Diagnosed about a week and half ago

7 years 8 months ago #51768 by GKLINE
Replied by GKLINE on topic Diagnosed about a week and half ago
Hi
Your Reaction to the c word are absolutely normal. Scared, and disbelieving are normal. The scope is easier to go thru if you relax (yeah I know "IT's hard) and after a few, you will find them easier. The TURB is a minor surgery..... But it IS surgery !
After they remove the tumor, they will send it out to pathology to have them analyze it. The you will all know what is going on. And then you will come up with a game plan.

You are going to get thru this. All of us here have been thru various stages of treatment and surgery. Don't be afraid to look here for a shoulder to lean on, or an experience we may have had, or to VENT(very important) or to ask questions of us (we are only survivors but we can help)

If this helps..... You and your urologist are about to have a very close relationship and all self conciousness goes out the window at the urologist. It still makes me squeemish but I tell my Dr everything and I ask him a LOT of questions.

Best of Luck

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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7 years 8 months ago #51743 by jroza1
Replied by jroza1 on topic Diagnosed about a week and half ago
I was diagnosed at 37, so I feel your pain on thinking we are too young for this stuff! No cancer is great or good, but some are less terrible based on their outcomes and treatability - and this is very treatable. As you do your research you will find that there are a few types some are more aggressive than others. I was diagnosed with a fast growing or aggressive transitional cell type, which sounds bad, but it was caught at stage 0 - so there was no muscle involvement and no chance of spreading. Since Feb, I have had 4 Cystoscopies, 1 surgery, and 8 treatments and no lie, they are not comfortable - but watching friends with bowel cancer and lymphatic cancer I think my stars every night.

My health plan is with an HMO, so basically everything has been covered. I am participating in a study mainly because I want to help others. The HMO is a not-for-profit that also does a ton of research.

What ever you do, don't bury your head in the sand - that's what will kill you. Just know that every thing that happens and ever treatment only has a very short timespan for pain. It's the 2 days after surgery, the 10 minutes of the cystoscopy, the first 2 hours after BCG or the 30 seconds of "passing through the prostate." But you can work through all of it and your like, with the exception of the day or two here and there where you need recovery - this is pretty non-invasive. Don't plan on working on days where you get BCG, but days when you are having Cystoscopy it's possible to work before and after.

Josh

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7 years 8 months ago #51673 by Jopo
Replied by Jopo on topic Diagnosed about a week and half ago
My Urologist also told me it was cancer during my scope. Maybe his 43 years of experience helped ~ I didn't know the grade until after the pathology. I am extremely lucky, it was low grade, noninvasive.
You have some excellent questions. Again, I don't have an answer or even an opinion on that.
I see my Urologist next week for our 'game plan'. IF, if, if my cancer should reoccur, I might get a second opinion at Stanford.

You said your scope was 'traumatic'? Emotionally?

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7 years 8 months ago #51672 by sara.anne
Replied by sara.anne on topic Diagnosed about a week and half ago
Not exactly sure what you mean by the difference between a "research and a for-profit" urologist. There is a HUGE difference between non-profit and for-profit hospitals, but all urologists get paid for their work! A physician affiliated with a research hospital may be more up-to-date on the latest treatments, for example.

Most important is having a urologist who sees and treats LOTS of bladder cancer. Many urologists mostly see patients with prostate issues and may not be as familiar with bladder cancer as you might wish. For example, my urologist is in private practice, but he is young and trained with some of the best in the country. He is very cognizant of all the latest in treatment of bladder cancer, which is his special interest. However, if my cancer returns, and I am faced with more complicated treatments, I would head for a research hospital.

BTW, as I said, your urologist may be 99% sure that you have cancer; he will only be 100% sure when the path report comes back, about a week after the TURB!!

Hope this answered some of your questions...if not, ask away!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 years 8 months ago #51670 by Ksteigerwald
Replied by Ksteigerwald on topic Diagnosed about a week and half ago
Thank you Sara Anne and Jopo. The urologist definitely said is was cancer but he said it is the best kind that I could get (what ever that means). The cystoscopy was traumatizing. That's why burying my head in the sand seems the best option at times. My Turbt is scheduled for Wed and should have the pathologist report in a few there after. Just curious, do you all believe there is a difference between a research and for profit Urologist. Thanks

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7 years 8 months ago #51669 by sara.anne
Replied by sara.anne on topic Diagnosed about a week and half ago
Cystoscopy is just the way the urologist does the exam. Sometimes there is a camera for him to look at and sometimes not, just the scope itself. It only identifies that there is a place that needs closer examination; in and by itself it is NOT diagnostic. The urologist may, because of his years of experience, be able to say that it is probably cancer, but until a biopsy is taken in a TURB and sent to a pathologist for analysis, no one can say for sure what the problem might be. If you went to another urologist, he/she would do another cystoscopy so that he/she would have a closeup idea of what might be there.

You might as well get used to cystoscopies!!! If you do have bladder cancer you will be having four a year for a while. And please remember, even if it is bladder cancer, this can be handled and dealt with when found early.

Wishing you the best of luck...

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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