Devastated.

User

Posted 18 Nov 2020 at 18:42

Yes it does say T0, it did confuse me as I couldn’t find any reference to T0

User

Posted 18 Nov 2020 at 20:37

Hi Norrie

sounds like good results ... hopefully many good years ahead for you!

User

Posted 18 Nov 2020 at 20:45

Originally Posted by: Online Community Member

Yes it does say T0, it did confuse me as I couldn’t find any reference to T0

T0 Doesn't make any sense. Must be a mistake. N0 and M0 are good though, means no spread.

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/tnm-staging

https://prostatecanceruk.org/prostate-information/prostate-tests/scans-to-see-if-your-cancer-has-spread

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 18 Nov 2020 at 20:53

Norrie the T staging comes from MRI report. Have you had MRI yet? My husband had the TRUS biopsy first as it was the start of lockdown and they couldn’t offer him a MRI. He had one later down the line.

User

Posted 18 Nov 2020 at 20:59

I don’t know what MRI is, I just know I was put in a long noisy scary tube, sorry I can’t be more specific I’m just a stranger in a very strange land .

User

Posted 18 Nov 2020 at 21:36

Originally Posted by: Online Community Member

Norrie the T staging comes from MRI report.

The T staging usually comes from combining the MRI results with the DRE (finger up the bum) and the patterns seen in the biopsy cores. T0 is used only rarely so it is possible that this is a typing mistake on the report; if not an error, it means they are undecided what staging to give it, or the staging is yet to be agreed by the multidisciplinary team.

The fact that the nurse feels confident you will be suitable for curative treatment is a good sign!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Nov 2020 at 21:58

I registered for the ‘EMIS Patient Access’ app, which means I can see all my medical records at the same time my doctor gets any test results.

Not all practices offer full access though for some strange reason, so check with your GP if you can register for it.

Best of luck.

Cheers, John.

User

Posted 18 Nov 2020 at 22:18

The long noisy scary tube is an MRI scanner ("magnetic resonance imaging") 😁. Basically uses an intense magnetic field and radio waves to see inside you.

Cheers,

Chris

User

Posted 18 Nov 2020 at 22:24

Read Chris's reply again. He's exactly right! This is FAR from doom and gloom. Yes, there will be some changes whatever the treatment, but often temporary. It's only been a few days so being in shock is normal, especially when you don't have enough information yet to understand the situation.

Albert

User

Posted 18 Nov 2020 at 22:37

Originally Posted by: Online Community Member

The long noisy scary tube is an MRI scanner ("magnetic resonance imaging") 😁. Basically uses an intense magnetic field and radio waves to see inside you.

If you had a cannular fitted and a machine gave you an injection about 3/4 way through the MRI, this was a contrast dye (gadolinium) and the scan was a multi-parametric MRI (mpMRI) scan.

This helps with imaging any cancer in the prostate, although radiologists are now saying they can get just as good images from 3T MRI scans using bi-parametric scans, which don't have a contrast dye used.

User

Posted 20 Nov 2020 at 12:52

Norris hi.

I was diagnosed 12 months ago and like you was devastated.

I made a decision early on to have removal ,robotic surgery, which due to delays with covid didn't take place till end of july 20.

I am 14 weeks on, back at work , had no post op issues, pain,etc. Am nearly at normal with incontinence. It has not been a problem as I was expecting.

Stay positive. I probably like you and many others searching the internet. Stay focussed on prostate cancer uk website or NHS. I found lots of factual help. Also any issues concern you have speak to the helpdesk nurses . They are truly brilliant.

Regards

User

Posted 20 Nov 2020 at 20:26

Tried to add to my original post, really not sure about all this tech stuff, anyway after going through all the paperwork I was sent, had a sleepless disturbed night and a conversation with my nurse this morning, I’ve decided to go with the operation, really worried about it and I really don’t like the thought of the catheter. There was some confusion about my T number ? It said T0 which was confusing ? The nurse said it meant that they hadn’t found any lumps or ‘ridges’ ‘rough areas’ on my prostate so it must all be inside ? The Scan I had said there was a ‘lesion’ on it ? Anyway surgery it is, so worried and thinking the worst ‘what if’ etc. Hate to be going on about myself when there are so many others in here going through the same thing, maybe if I can get better I might be in a position to be of help in the future, once again I just can’t thank you all enough,

User

Posted 20 Nov 2020 at 23:27

Glad you've made a decision. Don't try to play the "what if..." game; just go with the flow and get yourself sorted. You've got a treatable condition and it's being treated. The future is good - look forward to it. You'll get through it absolutely fine. Stop worrying!

Cheers,

Chris

User

Posted 21 Nov 2020 at 08:55

You've made a good decision

I am 65 and had never been in hospital before or had anaesthetic, and everything went so good, when I look back , i was worrying too much. Put your faith in the hospital staff who know what they are doing, and stay strong.

Not sure if you are a fit/active person, but I would recommend you "train " yourself for surgery. get yourself fit, not super fit, but healthy. Go for walks, jogs etc, and this gives you a feel good factor too, mentally. Do your exercises , pelvic floor, they really do help. I completed hundreds of reps , not because I had too, but they really do help, post surgery. Yes I wasnt looking forward to catheter either. I had mine in, came out and was home with catheter for 10 days. During this time I was able to move around, go for short walks, and there was no pain for me. I had the catheter out, it was done in under 2 seconds, and there again was no pain. No after effect. Not sure whether this is the norm, but for me , it was.

Stay positive, as you can, take comfort from those posting here, stay strong

User

Posted 21 Nov 2020 at 14:23

Norrie

Just try and stay calm and think about the future ( I know its easy to say but have been where you are)

You have made a decision so think about what you can do to optimise the outcome. Are you fit ?if so get fitter and if not start doing some walking (assuming no medical issues) and pelvic floor exercises

The catheter is no big deal. Its inconvenient and feels a bit odd but it will be fine.

Try and channel that worry into something you can focus on.

Have you some specific concerns that maybe people on here or your nurse can help with?

Best of luck

User

Posted 24 Nov 2020 at 09:31

Morning folks, hope you are all as well as can be expected. Could do with some advice please, I’ve said I’ll have surgery to remove the prostate but have spent a sleepless night wondering if I’ve made the right decision ? Gleason 4-3, psa 2.5 and a T0 ? The o was confusing but the nurse said although they could see a ‘lesion’ on the prostrate they couldn’t feel any lumps or ridges so it’s a T0. I’m wondering now should I have radiotherapy or go ahead with the operation ? Pro’s and con’s of both would be helpful please. I was told that if I have radiotherapy and it comes back then it’s more difficult to remove the prostate. If I have radiotherapy and it comes back, is there anything else can be done ? The hospital I go to has a far above the national average numbers for prostrate removal, don’t know if I could or should read anything into that ? Thanks in advance for any comments.

User

Posted 24 Nov 2020 at 09:46

Norrie , as I previously mentioned, I had no symptoms, no issues , my PSA was 5.5 average, my Gleason 4+3.

I decided to go for Surgery, as I understand, should anything return after surgery I can be offered Radio or Chemo therapy. The alternative is not so easy or possible.

I met with my consultant surgeon who put me at ease very quickly. I had to wait from mid March till end of July for surgery.

Surgery happened, recovery now 14 weeks, on, no discomfort, very little if any incontinence, I'm back at work, and I regularly exercise, running, aerobics etc.

For me it was the best and right decision, and I would recommend, but I guess its down to you.

Stay positive , and as I mentioned previously I think, start doing the pelvic floor exercises and try to be in a healthy and fit state of mind and body . It really has helped me

regards

User

Posted 24 Nov 2020 at 18:12

You've made your decision. Stick with it. Don't start worrying about whether or not you've made the right choice - that's the road to anxiety and stress. Surgery and RT have pretty much identical success rates. Try to get on with life and get yourself sorted.

Cheers,

Chris

User

Posted 24 Nov 2020 at 18:45

Thanks Chris, it was a temporary blip, still a bit up and down but trying to focus on just getting it done, and being a bit more positive, it’ll take time but hopefully I’m moving forward slowly but surely, thank you for your encouragement.

User

Posted 01 Dec 2020 at 15:09

We all worry whether we made the right decision but I believe there is no harm in changing it either. I was up for the operation to remove and two weeks later decided on Bracytherapy . Best decision I have ever made but I did speak with 3 different doctors BUT MADE MY DECISION. If anybody needs help on low dose Bracy love to help.

Gleason 3+4 psa 6.8 good luck everyone

Notification

Join the online community now.