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diagnosed 3/21 scared

14 years 2 months ago #1694 by Mike
Hi, now that you've had the two big shocks first the discovery that you COULD pee Ribenna and then the big C word (stands for either Character or challenge ;))

How does it feel to know that you are far from alone - I have had so many flexis they now sit me next to first timers to chat - most people get worried - oh no you ain't you can't be serious! Put that in there!!!

Then I tend to explain that a flexi is as simple as shelling Peas it is only later it gets like peeing shells!

Then you get to see the one they use for a TURBT, usually as a guy the first time you see it they already have you nailed into Gyny stirrups and if they didn't that is when you'd start running - oooooh no they won't manage that!

I've seen the most macho guys fade away like a very cold day at the pool!

The surprising thing is the lack of pain with most bladder cancer and TURs.

My bladder cancer has been pestering on for 5 years now - a nuisance and a perpetual excuse for never having headaches - ever since my radical nefrectomy in 2001 I don't have headaches they are potential Brain Tumours but strange how a pint of water usually cures them and failing that an Asprin!

I guess when we have been presented with our own mortality, even if it is as yet theoretical, you start to imagine the worst in the wobbly moments. I'm 60 so if I wake up in the night and my hip or thigh aches a bit I overlook the climbing fall in The Bernese Oberland 43 years ago, the ski fall in 1964, the rugby injury of 1962, the bad drop into the Congo in the 1970s, it must be Mets to the bone but as the dawn comes up and you get up and common sense returns what you do know is that BigC may be a Challenge but a huge number of us who face that Challenge every hour of every day could give master classes in stress!

Once you realise you are not alone and that your omnipresent fear is perfectly rational and almost always unwaranted it makes managing that stress easier - it is those who don't, won't or can't talk about it who improve Cancer statistics - they die of coronaries!!

When you learn to laugh about it the stress goes and survival figures improve hugely. Kpindy Kay you are not alone we are all frightened it is just a matter of control and perspective - don't forget we are all in fact mortal but for many of us the first time we were reminded of that with any efficacy was when a specialist muttered the word Cancer at us and most of us don't remember a word of the next hour of advice and instruction ;) remember!

How are you now almost 8 months later?

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14 years 3 months ago #1679 by kpindy
After I post this yesterday my uro called and test came back neg. no sign of cancer cells.
I feel soooo much better. Next check is at the end of Nov.

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14 years 3 months ago #1662 by wendy
Sorry to hear about your ongoing worries. Did your uro do urine cytology or other urine marker tests to check for cancer cells? If not, that might help rule out cancer.
Check out this info:
http://blcwebcafe.org/vysis.asp This test can be accurate even after BCG treatments. Your doctor should be understanding of the anxiety this causes and I don't see why he wouldn't agree...

There is more info on urine marker tests for bladder cancer here:

Please keep us posted.

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14 years 3 months ago #1659 by kpindy
I'm a little worried.
I went to see my o.b. in sept. for my yearly. I ask them to do a urine test it came back with trace of blood. My o.b. called my uro who called me. My uro ask me if I wanted him to do a biopsy or do an in office visit and go from there. I wanted the in office visit sept 26. I was to see him Oct 24. I'm still going to the bathroom alot. He check inside my bladder saw what he saw in July check some redness he says inflmation due to bcg treatments. Check my urine still trace of blood. I'm waiting to hear from my uro what was found.
I also ask my o.b if I can have other test done to make sure everything eles is fine for peace of mind. He sent me for a trans-vaginal ultra sound. That came back fine.
Any ideas why I would still have bolld in my urine? Why was it not there going through the bcg treatments?

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14 years 4 months ago #1173 by kpindy
Thanks Wendy,
I trust him. I was impress that he called me himself and not the office staff.
My Husband and I really trust my uro. He is one of a few dr's that don't hurry to get you done and out the door.
The cancer was not quite through the last linning before the muscle.
I don't know why I did not see this site in March/April when I was trying to get all the info I could. I'm glad I saw it this time.
The people on here are so kind and understanding.

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14 years 4 months ago #1172 by wendy

I don't blame you for being scared. But many times urine cytology tests come back abnormal after BCG treatments, indeed inflammation from the treatment can screw up the test. I guess that's what your doctor is thinking.

Do you know how deep the tumor was? If it were too deep BCG wouldn't help it, and sometimes BCG doesn't become effective immediately and can take a month, two, up to six months even. So the doctor must be very sure the tumor(s) were not too deep to begin with.

Waiting till October makes sense if you want to see the result of treatment. But not if you're worried of invasion. Have a good talk with your uro, maybe he can help you trust the choice more. If not, push him.

Superficial bladder cancer often gets overtreated and this can have lasting side effects. Uros are aware of this controversy, it's a fine line they have to walk sometimes, patients usually push for the most aggressive treatments and follow up schedules because of the anxiety of this diagnosis, so a balance has to be found.

In a worst case scenario, the standard of care would be not to let more than 30 days pass between definite treatment of an invasive tumor.

It's standard to wait 30 days between follow ups for a superficial tumor (for the first year, or following treatments, then it gets gradually longer in between follow ups).

Hang in there, and go after the answer you need to be able to sleep.

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