too young for bladder cancer

loveclare
loveclare Member Posts: 1
edited March 2014 in Bladder Cancer #1
I was first diagnosed when I was 31 and pregnant with my first child. I was never a smoker and am not in any other risk group. There is no bladder cancer in my family. The hardest thing for me to accept is WHY? I had a tumor removed while I was 20 weeks pregnant and recently had 2 more growths removed after they were found during a routine cystoscopy. I am scared and sad and angry, and don't know where to go because I can't find anyone who really understands. Even my doctor, who is the best in my opinion, says I am a very unique case. Is there anyone out there who can relate to me? I don't want having cancer to ruin my life while I am living it.
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Comments

  • Canadoll
    Canadoll Member Posts: 7
    #2
    Hi,we spoke the other day. I hope you are doing well. I found a website with a very similar story to yours. I thought you might want to see it. Here is the address: http://blcwebcafe.org/stories/young_tas.asp
    All the best, Sharyl
  • Military
    Military Member Posts: 31
    #3
    The University of Southern California has an ongoing study to track a specific gene that has potential for mutating. If this is the case, it may explain why those that have never smoked have bladder cancer. You should seek help from medical centers that have extensive experience in these matters. There has been numerous advances in this field of medicine and at your age your future should look bright.
  • CynthiaA
    CynthiaA Member Posts: 20
    #4
    I was dx'd with bladder ca in 1996 and have been treated for it ever since. I still have to have a cysto every six mos for the rest of my. I look at my bladder ca as a nuisance, as would be diabetes, or rheumatoid arthritis. It's just something that came along with my lousey gene pool. I've had 6 diff primary site ca's with no mets over the past 16 yrs. What I'm trying to say is, 'welcome to your new life.' I often hear people talk about how they want get back to normal...well, surprise, this is your new life as a cancer survivor. This might sound cold...but, didn't anybody ever tell you that you'd never be the same? I remember when one of my Drs said that to me in 1990 and it made me furious. It finally sunk in after a while and I realized that he wasn't being cruel...just honest. My new life over the past 16 yrs has been a great gift, and I know that I will never be the same. There's no going back. If you would like to talk, you can em me here on CSN under my sign in name...Cynthia A
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #5
    What kind of bladder cancer do you have? TCC. RCC, CCC? What grade is your cancer? What kind of follow up are you having?
  • eyes2
    eyes2 Member Posts: 13
    #6
    Hi
    I'm not as young as you,but I'm 52 but I never smoked either. I was diagnosed within 3 months with endometrial cancer and bladder cancer. I had 4 transurethral bladder tumor resections and BCG treatments but the tumors kept growing back and the last one was invading the bladder wall. Well I guess I'm writing to tell you that I did have to have my bladder removed in 2/04 but they made me a neo bladder you urinate through your urethra there is nothing on your abdomin except a scar. I thought at the time my world came to an end but it didn't I have adjusted to my new way of urinating, I also needed a bladder sling and I have to self cather. I'm alive enjoying my triplet grandchildren and functioning in society at this point I'm cancer free and the world did not come to an end. Pleae keep up with your scopes and if you ever need to know more let me know.
  • lionfood
    lionfood Member Posts: 2
    #7
    31 and pregnant must have been pretty scary. I also had no bladder cancer in my family....I was just diagnosed in January, i'm 21. My tumor was classified as high grade papillary urothelial carcinoma. I underwent a TUR and did 6 weeks of BCG therapy afterwards. Have you undergone BCG therapy? I hear its very helpful in preventing reoccurences. How was your cancer classified?
  • crazydancer
    crazydancer Member Posts: 3
    #8
    Hi I'm new here, but I could really relate to the title of your post. I am 18, and I was diagnosed in April with TCC. I know exactly what you mean about asking why. This kind of thing only happened to old men...i thought! (haha) I got so sick of going to the hospital and people making comments about how young I was and asking me all these questions. I thought about printing cards out so that I didn't have to keep saying yes people have told me how rare it is for someone my age blah blah blah.... But i've found that things are pretty good. I am a dancer, and I just schedule my cystos around my performances and if they find anything they just cut it out, I do BCG, and that's the end of that for 6 months. I find it pretty manageable, but at first I was so frusterated. I had a tumor the size of a softball removed from my bladder, and I had to have a nef tube in my right kidney, and I felt so restricted. I felt unproductive and pissed off, but I've learned to manage things and look on the bright side...I mean now i have a reason to ride in those motorized chairs in the store!!! So I guess I'm just saying, I know how you feel. I hope to get to know you better!
    Hope and Strength,
    Karen
  • alex1
    alex1 Member Posts: 1
    #9
    I was also diagnosed at 31 yrs old with stage IIIb bladder squamous cell carcinoma. I was also told I was a unique case. I had a partial cystecotmy, lymph nodes removed, chemo and radiation. Now a 1 year survivor and making my way in my new life. I would really like to talk to any others willing to share their insights and experiences.
  • najon88
    najon88 Member Posts: 1
    #10
    loveclare-You are not alone- I was 25 and 3months pregnant with my first child when during a routine sonogram, my first sonogram, they discovered I had a tumor on my bladder. I too had surgery during the pregnancy and once after the pregnancy. I too have days that I feel no one could possibly relate to me and what now? I am completly frustrated by the lack of info available to younger people, I am now 34 but at the time of my diagnosis, according to all the research I could fine, I should have been elderly and a man???? I just hope that something finally gives, so that we can atleast be sure that our childrens worries will be less. Another website that is amazing and I am passionate about is pregnant with cancer. I hope this finds you well and would love to talk more.
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • gigivp22
    gigivp22 Member Posts: 2
    #12
    I was diagnosed two years ago when I was 25. I was in pain for almost a whole year before I found out. I would bleed and dread going to pee because it hurt so bad. My primary care didn't think anything was wrong with me until I finally went to the emergency room. I had a CT Scan and suddenly nurses started hugging me until a doctor finally told me that I had a massive tumor taking up 3/4 of my bladder. I found the best doctor in boston and a week later, I had surgery that lasted around 8 hours. My doctor said that you usually don't have symptoms and mine saved my life. I had stage one cancer and since then I've been getting cystoscopys every 3-4 months. At the beginning of this year he saw a spot and lasered it off and said there wasn't anything to worry about. Well now I just found out again that they are starting to grow back, not spots, but tumors. I am now 27 and I'm going for my second surgery. This time around he is going to remove the tumors and then coat my bladder with kemo. Hopefully this will help me go longer than two years. I just wish I could have more answers to all of this. Is it something we are eating? Is it the fumes from my paint? What, what is it? Luckily I have a great support team. I have a wonderful family and friends.
  • mrsmichelle
    mrsmichelle Member Posts: 1
    #13
    gigivp22 said:

    I was diagnosed two years ago when I was 25. I was in pain for almost a whole year before I found out. I would bleed and dread going to pee because it hurt so bad. My primary care didn't think anything was wrong with me until I finally went to the emergency room. I had a CT Scan and suddenly nurses started hugging me until a doctor finally told me that I had a massive tumor taking up 3/4 of my bladder. I found the best doctor in boston and a week later, I had surgery that lasted around 8 hours. My doctor said that you usually don't have symptoms and mine saved my life. I had stage one cancer and since then I've been getting cystoscopys every 3-4 months. At the beginning of this year he saw a spot and lasered it off and said there wasn't anything to worry about. Well now I just found out again that they are starting to grow back, not spots, but tumors. I am now 27 and I'm going for my second surgery. This time around he is going to remove the tumors and then coat my bladder with kemo. Hopefully this will help me go longer than two years. I just wish I could have more answers to all of this. Is it something we are eating? Is it the fumes from my paint? What, what is it? Luckily I have a great support team. I have a wonderful family and friends.

    Hi,
    I had a TURBT in
    Hi,

    I had a TURBT in November to remove two tumours from my bladder. The doctors found them after they'd sent me for an ultrasound to find out why, despite trying for a year, I wasn't getting pregnant. Obviously, it wasn't what we were expecting at all!! The doctors all asked me if I smoked, which unfortunately I have done at different stages in my life, on and off. I didn't fit into the 'category' of bladder cancer sufferers despite the fact that I used to smoke (apparently, it would have to be over 15 cigarettes a day over many years, which I was nowhere near). I'd had severe amounts of blood in my urine since April 07 until around Dec 08 but then nothing throughout all of 2009. Luckily, I'd moved home and had a new doctor as the previous ones had lost my sample results twice and hadn't thought to refer me on to the hospital to find out what was going on. I actually went to the doctors because of a chronic stomach ache I kept getting, which no one has yet confirmed whether that was anything to do with the cancer or not. It's all pretty confusing isn't it? I was asked if I'd worked with chemicals, dyes etc etc - the only dye I ever went near was hair dye and apparently it's nothing at all to do with that. I also asked if it was anything I'd eaten, drunk, did I not drink enough water????? All answers were that those things were nothing to do with it. So I'm non the wiser either I suppose - I'm 36 years old and otherwise healthy. I've got my first cystoscopy in March, which apparently is the all important one. My cancer was Grade 2 Ta. I had chemo the day after my TURBT - having this apparently reduces the likelihood of it returning, at least for a longer period of time than it would have done with no chemo. I don't know if you'll find more info than you already have on this site :- http://www.uroweb.org/fileadmin/user_upload/Guidelines/05 TaT1 Bladder Cancer.pdf
    I believe many people live their whole lives with cancer and die with it, rather than from it. It doesn't make it any less scarey initially though does it?
    Your post is from December so I'm presuming you've already had your second surgery, I really hope it all went ok for you. Family and friends have definitely got me through this and I'm sure yours will too.
    Kind Regards and best wishes xxxx
  • tundra_07
    tundra_07 Member Posts: 1
    #14
    mrsmichelle said:

    Hi,
    I had a TURBT in
    Hi,

    I had a TURBT in November to remove two tumours from my bladder. The doctors found them after they'd sent me for an ultrasound to find out why, despite trying for a year, I wasn't getting pregnant. Obviously, it wasn't what we were expecting at all!! The doctors all asked me if I smoked, which unfortunately I have done at different stages in my life, on and off. I didn't fit into the 'category' of bladder cancer sufferers despite the fact that I used to smoke (apparently, it would have to be over 15 cigarettes a day over many years, which I was nowhere near). I'd had severe amounts of blood in my urine since April 07 until around Dec 08 but then nothing throughout all of 2009. Luckily, I'd moved home and had a new doctor as the previous ones had lost my sample results twice and hadn't thought to refer me on to the hospital to find out what was going on. I actually went to the doctors because of a chronic stomach ache I kept getting, which no one has yet confirmed whether that was anything to do with the cancer or not. It's all pretty confusing isn't it? I was asked if I'd worked with chemicals, dyes etc etc - the only dye I ever went near was hair dye and apparently it's nothing at all to do with that. I also asked if it was anything I'd eaten, drunk, did I not drink enough water????? All answers were that those things were nothing to do with it. So I'm non the wiser either I suppose - I'm 36 years old and otherwise healthy. I've got my first cystoscopy in March, which apparently is the all important one. My cancer was Grade 2 Ta. I had chemo the day after my TURBT - having this apparently reduces the likelihood of it returning, at least for a longer period of time than it would have done with no chemo. I don't know if you'll find more info than you already have on this site :- http://www.uroweb.org/fileadmin/user_upload/Guidelines/05 TaT1 Bladder Cancer.pdf
    I believe many people live their whole lives with cancer and die with it, rather than from it. It doesn't make it any less scarey initially though does it?
    Your post is from December so I'm presuming you've already had your second surgery, I really hope it all went ok for you. Family and friends have definitely got me through this and I'm sure yours will too.
    Kind Regards and best wishes xxxx

    young bladder cancer patients
    hi!
    A year ago,at the age of 26,i was diagnosed w/ bladder CA (TCCA type).. i didn't know how to react, it was really something i never thought i would have..it felt unreal..and being a doctor, i knew it was really rare for my age and gender, and i never even have smoked my entire life.. my urologist did only a cysto-TURBT..accdg to him no chemo/bcg was needed since it was only superficial, and i was glad to hear that.. though my other fellow doctors thought i should've had the chemo, i trusted him, and i also read that resection was enough in superficial tumors..but then again,i was still doubtful about the findings..was it really cancer?..i kept saying to myself maybe they just made a mistake about the biopsy..
    when i had my follow-up cystoscopy 3 months after, it was clear and no tumors were found... i became less worried and thought that probably this was all indeed just a mistake since i never fit any of the risk factors..i was probably in denial back then..i wasn't thinking like a doctor at all..
    i became less compliant with my next follow up (as they say, doctors are usually the most difficult of patients), and instead of having my follow-up cysto 6 months after, i failed to return until it was 10 months later since my last procedure..and so my urologist scheduled a repeat cystoscopy last week..we were both confident that it would still be negative, and agreed that my procedures would be less frequent thereafter if ever it was indeed negative..i was even thinking of not having another procedure at all after that.. all i can think about was that it was all just a big mistake..
    but to both our disappointment, he found a new growth at a different site from my first one.. that's when it really struck me that this was really for real..my friends and family have been supportive all through out..but i still can't help but feel scared.. i'm still awaiting biopsy results, but now i'm preparing myself for a possible chemo and a lifetime routine cystoscopy, ..i've been researching about bladder ca in the young, and i was actually really glad to have found this thread..it feels nice to actually read from stories that i could actually relate to..i don't know anyone else from here who's a young, non-smoking female w/ the same condition as i have..i've seen patients w/ bladder ca and they were all male in their late 70s-80s..and every time i wait outside my uro's clinic, i'm surrounded by elderly men..it felt like i was misplaced, just like my bladder cancer..misplaced...
    tomorrow i will be getting my biopsy results and will be awaiting my uro's decision for my management..all i can do now is pray....thanks for reading..it felt a little bit better airing this out to people who could relate to what i'm going through..maybe i would be able to sleep after this..it's 5am here..the sleeping pill i took 3 hrs ago didn't work..lots of thoughts in my head...
    would love to hear updates from you guys too :) God bless to all of you..
  • justmejulie
    justmejulie Member Posts: 1
    #15
    Lynch Syndrome
    Have you been checked for Lynch Syndrome? My husband also had bladder cancer in his early 40's They also said he was young until 4 years later he came down with colon cancer and did a blood test and founf that he had Lynch Syndrome. And it can cause a lot of different cancers at a early age like bladder, colon, stomach, lung, liver, brain, and skin cancer and for females its overies also. He was tested and had a positive result so we had a 50/50 chance of our kids having it too. 2 have been tested and the both have the gene.

    Good Luck
    Julie
  • loveslife_24
    loveslife_24 Member Posts: 8
    #16
    pregnant while having treatment.
    hi sorry to hear about ur troubles. i am 24yrs old and have recently been told that i have abnormal cells on my bladder which are in the first stages of bladder cancer. i was given the b.c.g treatment for 6 weeks but was then told afterwards that this had not worked. i then got referred to a specialist oncologist in liecester (U.K). he told me that he wanted me to have a c.t scan and a m.r.i scan. i have just found out im 5 weeks pregnant and i was not allowed to have my scan done. now my specialist wants to see me but he has asked me to take my mum along... i cant help thinking hes gonna say that its not safe for me to continue with the pregnancy but ive seen that you had treatment while pregnant. were the doctors ok about you continuing with treatment while pregnant and did u have any problems. i dont know what the specialist is gonna say but do u think i should ask for a second opinion?? i hope to get in touch soon. and i hope evrything is ok for you. x
  • loveslife_24
    loveslife_24 Member Posts: 8
    #17
    pregnant while having treatment.
    hi sorry to hear about ur troubles. i am 24yrs old and have recently been told that i have abnormal cells on my bladder which are in the first stages of bladder cancer. i was given the b.c.g treatment for 6 weeks but was then told afterwards that this had not worked. i then got referred to a specialist oncologist in liecester (U.K). he told me that he wanted me to have a c.t scan and a m.r.i scan. i have just found out im 5 weeks pregnant and i was not allowed to have my scan done. now my specialist wants to see me but he has asked me to take my mum along... i cant help thinking hes gonna say that its not safe for me to continue with the pregnancy but ive seen that you had treatment while pregnant. were the doctors ok about you continuing with treatment while pregnant and did u have any problems. i dont know what the specialist is gonna say but do u think i should ask for a second opinion?? i hope to get in touch soon. and i hope evrything is ok for you. x
  • loveslife_24
    loveslife_24 Member Posts: 8
    #18
    pregnant while having treatment.
    hi sorry to hear about ur troubles. i am 24yrs old and have recently been told that i have abnormal cells on my bladder which are in the first stages of bladder cancer. i was given the b.c.g treatment for 6 weeks but was then told afterwards that this had not worked. i then got referred to a specialist oncologist in liecester (U.K). he told me that he wanted me to have a c.t scan and a m.r.i scan. i have just found out im 5 weeks pregnant and i was not allowed to have my scan done. now my specialist wants to see me but he has asked me to take my mum along... i cant help thinking hes gonna say that its not safe for me to continue with the pregnancy but ive seen that you had treatment while pregnant. were the doctors ok about you continuing with treatment while pregnant and did u have any problems. i dont know what the specialist is gonna say but do u think i should ask for a second opinion?? i hope to get in touch soon. and i hope evrything is ok for you. x
  • loveslife_24
    loveslife_24 Member Posts: 8
    #19
    pregnant while having treatment.
    hi sorry to hear about ur troubles. i am 24yrs old and have recently been told that i have abnormal cells on my bladder which are in the first stages of bladder cancer. i was given the b.c.g treatment for 6 weeks but was then told afterwards that this had not worked. i then got referred to a specialist oncologist in liecester (U.K). he told me that he wanted me to have a c.t scan and a m.r.i scan. i have just found out im 5 weeks pregnant and i was not allowed to have my scan done. now my specialist wants to see me but he has asked me to take my mum along... i cant help thinking hes gonna say that its not safe for me to continue with the pregnancy but ive seen that you had treatment while pregnant. were the doctors ok about you continuing with treatment while pregnant and did u have any problems. i dont know what the specialist is gonna say but do u think i should ask for a second opinion?? i hope to get in touch soon. and i hope evrything is ok for you. x
  • loveslife_24
    loveslife_24 Member Posts: 8
    #20
    pregnant while having treatment.
    hi sorry to hear about ur troubles. i am 24yrs old and have recently been told that i have abnormal cells on my bladder which are in the first stages of bladder cancer. i was given the b.c.g treatment for 6 weeks but was then told afterwards that this had not worked. i then got referred to a specialist oncologist in liecester (U.K). he told me that he wanted me to have a c.t scan and a m.r.i scan. i have just found out im 5 weeks pregnant and i was not allowed to have my scan done. now my specialist wants to see me but he has asked me to take my mum along... i cant help thinking hes gonna say that its not safe for me to continue with the pregnancy but ive seen that you had treatment while pregnant. were the doctors ok about you continuing with treatment while pregnant and did u have any problems. i dont know what the specialist is gonna say but do u think i should ask for a second opinion?? i hope to get in touch soon. and i hope evrything is ok for you. x
  • loveslife_24
    loveslife_24 Member Posts: 8
    #21
    pregnant while having treatment.
    hi sorry to hear about ur troubles. i am 24yrs old and have recently been told that i have abnormal cells on my bladder which are in the first stages of bladder cancer. i was given the b.c.g treatment for 6 weeks but was then told afterwards that this had not worked. i then got referred to a specialist oncologist in liecester (U.K). he told me that he wanted me to have a c.t scan and a m.r.i scan. i have just found out im 5 weeks pregnant and i was not allowed to have my scan done. now my specialist wants to see me but he has asked me to take my mum along... i cant help thinking hes gonna say that its not safe for me to continue with the pregnancy but ive seen that you had treatment while pregnant. were the doctors ok about you continuing with treatment while pregnant and did u have any problems. i dont know what the specialist is gonna say but do u think i should ask for a second opinion?? i hope to get in touch soon. and i hope evrything is ok for you. x

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