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Another new journey...

User
Posted 26 Jul 2019 at 12:16

Hello, this is my first post, just wanted to introduce myself. Having recently been diagnosed I thought it would be good to get educated in the ‘real world’ as it where, booklets and handouts are much needed and appreciated however, reading/discussing things with real people in real situations can give another perspective. Having visited my doctor because I was having trouble peeing I had a PSA test that afternoon, was rung at home by the doctor the next morning and then within the space of ten days I had had every test and probe and scan than I ever thought possible! This must be serious I thought, these things take weeks and months  to arrange normally. Obviously it was serious, and the speed at which the system managed my diagnoses was a real tribute to the NHS, when the things get serious they always seem to come through. Once my diagnoses had come through however, (Gleason 7(4+3), PSA 66, T4, NX, M0) things started to sink in, questions where forming in my head, realisation (OMFG!!!!), mortality, (will I outlive the dog), practicality (those over 50 adverts suddenly seem appealing!) all of these things appeared quite quickly. Once I sat down with my Oncologist I realised that they don’t like those kind of questions, and only reply (understandably) with statistics, forecasts and test results, it became clear that I needed to talk with like-minded people in similar situations and day to day issues. So here I am, my treatment plan has started, I’ve started hormone therapy which will continue for approx two months before Chemotherapy (ouch), then Brachytherepy (double ouch) with some hormone treatment continuing for the rest of the two years, he has given me the option of the Stampede trial too which sounds like fun. So there we are, that’s me, forgive my jollity, but poking fun at this thing is a defence mechanism that serves me well. I’ll be around, reading and asking questions as they arise, hope to converse with some of you soon. SB

User
Posted 26 Jul 2019 at 20:33

Simon

So sorry to see you here.  I’m 49, so just a little bit younger.  I was T3b, so I have to admit I don’t fully understand the T4 journey you’ve just commenced.  It’s crap having this disease but having it so young makes you feel like you’ve been shat upon from on high.

others who know more about your treatment pathway will be along soon, hopefully.  Don’t forget to call the PCUK nurses if you have questions - they’re brilliant.

Ulsterman

User
Posted 26 Jul 2019 at 21:21

Simon,

Sorry you're here, but you will get great support from fellow suffers.

First thing, order the Toolkit which is packed full of information leaflets about PCa.

STAMPEDE trial has loads of branches. Do you know which part of it he's thinking of for you?

Do you know where your prostate cancer has spread to?

Do you know why you are still described as NX (unknown)? I would have presumed you've had a mpMRI by now (hopefully before the biopsy), and they would know if there's spread to lymph nodes or not.

User
Posted 27 Jul 2019 at 00:40
Thanks for the messages Ulsterman and Andy, and I will get the toolkit stuff as suggested. I have received a letter today detailing my conversation with my oncologist and I got one of the details wrong it’s N0 not NX, although it’s not clear if it has spread to my

lymph nodes, two are deformed but it’s not conclusive. I think he is airing on the side of caution as my PSA is relatively high and the chances are it probably has, hence the early Chemo as well as the radiotherapy/hormone treatment. With regards to the Stampede trial he has suggested the metformin comparison as opposed to the hormone patches as he said that this has been associated with unacceptable breast tissue development, which considering I think my ‘moobs’ may already be a DD so i don’t want to make the wife jealous!!

User
Posted 27 Jul 2019 at 07:28

OK. NX normally means lymph nodes not checked yet (no scan report yet), but it can also mean the scan was not conclusive either way.

I'm not on STAMPEDE, but I read the data on Metformin woth PCa and asked to go on Metformin, which my GP was happy to do (and my consultant also said was a good idea, although the GP and consultant didn't see each others' comments on this).

My PSA was 57, and in spite of an additional scan because they thought it likely to have spread at that level, no spread was found. However, I am being treated assuming micro mets could be in pelvic nodes, just for safety.

User
Posted 27 Jul 2019 at 08:10

Hi Simon

Welcome to the T4 club, I was diagnosed a year ago and have "enjoyed" 12 months of intensive treatment HT/CHEMO/RT.

My PSA is down at 0.1, I've booked to visit Australia for 6 weeks in January, looking forward to that.

I guess the most important fact I've learned from my Onco is incurable doesn't mean terminal. Just need to shrug your shoulders and get on with it.

 

John

 

 

User
Posted 27 Jul 2019 at 12:04

John, thank you for your inspiring comment, Australia sounds like a wonderful idea! I did think I should do some research on the Stampede trial by booking a trip to a ranch in America but the wife saw straight through it unfortunately. It’s almost as if she knows how my brain works! I’m not quite at the point of making buckets lists or anything, as for me it would quite quickly create a downward spiral as each one is checked off the list. Shrug your shoulders and get in with it is sound advice and something I will endeavour to do whatever’s happens. 

 
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