Such a shock. Thought he was as fit as a flea for his age. MRI appears to show significant cancer

Babychamshine613e2e said:

I’ve read a lot of personal experiences on here and it’s terrifying

They’re not all terrifying.  I had some pretty radical radiotherapy (two types!) and hormone therapy - and two years later I’m feeling great and living my life pretty much as before.  Have a read of my bio.  AW

I’ve read your bio and it’s impressive!  Congratulations.  It’s a good read.  We’ll see what’s on offer for my OH.  I haven’t yet had time to look at the cancer hospital in Sheffield.  Thank you

Hi and welcome to the group

with some minor adjustments I could have written your post. My LH is 9 years older than me and has always been fit and active. He started with symptoms of frequent peeing and we didn't think too much of it as he was getting older. But when it got worse he went to the doctor who did a PSA test which was 57. So quickly put on 2 week referral.

His MRI showed what looked like cancer in both lobes and his biopsy showed Gleason score 9 with most of the 18 sample's affected.  He then had a PSMA PET scan which showed the nodes and bones to be clear but as the cancer is high risk they strongly suggested HT followed by RT. He has been on HT for about 2 months so far with virtually no side effects so far. 

The diagnosis part of all this was horrible and stretched my nerves to near breaking, but just hold your nerve. I didn't really believe it when people said it would get better once we had a treatment plan but it has. He has to have his hernia repaired before his RT and he got a call with an appointment in 2 weeks this afternoon so things are moving forward!!

Take care and I hope you get all the answers you need soon

HiBabychamshine613e2e . You are both now in the really difficult phase of the tests, diagnosis and treatment journey, not having the complete picture, waiting for results and not yet knowing the plan going forwards. It may not feel like it but I think your OH is now in a much better place than before his PSA test. He is in very good hands, on a well-trodden diagnostic pathway and, if PC is finally diagnosed, any treatment offered will be amongst the best available anywhere in the world. Once he starts the treatment stage you will hopefully feel the light at the end of the tunnel is definitely starting to get much brighter. You might consider me a bit weird, but I actually looked forward to starting RT. Yes, there were a few minor side effects with my full pelvic treatment, very manageable, and now, four months on from RT, I feel my new normal life is very close to old normal. His ‘whatever it takes’ attitude is amazing!

During the tests phase but prior to a firm diagnosis I updated the insurers and our joint annual holiday policy was changed. I had to pay an expensive personal supplement on a one-trip basis for the holiday abroad which we had already booked. That turned out to be a real break away from the process and we really enjoyed it. Following diagnosis, but before treatment had been completed, the company we used wouldn’t consider insuring me, so I was taken off the joint cover. I then couldn’t find one which would... Once the RT treatment had been completed and the latest PSA result was known, I was able to insure myself again annually at a rate somewhat less than I was expecting, after the previous supplement. Based on that we have recently returned from a much-needed ten days in the Canaries, each of us on a different policy.

And I think (hope!) the mention of 6 months was an exaggeration to illustrate PCa is relatively slow growing. The NHS target is the whole journey should be no longer than 62 days for 85% of people. Something to keep an eye on. I was one of the 15%, part my body’s fault, part NHS admin. With the RT pathway I presume 62 days ends when HT is started rather than RT starting as there’s often a 180-day gap between the two.

If you would like to read my experience based on a T3 N1 Gleason 9 diagnosis just click on Amplitude above.

Hi my friend, and another warm welcome from me, I can't really add to what the guys have said other than to say a urologist is no oncologist, and Weston Park is a good hospital, but like Donny Royal, the parking is awful, though there is a local"i'm from Donny too," charity that takes patients for treatment, door to door, and it does have a lovely cancer drop in centre around the back and a lovely cafe on level 3. Best wishes for your results.

Eddie xx 

Hello Babychamshine613e2e  and welcome, 

I’m so sorry you’ve had to join this forum, but honestly, the support here is incredible — it’s really helped us so much.

My partner was diagnosed with advanced metastatic prostate cancer very recently, with widespread bone mets. He’s 56, nine years older than me. Reading through other people’s profiles gave us a lot of comfort and perspective, so I’d definitely recommend doing that if you haven’t already. We have everything crossed for you and your partner, hoping this is confined to prostate

Life has certainly changed, but it’s still full of enjoyment and happy memories. We don’t ask about prognosis — it feels irrelevant, as nobody truly knows. We all have expiry dates, regardless.

We’ve actually become more sociable since the diagnosis! Well to be honest, Paul has always been a social butterfly, me, not so much so its taking some getting used to!

Once diagnosis and treatment was established, we got a good travel insurance quote through Insurancewith, and we’ve managed trips to Spain and Germany, with plans for Poland and Fuerteventura — plus lots of random little adventures in between.

This whole experience has really taught us to cherish life. Acceptance has been a huge part of coping — we can’t change it, and of course it’s not what we wanted, but it’s here. All we can do is make the best of every day.

Wishing you and your partner all the very best 

Morning mine is confined in prostate but mri showed nothing in bones so try. Not to worry to much wait for results I’m on active surveillance 

Thank you for your encouraging response to my post.  It’s great that your LO hasn’t had much in the way of side effects with the HT.  fingers crossed my OH will tolerate it well if that’s what they start him on.  I’m very up and down.  Yesterday I was in a really good place but last night I hardly slept.  I felt very frightened for us both.  I’m better again today.  Another appointment came through yesterday for 4 December.  It just says to attend the urology department.  It will be 62 days from the referral.  Perhaps they’re going to talk to him about his treatment plan?  I hope so; I believe you (and others) when you say it’s easier once we know the diagnosis and treatment plan.  I’m pleased to hear that you’re a couple of weeks closer to the next stage.  Good luck and thanks again.

I’ve read your experience and thank you very much for the info above.  I’m unsure what’s supposed to happen within the 62 days.  My husband has just got another appointment letter which will be exactly day 62. He has the bone scan on 25th November and this latest appointment letter asks him to go to the urology department but doesn’t say what for.  It’s great to hear that your travel insurance is sorted and that you’ve just had a well deserved holiday.  I’m going to put a new post asking opinions on when to inform the insurer.  Currently I don’t know what’s what myself.  Thanks again,

Fingers crossed it’ll be the same for us.  I don’t know why the urologist said it looks to be confined on the mri but with that level of cancer it’s likely to have spread to the bones.  We’ve been very positive at each stage. first the PSA won’t be cancer, then it’ll be slow growing and easy to treat.  Then the urologist saying that and stating if it’s in the bones we might treat the bones and nit treat the prostrate.  Honestly, what’s that supposed to mean?  Someone on here said that a urologist isn’t an oncologist (meaning, I think, he’s not the expert and the treatment plan isn’t up to him?).  Thanks again