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Just so you know, I too was diagnosed at 23 years old I am now 49.
I had continoues reoccurrences until I was about 35 then I moved to Canada and they gave me chemotherapy (BCG) which had just recently been developed and have been completly clear since then, still go in for 6 month check ups.
Good luck with yours I'm sure you will be fine.
It's good to hear of people who have survived so long after being diagnosed, although horrid to be so young to start on this road. Even at 57, I'm often the only female at clinics & I think the other patients mostly look older than me (perhaps I should look closer at the mirror!).
Hi there the young one!
I'm a girl, now 38 and although 15 years older than you I can relate to the many things you say. In my heart I am only 19 anyway (and feel 19 ;-)). I was diagnosed when I was 30 (grade 1, stage 1 single large tumour) and by the size of my tumour was told I had been living with it for a good few years without knowing (shock horror). I had no symptons at all!!!! The symptons (very very evident bleeding with clots) came after a trip to Patagonia in Argentina for trekking and climbing. I did a harduous 2 day trek in Patagonia and wonder if that helped to get symptons out. I am glad the symptons came. Despite all that was lucky that the tumour was low grade and was superficial. A year later I was back for another TURBT for a tiny tiny tumour. From 2005 until now had nothing. 6 years of freedom and thought: 4 more years and goodbye cystoscopies. Unfortunately not so, as had a reoccurrence December and am waiting for TURBT.
Sometimes I get really frustrated with the hospital trying to get a date out of them for appointments and ops and trying to make them understand that I have work, plans, places to go and things to do (I still travel to Argentina when I can for trekking). So I can sympathise. And they always stare at me blankly as ask who old I am as they cannot yet believe that I have something that it rare in persons under 40. But I guess the older patients also have things to do and places to go and I really do not wish to offend anyones feelings. I too don't know where my tumour came from. We do have lots of cancers in the family though (although noone has had bladder cancer so far - I like to innovate!). I had the same questions going round my head as well and researched the internet up and down, even reading oncology journals. There are somethings that medicine just can't yet explain. I too never smoked (really can't stand it), never did any drugs of any kind, hardly ever drink, never worked with chemicals and paints, never dyed my hair (another one to look out for apparently) or swam in the Nile (there is a bacteria that has also been linked to bladder cancer). I even read that some chemicals in swimming pools were linked in a study and thought, OMG I swam for 10 years since age 12!! Nooo.... I could drive myself nuts trying to find a cause, but am inclined to accept that medicine might not yet have an answer for this one. But I think that it is a good thing and it is very positive to keep looking after yourself and live life as normally as you can. I try to do that as I believe that this will give me the best chance. It's also good to speak to the online users who are older than us, I have benefitted a great deal from their life experience and pearls of wisdom. And realised that it doesn't matter what age you are the feelings of fear etc are still the same. Life really throws unexpected challenges and something that can break us also can makes us. I feel I am a lot stronger and focused in life for having the illness (no, I don't like having it and would rather not having, don't get me wrong). It kind of gives you the sense that life is to be lived now, not later. And having a diagnosis can be a lucky thing as some people are really unlucky and don't get one until it's too late.
So what are your life plans?
Sorry for the long winded answer. I do hope this helps. I really wish you the very best and am here to hear you whenever you need, just like all of us who are part of the online community.
So good to hear stories with positive outcomes! You've clocked 26 years so far - that is billiant and I hope to be as lucky as you. Am prepared to go cystoscopies and ops from time to time but just pray the tumour doesn't jump grades or stages. If it does will deal with that as and when. All the best to you
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