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37 is too young. Look at the waiting rooms!!!!
Hello I also am new to the BC scene and absolutely relieved to have found this web site. I only wish I would have come across it sooner.
Reading Rooster’s message sounded all to familiar.
I also am 37 and live near Vancouver B.C. I am a male, (5’11” 185.), married for the second time, and have two boys 11 and 5. I come from a very close family on both sides and have a tight group of friends. I play hockey year round at least once a week and work in construction mngmnt. I have been diagnosed with BC. Yes, it is much too young.
I noticed blood in my urine. The first time it was almost like a tomato juice colour and then subsided to a tea colour before really looking mostly clear. This lasted about 48 hrs. I had cramping at times intense but I don’t recall both symptoms occuring over the same time period.
I gave a urine sample and was sent for an ultra sound of my abdomen.
I new something was wrong when the tech asked me how old I was and if I had any kids. She asked me if I could feel anything while examining my bladder.I was sent for a cysto. At my consult, everyone in the waiting room was as old as my parents or older. The doctor said he saw a 4cm tumor but couldn’t remove it due to it being located beside one of my kidney ducts. He was concerned about scarring.
I was sent to a urologist. At my consult, everyone in the waiting room was as old as my parents or older. He informed me that I do have cancer.
I had surgery by laser Dec 27.
He removed a tumor “The size of a mandarin orange.” He did believe that it was superficial and that he removed all of it.I have another appointment Jan 11.
I am really nervous. No, I’m scared.I am so thankful that I have found you all. So many of my questions about recovery and treatments have already been answered. I will be much more prepared when asking my Dr questions.
Can any of you perhaps shed some light on my stage and degree?
Thank you for listening…
I really needed that.Simon.
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12 Replies
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Simon,
I had a really large tumor removed a year ago – it was described as a “stalk of broccoli”… how appetizing ;D… anyway, it was TaG1 – very non-aggressive. I had one six month cycstoscopy, and all i had was scar tissue (a little too much, but I scar easily)… My second follow-up is in a month, and I’m hoping for a repeat of the same good news. I was 47 when diagnosed, a non-smoking office worker/dog trainer.
So large doesn’t always mean bad. Oh, and my uro uses a rigid scope, and a local anesthetic; yes it’s uncomfortable, and it hurts to pee for a few days afterwards, but he let me watch the screen, which made me forget about the pain (I’m a sucker for Discovery Health Channel, so watching the inside of my own bladder in real-time action was cool..).
Be strong, remain fearless!
Lauren
TaG1 12/05
3 recurrences
BCG started 9/09
So sorry for your news, Rachael. You are in my prayers.
I had surgery by laser Dec 27.
He removed a tumor “The size of a mandarin orange.” He did believe that it was superficial and that he removed all of it. I have another appointment Jan 11.
I am really nervous. No, I’m scared. <>Can any of you perhaps shed some light on my stage and degree?
Simon.Hi Simon,
Sorry to meet you like this, yes, you’re too young. But surely not alone.
Some uros like to use lasers…I think Rosemary is right that biopsying a lasered tumor would be difficult if not impossible, but I suppose some tissue was taken for biopsy first. Most times I hear of laser getting used for those with recurrent papillary tumors of low grade, when the uro is quite sure of the dx (recurs are almost always the same with Ta,G1 tumors).
If your doctor is very experienced, he’s probably right the tumor was superficial/non invasive. The fact that it was large doesn’t necessarily mean it was aggressive. The pathology report will tell you more. Please keep us posted…and in the meantime do not scare yourself…stay off the Net until you have the exact diagnosis, or you’ll just make yourself more scared. Once you know, it’s much easier to deal.
All the best,
wendy
Hi Rachael,
Sorry to hear about your recent diagnosis. Too bad they didn’t biopsy while in there, but perhaps you weren’t sedated enough, and the doctor wasn’t prepared for that.
I’m thinking that the rash might be carcinoma in situ, some uros aren’t familiar with how it looks if they haven’t seen much of it and it’s supposedly rare (10% of blc), though plenty of folks have it. It mostly gets described as a red, velvety patch.
This would not show up on a CT. So you should definitely follow up, and of course you should get a second opinion, preferably from an expert. No good doctor minds and if they did, they’re not acting in your best interest.
Urine cytology tests are used to diagnose CIS and high grade bladder cancer. So the next urine test will be able to rule that out, hopefully.
Good luck with everything.
Wendy
Jamie Wright
Clinical Professor
Active Staff, Vancouver General Hospital, Pearson Hospital,
BC Cancer Agency
Vancouver
Hospital Authority: Vancouver Coastal HealthEmail: callie@interchange.ubc.ca
Special Interests
urological oncology
urethral strictures
vesico-vaginal fistula
renal calculi
laser applicationsThe biopsie is done from surrounding tissue.
Thanks Ro,
Simon.
Thanks-for-site-on-cystitis—the-pain-and-frequent-urination-sound-like-what-Iwas-experiencing…I-just-assumed-it-was-from-the-hysterctomy.—When-I-asked-the-DR-“a-rash”?????—He-just-said-that’s-what-it-appeared-to-be.–So-I-let-it-go.—He-did-not-say-any-biopsies-were-needed-in-fact-now-that-I-think-about-it,I-don’t-know-how-he-will-check-on-the-rash-since-he-said-I-wouldn’t-have-to-have-another-cystoscopy.—-I-might-add-that-I-am-a-firm-believer-that-they-should-at-least-give-you-a-local-when-they-do-the-cystoscopy.— >:(—Luckily-for-the-men-out-there-the-dr.-said-they-have-come-out-with-a-flexible-scope-to-use-on-them. ;D–this-from-a-dr-who-still-uses-a-mercury-thermometer-in-an-alcohol-stand!!!—-Ialways-try-to-stay-on-the-bright-side-of-things-and-most-of-the-time-drs.-sort-of-intimidate-me,-but-I-guess-maybe-I-will-get-asecond-opinion.
Than-you-so-much-for-searching-about-the-(rash)-that-sounds-so-funny-to-me-(rash)-ha-ha—Maybe-they-have-an-ointment-I-can-put-on-it.Rachel
Rooster,
I am not a doctor and am not trying to diagnose, but you might want to google interstitial cystitis and see what you think.
This is the only bladder condition that even sounds like a rash, and according to everything that I have read so far, it is very hard to diagnose, and goes misdiagnosed sometimes.
Unlike a urinary tract infection, interstitial cystitis cannot be diagnosed with a simple urinalysis or urine culture. Rather, it’s a diagnosis of exclusion, which means that a clinician — usually a urologist or gynecologist — will first take a thorough history and then perform tests designed to rule out other conditions. These include infection, bladder stones, bladder cancer, kidney disease, multiple sclerosis, endometriosis, and sexually transmitted diseases.
The next step is a procedure called cystoscopy with hydrodistension, which is performed under general anesthesia. The clinician inserts a fiber-optic tube through the urethra and into the bladder. The bladder is then filled beyond its usual capacity with liquid or gas to stretch it and allow a closer view of the bladder lining.
The most common sign of interstitial cystitis is red pinpoint spots of blood (glomerulations) covering much of the bladder wall surface (see below). Sometimes there are scars or lesions called Hunner’s ulcers, accompanied by low bladder capacity due to tissue stiffening (fibros…
Here is the site with pictures…hope this helps. It is all that I can come up with considering the information that the doctor gave. Once again, Good luck.
http://www.health.harvard.edu/newsweek/Diagnosing_and_treating_interstitial_cystitis.htm
This is a mystery.
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Okay,
I googled rash and bladder and can’t get a hit. :-X
I even googled psoriasis and bladder and didn’t get a hit.
My only question is this…
IS THE DOCTOR PLANNING TO BIOPSY THE SITE? IF HE DOESN’T BIOPSY THE SITE, THEN I THINK HE NEEDS TO PROVIDE YOU WITH THE PROPER NAME FOR WHAT IS IN YOUR BLADDER!
What this brings to my mind is when my sister saw the photos of my bladder cancer, she said, “That looks like psoriasis.” (We both have psoriasis) There were obvious tumors also.
The doc just gave her a glare. >:(
Anyway, I’m not saying that you have bladder cancer. But, I think you deserve a name for whatever it is that you have. If it doesn’t have a name, I think I would insist on a biopsy or a 2nd opinion.
Blood in the urine has an organic cause. Saying you have a rash just doesn’t cut it. Not to me anyway.
Good luck and please keep us posted.
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
I-am-supposed-to-return-to-him-on-the-16th-of-january-so-he-can-check-my-urine-again,–and-check-on-the-“rash”.–I-have-never-heard-anyone-say-“I-have-a-rash-in-my-bladder”
If-I-still-have-the-rash-and-blood-in-my-urine-I-will-return-to-every-three-months-to-check-for-blood-and-on-the-rash.
I-wasn’t-able-to-view-the-procedure-so-I-don’t-know-what-it-looked-like-(the-rash),but-he-said-it-was-at-the-base-of-my-bladder.–Iwasn’t-able-to-get-out-of-the-urologist-what-would-cause-the-rash,or-what-it-was.
I-don’t-think-I-want-to-go-back–I-think-that-if-something-were-really-wrong-thect-scan-would-have-picked-up-on-it.
Any-ideas-on-this?
Would-I-offend-the-dr-if-I-got-a-second-opinion,-or-do-I-need-one???
I-can’t-even-find-anything-on-the-net-regarding-a-rash-in-the-bladder.
Thank-you-for-all-your-help-even-just-listening-I-would-feel-retarded-telling-my-friends-I-have-a-rash-in-my-bladder—– :-[
Rooster,
I am glad to hear that there were no tumors.
I have not heard of a rash before. :-?
What is the next move?
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
My-computer-key-board-won”t
-space-so-I-have-to-use-this-key— ;D-thank-you-all-to-answered-I-had-the-cystoscopy-yesterday-and-the-urologist-checked-my-urine-again.–I-had-three-times-more-blood-in–urine-than-two-weeks-ago.–The-urologist-said-he-found-no-tumors-but-saw-a-“rash”-in-my-bladder.–What-this-is-I-don’t-know.–Should-I-get-second-opinion-or-are-rashes-in-the-bladder-common.–I-was-thankful-he-found-no-tumors-and-pray-for-all-of-you.Thank-you-all-again
Simon,
I personally have not yet heard of laser surgery for BC. I am fairly new here (diagnosed with BC Jan 06) and this idea is a first for me.
Perhaps someone else has more information about laser.
I’m just wondering how the tumour can be staged and graded when it is zapped? :-?
If I were you, I would google around for information on solitary/single tumor as opposed to multiple tumors in the bladder. See what you find. It MIGHT make you feel a little better.
My doctor thought I was young for BC (I’m 54). ….. Try being female too.
I hope you get back with us, and maybe someone here can jump in with more info on laser surgery for BC.
Good luck,
Ro
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
