Hi Brian1981
Sorry to find you in our "club" - but there are many good stories on here and on the Macmillan Community pages.
Click on my name/avatar for my info....
Certainly the initial phase of diagnosis is absolutely awful, especially if you don't mind me saying in someone so young. There is hope - after a while things will calm down and a treatment plan will evolve and give you some structure to hang onto. This is an important step.
In terms of other stuff the guidance on here and the Macmillan site is useful and both provide good info about what questions you should be asking at consultations. It is important that you have support at these meetings - someone to listen to the bits you miss and to write stuff down, your head will be all over the place believe me!
I have found that talking about the problem to family/friends/neighbours has been worthwhile - just that casual "how are you doing" chat in the street can be so important.
If that doesn't suit then fine - again both Macmillan and PCUK have helplines - and they are good.
I have found the Headspace App to be useful (paid for) and their Coping with Cancer course has taught this old dog some new tricks!!!
Take each day as it comes, try and adjust to listening to your body and working out what is really important to you. Keep fit and active and eat healthily - and drop caffeine and alcohol if you can whilst on treatment. Prehabilitation is important for ahead on treatment - the better place you are in the better you will cope with what comes your way.
I have just finished my last course of chemo (3 days ago), feel rough but know it will all be better soon and I am looking forward to the summer (and then radiotherapy in the autumn!!)
All the best - stay positive.
CeePee
Best wishes - stay positive CeePee |
User
Thanks CeePee
Good advice here, am trying to stay as positive as can be the main thing I keep coming back to is that at least it's been caught early so hopefully will give me the best possible outcome.
Will definitely give the Headspace app a go, heard good things about that from a few people before now didn't realise they had a Coping with Cancer course.
All the best to you and best of luck for the autumn too.
User
Just a huge well done to you for pushing to get checked when you must have felt like running in the opposite direction. Great strength of character.
You have a lot going in your favour.
Age- I suspect the younger you are the better you are treated, I may be wrong.
A supportive partner. He'll help you get through this.
Your PSA is still fairly low.
There are lots of treatments for ED. They may seem fairly unappealing now but after a while it's just what you do. The caring and affection for the person is stronger.
Look into the NHS Squeezy App. A one off fee of £3.99 I think it's much undervalued. Husband has been doing it for nearly a year. Great for ED and incontinence prevention.
Try not to catastrophise. I have suffered from severe anxiety and used to be brilliant at catastrophising.
User
Hi Brian. Sorry you have to join us here but it sounds like you've been caught fairly early.
Why are they telling you that your entire right side nerve bundle would have to be removed if you are T2? If you are T2 the cancer should be contained within the prostate and therefore (well theoretically) the nerves should be able to be spared. I was diagnosed as T3a meaning the cancer had clearly broken through the prostate. During surgery, my surgeon ended up removing one third of my right side nerve bundle. Everything else was spared. The day after my catheter was removed I was able to get full erections and had only the tiniest amount of urinary leakage (like a drop or two once or twice a day) for a couple of weeks.
For now, as you prepare for treatment, keep yourself in the best physical condition possible. Keep your weight down, do cardio and also start doing keggle excercises from now all the way through your recovery afterwards. You'll be fine.
All the best.
-Mike
User
Hi Brian
Sorry to hear that you’ve had to join us but you’ll get lots of valuable support through the forum. Like you I was diagnosed at a young age 18 months ago. I found the early period of this journey the hardest, waiting for results and over thinking what’s ahead but now you’ve got results and a treatment plan you can concentrate on getting prepared for surgery. I was T2c and the surgeon offered me the opportunity to have never sparing surgery, I requested to go ahead with this as he didn’t think the tumors had broken through the prostate. I know it means that I could have a problem in the future but functionality is pretty good now with Tadalafil and after rehab using the ED pump. The Squeezy app is definitely worth using for pre and post op exercises. Listen to your body post op and build up slowly, it’s a marathon not a sprint!
Hope the CT scan has gone ok.
Jamie