Need support please.

Hi Suecol . Good to know you are currently clear. I think the way you are feeling is normal and many of us will be aware of the worry of it recurring. I am ten years down the line and still think twice about any random ache or pain, but it is not on my mind all the time. The longer you go the easier it gets. There is a paper By a Dr Peter Harvey, "After treatment finishes, then what?" . It is a bit of a long read but worth it and explains why we feel this way. Best wishes.

Can't really help much and sorry to hear your going through this, but I've learnt or decided to take things as they come and try not to worry about what ifs. 

All the time you have clear results take that as a win, no one can say for sure whether it will come back or not, it's a bit of a lottery I'm afraid and not a good one.

But take solace in the fact you are currently clear and hope that it stays that way for a long time. 

Can't really offer any better advice than that tbh. 

But I do find worrying about it or what it's doesn't help me so I just try to only worry when there is something to worry about aka something has been found etc. But everyone has wobbles now and again it's always there on your mind we all know that. People don't realise how it seems to always be there in your mind when you give them good news it's like oh you'll be fine, but they are dealing with the anguish and thoughts and dealing with things that have happened like we are. 

Hi Suecol, 

Am not sure if yours is similar to my diagnosis? If you read my bio you will see my story so far

Annie 

I'm not sure Annie,   all I know is mine in transitional cell cancer.  Told rare and aggressive.   That's  why I was hoping to connect with someone else with TCC.  I just can't find info or anybody with the same.  But thank you so much.

Hi Suecol, 

mine was TCC also, and yes it is rare, mine was in my kidney and had spread to the ureter, I had chemo followed by surgery. There is no real data to compare due to its rarity unfortunately, but I am doing well two years post op 

Annie x

Strange.  But mine was encased in the kidney,  I was told chemo would not work,  too many health problems to operate so will try radiotherapy.   This kidney has not worked for quite a long time,  very small and useless but still there.  If it returns there seems to be no treatment so I worry.   I'm so glad to hear your treatment  was a success.  I hope I will be lucky too,  I had scan in February  which was clear and next one is August.  Nerves are starting already.  Thank you so much for your reply. X

Hiya, it may be because of issues with your kidney chemo would not work? But good news you are currently clear, long may it remain so. I also have a scan booked for August along with a cystoscopy, the nervousness never really goes away, but the longer the clear spells go on the more positive I become

Annie xx

Thoughtful and reflective article Rily. Several points raised by Dr Harvey really hit home. Garviv