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Diagnosed, removed, waiting on biopsy report

6 years 10 months ago #43131 by sara.anne
Woops....sorry to inundate you with terminology!!! Go to the top of the page, at the top click on HELP....then on "Bladder Cancer Diagnoses." You will find a LOT of information there.

TURB = transurethral resection of the bladder...this is when the doctor looks at the inside of the bladder with a camera and removes suspicious parts for biopsy; This is done under anesthesia.

BCG = Bacillus Calmette-Guerin (see why it is called "BCG?" This is a modified version of a tuberculosis vaccine which is used as immunotherapy, bladder cancer treatment, for some non-invasive (superficial) bladder cancers. It is very effective, especially with CIS.

And yes, it is not uncommon to have both papillary (cauliflower or mushroom-like tumors) and CIS together. They both arise from the same types of cells.

Do your research...as I mentioned above, there is a lot to read on this web site. That way you will have a better idea of what is going on and be better prepared to discuss this with your doctor. And we will try to answer any questions you might have.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 10 months ago #43130 by shihtzudaddy
thank you for the reasurring words and I hope I'm here helping others in 5 years too! I don't even know the lingo here - BCG, TURB (assume this is the scope procedure), papillary, so I better start reading and learning. I just feel scared that 2 different types of cancers have been found in 8 weeks.

I would have thought the liquid chemo would have put a stop to it for months. Is it normal to have 2 different types?

The first was a cauliflower, white growth. These are an ulcer type as she described it. I haven't read enough and thankfully have not been dealing with this long enough to know what to ask or what to read and trust.

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6 years 10 months ago #43129 by sara.anne
You are very fortunate that your urologist didn't just dismiss this. My "guess" is that the first tumors were papillary. It is not uncommon to have a second TURB some weeks after the first; bladder cancer is notorious for being underdiagnosed. The second time, the urologist has a better idea of where to look.

This is what happened to me....very similar to your situation, except that I felt kind of rotten before the first TURB. The results from pathology came back with a diagnosis of papillary carcinoma, but with some areas that were "undetermined." A second TURB with special attention to the uncertain areas refined the diagnosis to include CIS (carcinoma in situ). My urologist explained that the CIS diagnosis could explain my symptoms. I then had a complete series, with maintenance, of BCG and now, four years later, am doing fine. The rotten feelings eased up not long after I started the BCG.

You and your doctor are doing all the right things. This is not an "end of the world" situation, and it is very likely that you will be here, reassuring new patients, just like I am in five years!

Let us know what the new diagnosis and recommendations are. There are lots of people here who will be able to help explain it.

Best of luck to you

Sara Anne

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

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6 years 10 months ago #43128 by shihtzudaddy
Update: The biopsy came back as 'non cancerous' however the surgeron was not buying that report. She knew what she took out and knew it was cancer. The pathlogist said there wasn't enough tissue for a firm diagnosis so we went on the grounds it was cancer and set up a 3 month appointment schedule. That was 8 weeks ago.

Last week I started feeling bad. Actually I haven't felt well since before the first diagnosis. Lack of energy and generally not up to par. I started having pain in the bladder area and felt like a possible infection then the blood apeared in the urine. Saw the doctor the next day (yesterday) and she did the scope procedure. She found 2 new cancers, different, more of an ulcer shape and these are in 2 different areas than where the first was found. She will remove it Monday. She didn't want to wait until the following week to have the procedure done - seemingly putting it off 1 week was more time than she wanted to wait.

She flushed fluid in the bladder to gather cells to send to pathlogy but that will take over a week for the results. By then I will have the 2nd surgery in 8 weeks. The liquid chemo put in after the first surgery apparently didn't scare off the new cancers. Why? Shouldn't the chemo have done some good?

She said after seeing what the path reports show this time she may want to do CT scan to make sure there is no cancer on the outside of the bladder or other organs. This is really scarey and I don't know what to think since it came back so quickly and seemingly more aggressive.

The first cancer looked like a cauliflower but these are red and black scab looking tops. She calls them ulcers.

Can anyone explain? Also the first cancer didn't come with pain. I now have pain in the bladder area. When I asked why pain now the answer was "it's different this time"......meaning????

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7 years 3 weeks ago #42534 by mmc
I did this flow chart a long time ago that shows the various treatment paths.
Have a look at this: http://bladdercancersupport.org/bladder-cancer-forum/3-newly-diagnosed-/28419-the-map-of-the-journey.html

Short answer: If it is just the top layer (sometimes called superficial but I don't like to call it that because it seems to trivialize something that should not be) and if it is low grade then it is typically a cystoscopic exam every three months for a year or so, then every six months for a couple years and then every year.
The reason for this is that bladder cancer has a very high recurrence rate.

If it is high grade then you will likely be treated with BCG. If there are not clear margins or if it is mid to high grade (2 or 3) you will likely get a re-TURBT in 6-8 weeks. This is also VERY common to go back in for the 2nd TURBT because bladder cancer is also VERY OFTEN understaged initially. It also is a way to make sure they got it all and nothing came back.

While the words above don't sound so great, bladder cancer is actually VERY treatable. Hopefully, they caught it early, got great margins, it is only on the topmost layer of the bladder and is low grade. :)

Let us know as soon as you know something. We're here to help. We've been there/done that!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 3 weeks ago #42533 by upnorth
Welcome Shihtzudaddy, (There going to love that name)

Well have you caught your breath yet? We all know how fast and furious the first few weeks are. They have to be. The sooner you get the bad stuff out, the sooner you can move on to the rest of your new life. Don't be afraid of what is coming next, you will learn to take one day at a time. We will do are best to make sure you are not left alone on this journey.

I am on a three month schedule for cystoscopy to keep an eye on things. I have low grade non-invasive cancer that was removed bu a TURBT. As long as the cancer doesn't come back I will not have to do anything else.

If it does come back, that will mean another TURBT, followed up with BGC or Mitomycin. That will all have to be determined at that time. It all depends on how aggressive and what the cancer looks like. This is usually followed up by maintenance BGC treatments.

If it gets more aggressive, or isn't controlled by the treatments, then we start to look at taking the bladder out (radical cystectomy or RC). This sounds scary and it is a little, but not nearly as scary as not doing it. Many here have had an RC and are doing just fine, and living full productive lifes.

But lets not get ahead of our selves. Lets wait and see what pathology has to say. They are the biggest step in identifying what type and how aggressive it is.They will stage and grade it, when you get that information let us know if you are still confused we will help you understand it better.

The internet has some good and some bad info on it. There is old information that shouldn't be used any more also, so care-full for that.Here is a good site to start with.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032729/

You will have many questions and that's alright we will try to help as much as we can.

Hang in there.

Mark

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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