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CIS TUR next Thurs. Possible complications

1 year 3 weeks ago - 1 year 3 weeks ago #54356 by Jack R
Moorpheus,

Congrats on "No Cancer" *IF* that is true.

Unfortunately, this episode is not over for you. You had a urinary bleed. You do not know what caused the bleed. (you may never know) Bleeds can be {EDIT: Caused by} urinary cancer, or many other things.

The doctor owes you a full report on what has taken place. If the doctor has simply walked away, the medical-legal term is abandonment. If necessary call your state medical board for how to proceed.

Your medical records are YOURS. Call the doctor's office, you may need to fill out a form, and have the records mailed to you.

The hospital or surgery center will have records. Again, they are your records. Call to have them sent to you.

MOST IMPORTANT, get a copy of the pathology report. Make sure you understand the report, the sample collection, and the conclusion.

Take all your reports to your NEW Urologist for an evaluation, and follow-up on the bleed that started all of this.
Do not assume that you are cancer free until you have a REAL doctor opine.

I hope you have Nothing !

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 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 , round 3
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1 year 3 weeks ago #54354 by Alan
Moorpheus,

I am repeating what I posted 4 weeks ago when you were down. "Why so glum? You ARE an educator! This is merely a bump in the road. Go on and teach and be a positive for your students! You are going to be stronger and more effective when this is over."

I still remind myself, something someday is still going get me. None of us have a lock in this life. Now go ahead and live your life as the rest of us with or without this disease and enjoy it! I/we are certainly rejoice in you not having this cancer!

Lab results? They are yours. Call them and have them prepare a copy. Not hard to do.

The catheter and irritation will subside.

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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1 year 3 weeks ago - 1 year 3 weeks ago #54351 by moorpheus
.
Monday or Tuesday (surgery was Thursday) got message from doc saying he had the lab results and there was “no cancer.” Nothing else. I waited for more information, but none was forthcoming.

A few days later, I called and left message him saying I was thrilled to not have cancer and I wanted to know the diagnosis and wanted the surgery notes and all test results. No response.
Any idea how to get my records?

I don't know why the doctor made such a definitive diagnosis of Bladder Cancer with never a suggestion there was a possibility it wasn't. Never "it looks like" or "we need to check it out in case" Nor am I happy he never explained anything. I liked him so much and he felt so competent.

The doctor's lack of information was really upsetting. I was getting my "affairs in order" and it was a major downer and . . . well, those of you with cancer know how those first 2-3 weeks after diagnosis are!

Keep healing and all is okay except the catheter, insertion of whatever and "surgery" seem to have damaged my urethra and I have frequent urgency w/ incontinence. Not happy about this.

I guess since there was no future of treatment profits, I was dropped.

So, here I am, okay and celebrating no cancer.

Does anyone have recommendations for how to get over the inflicted incontinence?

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1 year 3 weeks ago #54317 by moorpheus
Yay. Thanks so much for your info. It was very encouraging!

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1 year 3 weeks ago - 1 year 3 weeks ago #54316 by moorpheus
Day of surgery
All was well.
Pleasant Staff.
Doc stopped in and I asked him about his taking off Friday and he said yes, he and his family were off to a wedding. I like him and trust him.
Nurse said something about "tumor"
Surgery over.
Great pain from the catheter almost screamable. Male nurse told me it didn't hurt. :evil:
Discharge.
Doctor never came to see me post surgery. I was confused. What happened?
Friend drove me home, but first to lunch because I had to wait for the prescription to be filled. (later discovered it was just for AZO but cost more as a prescription)
Frequent horrible screaming pains from catheter (spasms) Became catheter expert.
Took out catheter next morning (as instructed) and all calmed down.
No phone call from Doc OR his office, but got one from hospital. Message said basically if I had any problems or pain call somebody (no recommendations)
Pain was basically from catheter. Didn't feel anything strange (as far as I remember) within bladder or lower abdomen.
I just handled it. Back to normal activities (except urgency/incontinence)
.
Thanks. Appreciate input

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1 year 1 month ago #54140 by Jack R
Moorpheus,

I get that you are feeling down, maybe a bit depressed right now. You have had a lot pressing on you since your diagnosis of BC on September 20. But, being ready to lose the bladder BEFORE you have a TURBT and find out IF it even is CIS, or is even cancer at all, or what stage, is quite a leap.

Wait for the pathology report before reaching any decisions.

Don't believe everything you read on the net. Get some real information about BCG treatments. If you have survived having the flu, you can make it through BCG. If necessary medications are available to handle the temporary side effects.

If you (and many of us here) run out of other options, we will be in line for bladder removal. No one here is looking at a radical as the preferred option, but we will all adjust to "that new normal" if that is where we have to go.

Again, wait for the pathology report, and a good medical opinion (and perhaps a second opinion), so that you can answer your own question, " After they remove the cancer from my bladder, then what?"

Bladder Cancer sucks. We got it, It's got us. But we will get through this. Hang in there.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 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 , round 3
The following user(s) said Thank You: moorpheus

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