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BCG?

10 years 9 months ago #24789 by britt
The hospital wants 25 dollars for a complete copy of my records. I tried to get them from the Dr who did my TURB. It seems he didnt bother to bring therecords with hime so he has nothing. Im also afraid he might be getting a bit senile. 2 weeks after my TURB hed didnt remember anything about my case. He had to do off his notes. I am bothered by the fact that some one could spend over an hour inside of my and not remember any details!
I hate to beat a dead horse and Im really trying not to oscess over this! Could anyone give me a "to do list" in case the VA dr still doesnt have my records,
Thanks for all the input so far.
My health is compromised by these issues,
CAD-5 MI's 11 stents
CHF- My EF was under 15% before starting on correg
Attenuated kidney function due to CHF
moderate-severe PAD in my legs
COPD/Pulmanry edema- again caused by heart function.
accute hyertension-in check now for the 1st time do to the correg. If anything I go hypotensive now
Type II diabetes
severe arthritis and joint damage causing chronic pain0treated by opiate based pain meds
history of bladder infections and kidney failure due to nasaid
high white count possibly due to serious bouts of MRSA contracted at VA.
These are the reasons that we are so concerned and hoping for long term treatment with the same uro Its not looking good for now but the plan is to fight for care outside VA. I have a 100% VA disability and recive a supplemntal aid and attendance pension which gaurrentees my health care package at no cost to me/
Thanks again
britt

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10 years 9 months ago #24786 by mmc
If the records are lost, I'm not sure what else they can really do.

However, I would suggest that you request a copy of your records that they do have AND that you request a copy of the Dr. notes for every subsequent appointment you have in additionl to a copy of every pathology, culture, scan, and whatever other test/procedure gets done from now on.

Keep all the records well organized, check them for accuracy, and consider creating a summary. I found the summary to be quite helpful when I went for second and third opinions. I started from my very first Uro visit and listed symptoms I had that got me referred to the Uro in the first place. I just listed the date, the procedure and the notable differences from norm. Stuff that was normal, I just said normal or negative or whatever made sense in the particular instance. Tests that had results that had some things normal and some things not, I just listed the ones that were not.

You don't need all of the things the doctor told you during discussions in your summary. Just the facts. Diagnosis: blah blah blah.

With the summary, you have a better chance of ensuring that any subsequent doctor has all of the relevant information.

Almost forgot, I did list relevant medical history. For example, an appendectomy is relevant. Some surgeons like to use the appendix for a conduit in the case of an RC. I didn't want them hunting for it since it was already gone. Other things, Like surgery for a deviated septum I left off my summary because they aren't really relevant to bladder cancer or any of its potential subsequent treatments.

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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10 years 9 months ago #24785 by britt
All I know is that it was a non-invasive surface cancer along with a tumor(which was malignant). The dr said he got it all. I see the VA uro monday and i made a stink about them having my records found. I know they were sent to the VA but they dont seem to be in my chart.
The PA I saw just doesnt care about any of it. his POV is that we start fresh using the surgery as the first stepping stone. All that matters to himis what is found from here out! I dont like that at all!

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10 years 9 months ago - 10 years 9 months ago #24784 by Patricia
Britt...have you even been given a pathology report with stage and grade from your TURB? If not how do they know anything.....they seem to have lost it right. Here's Lamms protocal

[url] http://blcwebcafe.org/content/view/112/122/lang,english/[/url]

Pat

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10 years 9 months ago #24783 by mmc
Britt,

If you just had a tumor, that may be true. If you had CIS then that is incorrect. It is not for recurrence.

Do a Google search on BCG. Check out Dr. Lamm's website, Sloan Kettering, MD Anderson, etc. for BCG information.

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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10 years 9 months ago #24782 by Moonerj
"I have just been diagnosed with bladder cancer. Do I need BCG?"
Dr. Lamm: Not necessarily. While BCG is recognized as the most effective intravesical (within the bladder) treatment for bladder cancer, it is not the best for every patient. Patients who have a single tumor that is small, low grade, and without invasion, that is stage TA, have such a low risk that the cancer will later invade or spread that BCG is not generally needed.
Could it be used? Yes, but we prefer to give a single intravesical chemotherapy treatment at the time of surgery to prevent seeding or implantation of the tumor. If the tumor comes back or doesn't respond to chemotherapy, BCG can be given. We strongly recommend that all bladder cancer patients quit smoking.

Hi, Btitt
I have copied this from a question that Dr. Lamm answered on his web site.
Dr. Lamm is considered an expert in the treatment of BCG.
I hope this helps.
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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