Results Day

Hello Perry1919 

A warm welcome to the online Prostate Community from me too. I am sorry to find you here.

I think the post from Alwayshope has said very much what I was going to say. I would just add that I am also a Gleason 9 with lymph node involvement. I am 30 months down the Hormone Therapy / Radio Therapy journey on a "Curative Pathway". I had a couple of other complications during my journey - which you can read by clicking on my avatar.

I hope this helps - if you have any questions - however trivial please ask - you are more than welcome.

Best wishes - Brian.

Hello

I’m glad you reached out but sad that you’ve had to in these circumstances. It is like entering a bad dream as if a fog of grey has descended on life in general. At the moment I’m reeling as it’s frustrating with our surgery and that knocked my positivity. Everyone else has been so good. I’m hoping it will return as we need it.

Very similar diagnosis to my husband. Wishing your father well on his journey and please feel free to message me anytime. Happy to be a prostate pal.

I completely understand.  The past few weeks have been a whirlwind of appointments, tests and results. We’ve never had to visit the hospital so much before. Such a strange feeling.

Thank you for your kind words. It means a lot. 

Sending an equally big cuddle 

Hi GilliB  - felt compelled to write from Wetherspoons pub in Heathrow over a pint of Guinness before my flight to the Alps. Right at the start, you said that your husband had no symptoms and was found by chance during a medical for a new job. Keep that uppermost in your mind. No symptoms.  He is the same man as before diagnosis- it’s just that you have more knowledge about something you can’t see.

hopefully, hormone therapy will stop the cancer in its tracks and chemotherapy & radiotherapy will do the trick to stunt it’s growth for many, many years. Waiting in the wings are several follow up treatments, and development is happening as I write. This is FAR from over.  We are all mortal, and because this was found by chance, your husband (with the therapies now available) is more likely to die with prostate cancer than of it.  My friend started with a PSA of 2,016 (yes, that’s the PSA number not the year) and - after chemotherapy and advanced hormone therapy , he’s now 0.03. 

I would hope that, in 6 months time, you will both look back on these dark, uncertain days and enjoy the certainty of positive days and experiences together that have followed. My wife and I have been there (T3a) - we both remember those days well and they undoubtedly brought us even closer together.  Take a deep breath - the fact that you have joined our little band of brothers and sisters means you’ve got this.  You will come out of the other side - I’m sure.     AW

GilliB said:

as he understood the PETscan report so much better although rather bluntly he said he thought it was more likely to be T3bN1M1a and life expectancy 6-7 years

This is an aspect I don’t understand, from your private consultation after a grading of T3bN1,M0.  I disagree with that life expectancy. Also, how did the consultant come to the conclusion of an upgrade of distant mets from M0 to M1? If you stay with the T3bN1M0, this is still curable via radiotherapy and hormone therapy (the N1 means it’s in the lymph nodes in the pelvic area).  Hang on in there and stay positive.  He’s still the same man as he was last month before diagnosis. Let the NHS diagnostic pathway take its course. My instinct is that this story is far from over.   AW

Hi GilliB.

Sorry for using the word "Terminal" as we are "Treatable"

No I had no symptoms either which was down to me having a permanent catheter for some years.

My Prostate Cancer was also picked up by mistake as well via a bladder scan pre operation.

Yes the HT has put the cancer on hold which is great news.

My Stroke happened in Spain on the first day of a family holiday.

Prostate Worrier.

Hi Perry1919.

Thanks, yes the HT has worked better than we could have expected.

The HT will put the cancer on "HOLD" and "STOP" it in its track's.

Currently the consultant seems very happy we me just being on "HT" but I have got "CHEMO" in reserve in readiness for any change.

I have tried to keep things as normal as possible but I do get "Tired" more and I also have "Hot Flushes"

Prostate Worrier.

Alpine Warrior 

Thank you.

I read this to my husband. He’s reluctant to join as he feels a fraud at the moment with no symptoms and being well. He enjoyed the humorous PSA comment. We are surviving through black humour. His 60th is in 3 weeks time and daughters have offered to buy a shaver for his head and a skull cap. Needless to say this makes me cringe but I have to smile. “Keep calm and carry on”.

I really appreciate you taking time out before your hols. Something we need to look at and understand at some point.

G

It was an interesting time. Sitting waiting for results and husband still feeling a fraud and expecting bad news but also possibility of nothing there really.

We went to private urology consultant as we’d been told 6 week wait for biopsy then 2 weeks for results. I don’t think my nerves were strong enough for that timeframe. On 1st May we were looking at T2? T3a N0 M0 by 22nd it was T3b N1M0 and by the end of the day with a further visit to Urologist, then confirmed by Oncologist T3bN1M1a.

Waiting for next steps and quietly going to push where needed.

Enjoy your holiday. 

Don’t believe what your doctor said about life expectancy …. I know some patients were given 3-6 months to live and they are still living now after 11 years.

I found this here and it supports what we all said about the false declarations of some doctors about life expectancy.

Read it please