Recently Diagnosed /Questions/Concerns

[Refractoryman]

Hi, glad I found this site. I am a 61 year old male / American / never smoked other than SECOND HAND. I have a history of kidney stones and occasional blood in urine. But I always assumed it was from the stones and never got alarmed. I went in for a CT scan for another issue and a small (5mm / .19″) mass was seen on my bladder. I followed up with my urologist and after a cysoscopy and a Biopsy / TURBT I was diagnosed with bladder cancer. Doctor said tumor was Ta and CIS was also found per below . I was told it was superficial and caught early. I have some questions. Biopsy results are as follows:

A) Bladder Biopsy #1

Urothelial mucosa with congestion No definite evidence of maligancy

B) Bladder Biopsy #2

Urothelial CARCINOMA IN-SITU (CIS)

C) Bladder Biopsy #3

Urothelial CARCINOMA IN-SITU (CIS)

D) Bladdder Tumor

NON-INVASIVE HIGH GRADE PAPPILLARY UROTHELIAL CARCINOMA (ISUP/WHO 2004)

D) Bladder Tumor, deep

NON-INVASIVE HIGH GRADE PAPPILLARY UROTHELIAL CARCINOMA (ISUP/WHO 2004)

Muscularis propria (detrusor muscle) present, not involved by tumor

As the doctor was going over the results my mind went completely blank… To say the least I was shocked and could not think of any of the questions I wanted to ask him. His recommended course of treatment is to start a 6 week BCG regiment next week with a bladder biopsy to follow 2-5 weeks after the BCG. He did explain to me that back in the day a total bladder removal would have been recommended. But since the advent of therapies like BCG and the type of cancer I have that the BCG as of now is the first line treatment. I have agreed with the doctor and will begin treatment. So below are some questions I wanted to ask the doctor but forgot to ask. Maybe some on this forum can help with following:

1 .Can you please share comments on what I might expect with the BCG treatments. As I said I am glad I found this site because I have read some HORROR stories on other sites about BCG treatments.

2 .Part of me says watch and wait but then the doctor says you are really lucky that the radiologist picked this up and it should be treatable with BCG. (BCG is scheduled this week Wednesday 9/27/2017).

3 .Is the BCG a good treatment plan?

Any other comments would be greatly appreciated.

Thanks

[Jack Moon]

Hi Refractoryman
Sorry you have been diagnosed with bladder cancer. I was diagnosed in 2005, had 2 small recurrences, and have been all clear since 2007. Between 2006 and 2009 I had 30 BCG treatments. I found the side effects of BCG treatments to be progressive from treatment 13 to 30. My side effects were urgency, burning, spasms, and fatigue. During my 1st 12 treatments only urgency and burning the day of the treatment. Based on your pathology report the gold standard would be to begin with BCG treatments.
https://www.cua.org/themes/web/assets/files/guidelines/en/3320.pdf
Side effects and results of course to vary from patient to patient.
In my case BCG was a great treatment plan as I have been all clear coming on 10 years.
I wish you all the best with your upcoming treatments.
BCG = Bladder Cancer Gone
Jack

[cheryl9]

Hello Refractoryman

Welcome to the site no one wants to belong to.

Your diagnosis sounds very similar to mine. That was in 2014 and 2015. 30 BCG treatments, three surgeries and two fulgurations later, I have been cancer free for over two years and still have my bladder.

BCG: please don’t fear what can save your bladder and your life.

BCG has been the gold standard for treatment for around forty years. It is not chemo. It is immunotherapy. The BCG stimulates your immune system.

It is a very simple process and takes about ten minutes. From experience, research and info provided by hospital, suggest the following:

– stop drinking liquids four hours prior to treatment. Research indicates there may be a reduction in BCG effectiveness when diluted by too much urine
– the BCG is directly instilled in the bladder then you hold it in for two hours, do rotations every fifteen minutes to ensure bladder surfaces covered
– after two hours, void BCG
– start drinking lots of water after the two hours. Will make a huge difference on how easy the next six hours go
– nurse also told me drinking lots of water will reduce risk of infection
– you will have cleanup and safety protocol to do over the next six hours. BCG is infectious and you don’t want to risk infecting others
– protocol includes bleaching toilet bowl each time you void, cleaning yourself well and disposal of any residual products during the six hours
– I live on acreage thus don’t use bleach so I claim a bathroom to myself for the six hours and flush three times after each void. Also use nitrile gloves

It is not as scary as it sounds. BCG is actually a muted tuberculosis virus to reduce risk but precautions are prudent.

The BCG works by irritating the liner of the bladder. The bladder then sheds the liner during the six hours after treatment. By layman’s terms, that creates an environment that no cancer cells want to stick around in. Also puts the immune system on high alert for policing the bladder. The liner that is shed regrows.

Check out the literature available on this site and it will give you lots of good info. Do not spend much time looking at other sites as they will scare the pants off you. This site has way more legitimate info.

In the meantime: take a deep breath or two or three or however many it takes; hug those you love; cry if needed; spend time with those you care about; find something to laugh about. Then you will start to heal.

Also get down from swinging on the rafters. Takes way too much time and energy and just leaves you with bumps, bruises and slivers.

Take care
Cheryl

[peace]

Hallo everyone!

I am very new to this site, bur it looks like it is one of the best around. I have been diagnosed three weeks ago with “Papillary lesion in the bladder (1 centimeter)” and I am scheduled for TURBT on the 25 July, for days from now. As it is the first time, I am just trying to get as many info as possible before I go through the process. I am quite confident that everything will be ok, but as you must know, the mind gets really stormy at times. I am in Italy and I have one of the best urologist here, still I would like to know what to expect from anyone who has gone through the operation…. with many thanks and a heart full of gratitude!

Roberto Scheibel

[Author]

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