An unexpected diagnosis.

Hi Peter, do you regret having surgery? Like you, I had skin cancer and so like you, my immediate thought was 'surgery is the way to go' but after coming on here and trawling this site, I'm going to be asking a lot of questions when we go to Addenbrooks. There's obviously compromises to be made with what ever treatment one decides to go with. Whilst I can't decide for him and will wholeheartedly support what ever decision he makes (if he has one), as his wife, I consider myself fully involved and so if he doesn't ask the right questions, I will. 

Hi Maria,  I have no regrets at all of having surgery.  So far it's gone as the surgeon said it would although rather slower recovery than he said.  I also know my true pathology which upgraded my Gleason and know there were negative margins.  If I was younger I might worry more about my sex life, but then again...

I still believe that what the Dermatology Consultant told me applies in many prostate cases, 'that you can have the laser treatment but cutting it out is the gold standard'.   Well you don't know if there's something just outside the prostate that RT might have got, but then you don't know RT has got it all anyway and you won't know for up to a year when your psa settles after continued hormones.  With an op you know in 8 weeks your psa should be undetectable, and you can have RT later.

In my opinion it's best to know when you go for the appointment what you want and how to handle worse cases, no umming and ahing.  Make sure things move on and not you'll come back to let them know. 

Regards Peter

Bones are clear  

Great news about no mets in the bones. Iam sure it’s been a long month with a lot to take it.

How are you and OH talking? Has he been on the site to look at threads and comments? You mentioned he’s self employed and worried how it my affect him. I was dx 4 years ago at PSA 392, Gleason 9 etc. One thing I found was being able to chat about it with OH, sometimes in depth and other times just wee comments. Get used to chatting about it, you need to, it’s part of life now!

There’s a lot to take in and another thing to not get caught up in is how long I got left ie 8 years. It could be 5,10,15 or whatever, treatment has progressed so much even in the 4 years I’ve been dx.

Good luck

Steven

We now have a copy of the letter from the urology clinic to our doctor. It goes as so:

Diagnosis: Intermediate risk adenocarcinoma of prostate T1c disease Gleason 4+3; presenting PSA 19.33

MRI shows PI-RADS 5 - T3b NOMX

Lower urinary tract assessment -IPSS 24 quality of life 4;

Q-max 19.4 m/second in voided volume of 157 ml with PVR of 120ml

WHO 0 ASA 1 BMI 26 (weight 89 kilos, height 82cm)

We understand that adenocarcinoma is the type of cancer and we understand the PI-RADS and T3b NOMX but what is IPS 24 quality of life 4? and what is T1c?

Hi, 
I suspect the T1c was an initial diagnosis before the MRI scan... which then uprated to T3b N0 MX 
I'm obviously no expert... but with a PSA of 19.33 I'd be very surprised if it had remained at T1c .. 

I started out as a T1 ...but then progressed clinically to a T2b .... Finally after an RP my histology showed that I was in fact a  pT2c .. 
The Gleason score can also differ after analysis in the lab .. 

Best Wishes 
Luther 
 

Thanks for the responses and the links Mr Angry.

We both work full time Steven and we will both continue to work full time if we can. We are rock climbers haha. Rock climbing takes a lot of concentration and stamina so we may have to come down a few grades. We are also cyclists which may need to be modified to how S is feeling. As I've always struggled on behind him, dropping down a gear may frustrate S but it will be good for me. 

Hi Maria

I'm a rock climber and self employed too!  I had the surgery, followed by hormone treatment and radiotherapy.  My climbing did suffer (obviously!), and the fatigue made work challenging, but almost just about manageable.  It was hard though.

Two years on, and I'm now back to fully fit, climbing hard again and working much longer hours.  And enjoying it!  It is a slow-ish recovery, but life really is not written off.  A few small changes for the side effects of all the treatment, and on we go.

Hope it goes well for the two of you.

cheers

Graham

Hi Graham and wow, another adrenaline junky! Where do you climb? 

I think in some ways its tougher when you are self employed. Did your business suffer? S's business is still quite young and so still establishing itself. That said, he's got a good team of men who are more than capable of holding the fort for a while.

Glad to hear you are back on the rock (love the picture) and working harder than ever. You are all so inspiring.