Recently diagnosed Prostate cancer, feeling abit lost

Hi Mweb1998

Welcome to the forum, and the club which nobody wants to join.  The folks in here are a wonderful bunch and I am sure many will be along to provide support.

You can see our profiles by clicking on our names or the round symbol at the side.

In answer to your question - YES - we have all been there after that initial diagnosis. It is a horrible time for you and for any loved ones. The diagnosis is a shock to the system and I imagine all sorts of things are whirling through your mind, and yes we have been there. My own story started a year ago with an asymptomatic diagnosis and I have been through a bit the last twelve months - but all for the good.  My PSA of 953 is now undetectable.(see my profile).

The period between initial diagnosis, scans and biopsy and then the results is a very trying time. But please feel assured that once the results are all in and a treatment pathway is established you should feel much better about things going forward.

If you feel able you can add more details of your own  position into your profile and then with that more detailed responses can be made.

In the meantime please DO NOTGoogle - use trusted sources of information like the MacMillan site or the Prostate Cancer UK site - the PCUK site has some excellent publications and I would recommend getting the Toolkit. There is lots of info in that, and especially good the documents contain lists of questions to ask your clinical team.  Also remember that both organisations have help lines if you want to speak to a real person - the PCUK nurses were great when I called them, and I know it is the same with the MacMillan staff.

Please use this forum to vent, rage, question or simply tell us how things are going.

All the very best wishes 

KrisPy

I describe the early period as "My Lead Legs Days" when I was almost automated. Not knowing and what next caused me huge concerns. I am 18 months into stage 3 and still lost occasionally. 

Welcome and I hope that you will find this forum helpful, I know I did and still do.

But much more good happens than bad.

You are allowed bad days, but they do get better.

Hello there. Sorry to see you here but it's a safe place to be. I was in the same position as you back in early January this year when I was waiting for my biopsy results. The waiting was frustrating and I was coming to terms with the idea I was caught in a process and was going to have to take it step by step. It's a steep learning curve and I found out too much Googling could get confusing so I had to trust my clinicians as they took me through the process. Waiting on results so that you can find out what the next step will be whilst acknowledging to your self that you actually do have cancer is bewildering. All I can say is don't be afraid to reach out. There's lots of support out there. 

David

Hello Mweb1998 . You have made a brave post and are amongst friends on this forum.

Yes, feeling lost is part of this journey at first, probably for the majority of us. I knew my life was never going to be the same again when I was told the elevated PSA result, but I had no idea in which direction it was heading.

I think that lost feeling is because, at first, we know relatively little about our disease and we don’t really feel in control of what’s happening. Waiting for what seems an age for the results from the last investigation and waiting to find out what happens next certainly doesn’t help. The mind does tend to fill the gaps with irrational thoughts, mine certainly did. But rest assured it does improve when the tests are behind you, you have your diagnosis and you have a treatment plan in place. Good luck with your biopsy results.

Hi Mweb1998

Do u have any more info like , a few PSAs, what does MRI show.

Any more info can help give u some advice which may be able to help with your  thinking .

Best wishes.

Steve 

Good morning!

I first saw my GP about odd patterns in my urination, I had a PSA, then MRI, then biopsy, all within about 6 weeks. I remember feeling quite scared when I got the letter inviting me for the MRI. I'll be frank: I felt the way you do when someone close to you has died. I could not go 5 seconds without thinking about it. That must have lasted about a day or two at its most intense, but since then I have adopted a frame of mind which is basically this: 

• I am not being bombed;
• This is not in my brain or bowel or lung; 
• Even if it is in my bones, it can still be treated;
• At my age, dying of something in the next 10 or 20 years is probable, and I accept that I am not as immortal as I thought I was at 16;
• This is not going to kill me anyway. 

So with all that in mind I then have a choice to make, if II possibly can. I accept that I have the condition, and the only control I have over it is to trust the experts and their machines, and to think wisely about the choices they give me. Next comes my state of mind. Do I feel sorry for myself, wish it wasn't the case, wish I had a time machine... Make people do things for me that I could do myself, because now I deserve it? Or do I accept this as something that happens to people, and resolve to myself to do as much as I can with everything that I still have? The fact is, I've got a lot. The PCa has no symptoms. The ADT makes me tired, but it came on at a pace that helped me get used to it, and the wait is almost over for radiotherapy. The fatigue is a small price to pay from what I am getting in return. 

If I shorten all of that into one sentence: There is nothing I can do about prostate cancer, but anxiety and self-pity are an added burden I would rather not carry, because it will get in the way of living my life.

I went for my biopsy result, expect to be told I had cancer. It was not a shock. The nurse outlined the treatment options, and I had already looked them up and didn't need any persuasion with my choice. I told my employer of the disruption to my work over the coming months based on fatigue and the radiotherapy & more fatigue after that. The prediction was reasonably accurate and my employer's been very accommodating.

I've also taken up creative writing, as a way of keeping family informed of progress, and to make light of the elements of the experience, which or lift the spirit or just make you laugh. It is cathartic and it keeps my mind occupied. So does my work. I am always seeking things to keep my mind busy...

Don't be any more scared than you need to motivate yourself into accepting the things you can't control, controlling the things you can't accept, and finding the wisdom to know the difference. 

(Yes, I did pinch that bit from the serenity prayer) 

I wish you all the best for the next stage in your journey <3

Lemsip

Well said Lemsip.

Thank you.

KrisPy

Hi there thank u for contacting me on this forum, Iam nw to all this thing . I’ve had a PSA test , and Prostrate surgery , which I found very frightening. Results came bk , showing Cancer sell, nw awaiting my biopsy results. Any help would be greatly appreciated. 

Hello Mweb1998 

Did you mean to put Prostate Biopsy and not 

Mweb1998 said:

and Prostrate surgery

They are 2 different things.

Once you have your PSA Results and your Biopsy results we will be able to help, at this time it's just a waiting game - but remember prostate cancer is usually slow growing and very treatable.

Best wishes - Brian.