Any young people out there with bladder cancer? under age 25?

Bladder cancer

For people affected by bladder cancer to get together, ask questions, share experiences and support each other

Any young people out there with bladder cancer? under age 25?

No. of entries: 15 | Posted on 03 Dec 2008 03:54

Any young people out there with bladder cancer? under age 25?

  • I was just wondering if there were any younger people who have experienced having bladder cancer. I'm 23 years old and have had a tumour removed in March and it just recently reoccurred. I just find it so messed up that the majority of the people affect with this type of cancer are males, over the age of 50. Everytime I ask my doctor what can i do to stop this from reoccurring she tells me that I'm already doing everything i can as I dont smoke etc. But I've never had a cigarette in my life! So how can not doing what i've already not been doing be a preventative measure??? I'm just so frustrated. At least if i knew that this was happening due to genetics I would know there is nothing to I can do. But not knowing why is just killing me.

    Anyone want to share their feels?

    Thanks. just needed to vent.
  • Afraid I'm neither, any more at least. Mine isn't bladder cancer, but I was first diagnosed at 24, now 27. Just wanted to say that I think havig cancer as a young adult throws up a lot of different issues to those who have it a little later, which often seem to slip off the general radar. I personally find it difficult to identify people who seem appropriate to sound off at these about, - either people are older so you sound like you're envying them or lecturing them on how they should have lived their life, or people are your own kind of age and feel guilty for what they've got that you want! So if any young people fancy a ranton this theme - or any other of course - please message me! As for the question of 'why me?' I've never been offered any real answers to that one unfortunately, but then if we knew, what could we really do with the information after the event? If we'd been told to avoid something 'just in case' we probably wouldn't have done. I now have lung cancer, my dad and my best friend have seen the affects on me as well as visiting me in hospital and seeing everyone else, yet they smoke as heavily as ever! (I never smoked by the way.) I've stopped dwelling on 'why' half as much as I used to, though obviously it still gets me on bad days. Hopefully it'll stop bugging you too in the end. XX
  • Hello

    I'm not under 25 but I am a female and I first found I had bladder cancer when I was 50.

    I can't say that I understand how you feel as a younger person but if I can help in any way I will try - just ask.

    One of the things I tried to do was to get myself as fit as I could and I am sure it helped.

    BJ
  • Hi... I was diagnosed last yr with bladder cancer and being female and at the time 40 thought "why me" as i'm told it usually men over sixty.. I have no idea...I have always been a bit of a health freak ie went to the gym 4 times a week..ate well and generally looked after myself.... there is also no history in the family so i guess its the way of the world unfortunatly.. i wish you well in your request and will be watching your replys as any info is good... keep your chin up and i wish u well x
  • Im not as young as you (im 46) but i am female . Like you ive never smoked ever.No one in the house smokes.The only thing my dr can put it down to is the fact that i had persistent cystitis for about 2 years.When i was diagnosed(bladder cancer) it was like being hit with a hammer.It really threw me .Sort of made me feel as if i was outside looking in a very strange and numb feeling.That was last june ive had a few cystoscopies since then where they burn the bits off.But this time im told its a little deeper.Not muscular but enough to give me a 6 week course of bcg which worries me.What worries me more is if it doesnt work what then?. Im worried ,im scared to be honest im sort of spaced but at the same time hopeful
  • I am a 21 year old female and I just found out that I had the first stages of bladder cancer. I was having symptoms that my doctor thought were related to a urinary infection for over a year until I was referred to a urologist. They found a tumour removed it just last month and I'll have to be closely watched with routine cystoscopies and CT scans every 3 months for at least 2 years, then yearly for the rest of my life. I'll be going in for my first CT scan this week to see if my kidneys have been affected as well.

    I can completely understand your frustration. My urologist has absolutely no idea how someone my age could have developed bladder cancer. I do not smoke or do drugs and I have never been exposed to any toxins that could have caused the tumour. I am considered her youngest case, as before it was a 27 year old female.

    I also have no idea if there is any way to prevent it from coming back. I haven't been given any suggestions, and all they can do is just keep an eye on me to see if there is any regrown.
  • I'm right there with ya brother. Summer '07 I was 21 and around July I had a cancerous tumor removed from my bladder and so far I have had no recurrences. My urologist performed cystoscopys on me every three months for a year and now I have them every 6 months. I recently moved to a different state from my urologist and now i need to find a new one... dang I liked my urologist he was a cool guy.

    I also didn't smoke cigarettes BUT from the time I was 16 up until I was diagnosed I was a heavy marijuana smoker (so if you do burn please please stop for your physical health). I can say with lots of confidence that along with family history/genetic predisposition that it was the carcinogens in the marijuana smoke that caused my cancer. Your symptoms seem much more mysterious as you are not a smoker. I hope and pray that your health improves until cancer is no longer in your body.

    - Josh
  • I'm 33 male , living in Dubai , i was diagnosed in April 2009 and i had surgery and they removed the tumor that i have superfcial bladder cancer T1a G3 .i had six dozes of BCG .
    i was smoking but not heavy smoker and i was drinking alot of Pepsi and Coffee but i gave up all of these things , also i was working under high pressure and stress but i quit also from that job.
    the beautiful thing about cancer is making you thinking about how things must go . the priority wise !! be positive and thank god that u are having kind of cancer curable and removable !! what shall you do if it was other kind of cancer which is not curable at all !! and even in your case what would you do if it went very aggressive and went down to the bladder muscles .!
    you have to be positive my dear and good luck .. it's only matter of follow up
  • Hi I am 39 and female, non-smoker, non-occupational risk etc. Only thing I do have as a possible 'reason' is a history of UTIs and that I self-cath becuase can't void (ie have retention and can't push out wee). My cancer is stage 3b and is in a lymph node. Howver did it get that far??! I am having chemo and then bladder removal. Removal only way to stop cancer coming back in bladder but poss come back elsewhere due to cells travelling. I have had my children so the associated womb removal is OK for me. If you are female that is another worry. One thing I am trying to do is stay calm and positive and keep things in perspective - not easy but I remember I have a life and need to live it. I don't know if I shall be cured but what I do know is I am not dead yet! Have you tried talking to a counsellor? Might help to just vocalise your feelings and you may get some techniques to help you stay positive and fit this 'worry' in to your life rather than allow it to take over. Keep fit and healthy in body too then if it does come back you can cope with the investigations and treatments.
    Best wishes.
  • Hi 'the young one'. I was diagnosed with grade 1 superficial bladder cancer in April 2009. Like you, I've never smoked or been around smokers, keep fit and healthy, and the doctors cant exaplin why. Its horribly frustrating and doesnt help that when you tell people you have cancer they look at you like you are dead. I had the tumour out in April 09, and going back for another cytoscopy in Sept to see if it has grown back. Lots of love xxx
  • I'm a private person and not a lot of people know that I had bladder cancer. It was 2000, I was 19 and went for my physical which was required to enter into University for the fall semester. The Doctor told me that my urine sample was abnormal and asked me if I had symptoms of a UTI and I didn't. So she sent me to get an ultrasound and they found a small tumor in my bladder. I was then sent to a urologist who was phenominal/supportive and just shocked that I got this so young and was his youngest client. Usually it occurs in men and over 50. I never smoked, health freak, and didn't work with chemicals, didn't eat a ton of fried meat/foods so it puzzled everyone how I got it. No history of cancer in my family so it just baffled everyone. I was utterly emotional, the whole why me, I wanted answers but there wasn't any answer as to how I got it and I'll probably never know why. In any case, I had an operation done to remove the tumor and then went for CTs frequently for 2 years and was clean, no signs of regrowth or such. There was an issue with my parents health insurance and lost the relationship with the urologist so I picked a different urologist who happened to be two floors above and had my own health insurance.

    I won't forget his reaction, what on earth is this young girl doing here and how does she know what a CT is? And how is just so educated in bladder cancer? After telling him the story, he obtained my old charts and performed the CT and again, clean as a whistle. When I asked him how did I get this in the first place, he didn't have an answer. I wish there was an answer so I can prevent it. But I am lucky and thankful that it was detected early. If it wasn't for the physical, I don't think I'd be where I am today. Its been 9 years and no signs of it reoccuring and hope it stays that way because the thing that terrifies me, is that if it does come back it jumps to stage 2. I am asymptomatic which is scary, I had and have no signs of the discomfort, burning, urge to urinate. I go every January for my annual CT and having the CT shoved up my uretha isn't pleasant so to make everyone comfortable and myself I say HO HO HO its something I've been saying since 19 doing these CTs so it works.

    In any case, think positive, live life to the fullest, don't let this overwhelm and consume your life. And sure it looms in the back of your mind but look past it as I do. I do keep myself with a sporadic research of bladder cancer but I don't look it up all the time. I'm happy to stumble upon this forum and wish I had this when I was 19, it would have really helped me. I eat healthy, work out, have a stress-free job but I also surround myself around positivity...you'll find your philosophy how to combat this both mentally and physically. I also confided not only my parents/sister but also my best friend and two friends that know what I had and always let them know about January with the results, this close knit support helps me a lot. I didn't want to spread the word what I had or else I have a ton of people feel bad which I do not want at all. This is a little different, I was holding off to post a reply but I wanted to shed some light to others who may be going through the same whether you're 19 or 60+ and just sharing my experience is a positive approach. So I thank you for posting this thread. I'm sure by venting this frustration, that it made you feel somewhat better but also know that you are not the only one and that you have a support group.
  • 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.

    Catarina

  • 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