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Diagnosed aged 35
I would love to hear from any women who have been diagnosed with bladder cancer at a young age. After what has felt like an interminably long journey (diagnosis of stage 3 tumour July 06, radical cystectomy, Hautmann bladder, almost at end of 5/6 cycles of chemo) I am only now really trying to come to terms with it all: recurrence, hypercontinence, being infertile, sexuality issues. I have been so positive in dealing with all the physical aspects up until now I think my head & heart need some support! It doesn’t help that there is so little information, public awareness or “endorsement” for this type of cancer as if it is supposed to only affect the elderly. It is all rather overwhelming.
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22 Replies
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Hello I just signed up for this site today but I was also diagnosed at 37 with stage 4 bladder cancer that had spread into my lymph nodes. That was April 2012. To say the least I was terrified at the news after being seen by 2 different urologists that didn’t catch my cancer because of my young age. I repeatedly went to the ER with extreme pain blood clots and being unable to urinate. They would call my urologist and he would tell them to send me home and make a follow up appt…for some reason he believed my issues came from using drugs which at that time I took absolutely nothing at all!! Finally went to a different hospital and was diagnosed. But after that frustrating ordeal I went immediately through chemo and had bladder removal surgery hysterectomy and effected lymph nodes removed. That was Aug 2014 and I have been blessed to be cancer free since then.I do have a urostomy that took a while to get used to but I have learned to deal with it and just so happy to still be here with my children!
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I know your original post was 7 years ago, But I thought I would share anyway. My first run was at age 24 then again 9 months later. Everything has been okay now the symptoms are back and I am 36. I have no insurance and getting in to see a urologist was easy, he wanted me in the hospital the next morning for a cysto, but the hospital said no, you have no money. It has been a week and I am literally calling everywhere I can find. Best case is still 4-6 weeks before I can possibly get a cysto done.
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I am brand new to the board (this is my first post) and was surprised to see that there really ARE younger women out there that are going through the bladder cancer experience. I am 38 and was diagnosed with very rare squamous cell and transitional cell cancers after my urologist peeked into my bladder and found a huge tumor. Since the diagnosis on 12/18/06 I have had 4 TURBT’s, 4 rounds of chemo and finally the RC with a Studer Pouch on 4/25/07. I experience the same looks in the urologist’s office full of old men but it did score me quick attention and treatment by the Head of the Urology Department at M.D. Anderson. I became one of his few “pet projects”. I have fortunately been declared cancer-free post-op (YEAH!) and am learning to use my neo-bladder. Thanks so much to all of you ladies out there for letting me know I am not as bizarre as I thought!
Christine Springfield
T3/G3 – Squamous Cell/Transitional Cell Carcinomas
RC w/Studer Pouch 4/25/07hi Sarah
Thanks for sharing that. I am relieved it sounds like a relatively straightforward procedure but agree it gets more complicated with more experts getting involved! The latest is after an MRI yesterday is that it is more likely to be an ovarian cyst…my surgeon was prepared to keep my fal. tubes and ovaraies in although the uterus came out and I imagine my body is now rather confused. Will be seeing my gynae this evening. I am just praying I can avoid another op, particularly a hysterectomy.
Hope you are feeling good. It’s uncanny, our RC timetable was identical.
It’s lovely to “meet you”. I am from the UK too but have had all my treatment in Germany where I live.
Kate
Hi Kate
Sorry I haven’t been on the forum for a while and have only just seen your post. I am in the UK , had a neobladder last July and in September was diagnosed with an uninfected lymphocoele, which was drained through the abdomen using ultrasound to guide the radiologist. There was a lot of debate back and forth between my urologist and the radiologist about the best course – the radiologist thought the lymphocoele would be reabsorbed by my body eventually, but the urologist said it was too close to my neobladder to risk leaving it there.
I was very symptomatic though as the lymphocoele was irritating my bowel. Not as rare as all that apparently!
Hope you have now had your scan and all is well.Thanks Wendy – really useful article. I have to have an MRI tomorrow to learn more but my docs said judging by CT scan there are no criteria for tumour activity at least. Phew! Agreed spontaneous resolution sounds ideal. I think spontaneous combustion better reflects my current level of anxiety though!!!!! Kate xx
Hi Kate,
Sorry I didn’t see your post sooner. Also sorry you’re worrying about something like this and have to have a CT instead of enjoying your post treatment peace and forays back into the real world. Funny you say “adult world”, you’re right though, being a ‘patient’ makes us feel dependent and childlike many times.
I have never heard someone who had a lymphocele post op, but I’ve read it’s a common early complication after cystectomy:
“Early complications were identified in
10 patients in group A and five in group B
(Table 3); in group A the most common was
symptomatic lymphocele, in four, of whom
open surgery was used in one and
percutaneous aspiration in the second, and in
two patients the lymphocele resolved
spontaneously. “ http://www.blackwell-synergy.com/doi/pdf/10.1111/j.1464-410X.2005.05507.x
That article was about people over 75 yrs. old.I hope whatever this is “resolves spontaneously” for you!
Keep us posted.
Wendyhello! Somewhat fast forwarding from my last post I have at last finished chemo yippee! Have been really fortunate with very few side-effects apart from hair loss, I feel almost guilty. Boy am I glad Prada has resurrected the turban look, not that I can afford the real thing! I got back to work on Wed which was scary. Suddenly being back in the adult world feels totally overwhelming.
The slight setback I now have…at least I am looking on the bright side saying “slight” is that an ultrasound this morning showed what my uro thinks is lymphocele i.e a sac of fluid next to the new bladder…Help. I did have to have an op after my RC to remove lymph fluid which had become infected and I can’t bear to think I would have to go through that again.
Has anyone experienced this? Would really appreciate any words of comfort. I have a CT scan booked in for Tues to find out what it is exactly.
Lots of love to you all, Kate
gee as an old senile member of the baby boomers…think Christie Brinkley….i’m astounded by how many younger women are being affected with bladder cancer…very discouraging. So much for chemical dyes and smoking……start looking into the chicken feed!…….Testicular cancer is a young mans disease and noone knows why and it seems to me that bladder cancer is quickly becomming a young womans disease also….They are doing some studies now of course with men…where they have found androgen to be a factor……so its in the hormones girls….now if they’ll just study us. Pat
Congratulations, Jenny!! Do some cartwheels… :D
Even though I’ve not yet had a reoccurence, I still look in the toilet every time I pee…now isn’t that kinda sad? I NEVER did before, unless I happened to glance… which is how I found the two instances of gross hematuria (and I mean GROSS.. like peeing Merlot..).
So even though I don’t think like I HAVE cancer, how many people who have never had BC pay such close attention to the toilet bowl? :o S’pose we’ll all get over that someday, too?
Keep up your poke ‘n peeks, pee in any receptacle the docs tell you to, and most of all, live every day to the fullest – you deserve it!
Lauren
TaG1 12/05
3 recurrences
BCG started 9/09
I still do too (feel like a freak), but I think the medical people are getting more used to seeing younger people with this. My GP has changed his referral procedure for people who are ‘too young’ with persistent haematuria, and I am grateful that something good has come out of my unfortunate experience of waiting 18+ months for a diagnosis.
Also, I thought I would share with you some excellent news I received just before Easter – my last poke’n’peek was all clear (yippee!), but even more than that, I finally left (after dancing in the waiting room in my pink dressing gown – I’m not doing my ‘freak’ status any favours am I?) with a feeling that I had ‘had’ cancer, rather than that I was still a patient, and even though my treatment is ongoing and I know things could change again in a matter of months or years, I had waited so long for that feeling, never thinking it would come, I was actually a bit stunned and realised I had forgotten how to be anything other than a cancer patient – it’s really nice to be having a hard time coming to terms with something positive for a change! ;D
Dx 2005 age 32 T1 G2-3, lots of ops & intravesical Rx since, now having BCG as a preventative treatment ‘cos I got the ALL CLEAR just before Easter 07! Yippeeeee!!
Hi there
I was diagnosed two days after my 44th birthday (March 10th 2006). I clearly remember the Doctor when I went for my pre hospital admission he looked shocked and said Ive never seen anyone your age with this we are used to seeing people alot older than you. I didnt quite know which way to take that. A year on and I still feel like a freak of nature when I go backRegards
Sally
Sally
T1B G2
I think maybe next time, I should just stand up every now and then, readjust my “privates” and complain “Yep, the old prostate’s really been botherin’ me…” Then they would probably all have agina attacks, and wind up at the cardiologist’s across the hall! :D
Never had anyone say “nice to see you”, though. The nurses are always kinda touchy around me, again because I think they don’t deal with alot of cancer around there, or alot of women – or maybe they think I’m just gonna freak on them if I see a tumor on the screen (yeah, my guy lets me watch my cystoscopies, which I think is great)!
I have not yet had a recurrence after my initial TURB; and no further treatment except 2 clear cystoscopies, so I’m lucky. I think if it comes back, I will probably force my HMO to send me to a urologist/oncologist, since I don’t feel like this doctor sees a great deal of cancer. He has been very knowledgeable and forthright so far, and told me I had ‘a good kind of cancer, if I had to have any cancer at all’, and his operating room nurses told me that they’d let him operate on them in a heartbeat (and he was NOT within earshot at the time :o)…
Best of luck to you, Jenny. By the way, I think I’m much too young for bladder cancer myself, and i’m 48!!
Lauren
TaG1 12/05
3 recurrences
BCG started 9/09
I know exactly what you mean Lauren! I went for a routine kidney scan last week (as anticipated it was all clear, but it’s lovely to have good news to share with everyone!) and the radiology nurse presumed I’d come to support this poor random man who just happened to turn up at the same time as me! :D She was mortified and I thought it was hilarious! One nice aspect is that ALL the uro nurses know me by name and are always interested in how I’m doing, especially as we got married last year and they spotted our picture in the local paper! The problem is they always say “nice to see you”, when in reality I’m sure we’d all prefer that I was never there in the first place!!
Jenny
xxxx
Dx 2005 age 32 T1 G2-3, lots of ops & intravesical Rx since, now having BCG as a preventative treatment ‘cos I got the ALL CLEAR just before Easter 07! Yippeeeee!!
I don’t know about all y’all, but I get my biggest laugh about all of this when I sit in the waiting room of my urologist (and sometimes, boy do I sit there forever)…. because I am ALWAYS the youngest person in the room, and usually the only woman! I get the weirdest looks from all the little old men.. I’m sure they are wondering exactly how I could have prostate problems, too ;D Now sometimes, the little old ladies accompanied their husbands, and I had one ask me point blank “are you waiting for someone?”…
I get to wait a year for my next “poke and peek”… I won’t miss that waiting room!
Lauren
TaG1, 12/05
TaG1 12/05
3 recurrences
BCG started 9/09Sign In to reply.
