the end goal is getting fully clear of it, rather than living with it and managing it (which people with T4 has to do). So it's going to be a crap few years to get through the treatment, but we will emerge victorious on the other side. 

So far I've had two months of radiotherapy, and am now 9 months into my 3 years course of hormone therapy. I cant say I'm very cheerful, but trying to focus on the fact this is temporary. 

This community really helps in airing your thoughts with people who are going through the same. 

Hope this helps.

G

Hi JPMJIG,

my OH was diagnosed in March WITH T3B  query  lymph nodes and surgery not an option  .  we had our first meeting onThursday with an Oncologist. He was very straight to the point and we will not know until 10th October if he’s on a curative  pathway. We were the same when first diagnosed and our heads  were all over the place .

This group of fellows are fantastic and  have supported us throughout our 17 week wait  He is on HT  at present  and depending on his MRI in September whether it will be just his prostrate that has radiotherapy.

Today we have taken the decision that PC will work round us not it controlling our lives . It’s like a cloud has lifted with the support of genuine people in this group .

Good luck in what you decide but please keep in touch  and ask anything as someone will answer .

. Liz & OH xx