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Scared

3 years 10 months ago #51176 by Fecampbe
Howdy,

My experience is very much like Cynthia's. I was diagnosed with bladder cancer in August 2001. The fear was gripping. Since my diagnosis, I have had over 40 cystoscopies, Chemo and radiation in 2014, a nephrectomy of my left kidney in July 2015. I had BCG in 2012. I have had four urologists in that time frame.
In the last 14 years the biopsies always come back as low grade superficial transitional carcinoma. I'm glad of that but it is getting old. I'm starting another course of BCG in June.
I'm not a Dr. or psychologist but I can give you some advice. NEVER LET IT GET YOU DOWN! I've been living with it with a smile on my face and the Dr.'s can't believe it. I am not usually a positive person but I have maintained a positive mental attitude and it has kept me alive. I'm a 66 year old man and a voracious fighter.
Keep smiling, don't let it control your life, take one day at a time, follow your Dr.'s orders and, hopefully you will have a long and happy life.

Regards

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3 years 10 months ago - 3 years 10 months ago #51170 by Jack R
Jim,
Your initial post included one of the magical words - "superficial". Superficial means that the suspect tumor the doc sees is on the surface of the bladder lining - that is good. Your full workup will include remove the obvious tumor, and tissue samples will be sent to pathology to determine the nature of the tumor. After a full workup you will have specific information on your situation. You are in the early days, and seem to be in a good place.

Superficial bladder cancer is highly treatable. One treatment goal is to prevent superficial from developing into "invasive". Superficial bladder cancer frequently reoccurs following initial treatment. You will develop a long term relationship with your urologist as you monitor the bladder for a reocurrence in the years ahead, treat the superficial as it shows up, and perhaps embark on a medium term treatment and prevention schedule.

The first weeks after diagnosis are rough. We all want the cancer fight to be instant and furious, but everything seems to take forever. Once the doc says "cancer" we seem to lose track of anything else that is said.

Best, Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back...
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3 years 10 months ago - 3 years 10 months ago #51169 by Alan
Most of us had the same feelings and emotions so, step back and take the deep breath. I have learned to take one day at a time! Thus, until you have the pathology report you won't really know what you dealing with. Low grade, high grade or possibly none of the above. Mayo on 5.31 is really pretty quick. That is 8 business days so count yourself fortunate and yes tumors don't grow wild in 2 weeks. Mayo is a good choice as I am sure you were put into the sub specialty of bladder from your doctor. I say that because MD Anderson is my backup and there is a sub specialty of all bladder there just like Mayo.

The good news is, while this is early in your journey it sounds like you are already fighting, planning and on your way to beating this. Keep posting as you have questions.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 10 months ago #51168 by jfmmeyer
Thank you Nicke. Will keep in touch. Just curious... You mentioned a bad habit of reoccurrence. Why?

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3 years 10 months ago #51167 by Nicke
Hi,
Sorry about your possible diagnosis. I was in your place 3,5 years ago. Diagnosed at 46, never smoked and healthy habits. Bladder cancer is very treatable, even if it has a bad habit to recurrence. I am cancer free since 2,5 years and doing fine.

No, waiting 2 extra weeks will not make any difference. Whatever is growing in your bladder has been there for a long time. If you have more confidence in Mayo, go there!

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb
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3 years 10 months ago #51166 by jfmmeyer
It looks like I can't get into Mayo until 5-31. I'm assuming I won't have anything done like the TURB I till the next day from 5/31 or so... It's it ok to wait, by waiting to go to Mayo will e mass grow worse from now until then? The doctor I'm seeing is Dr. Stephen Boorjian at Mayo. Good? As you can see I'm a ball of fears..... Please help anyone.....

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