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AS the 27th Draws Near

4 years 10 months ago #47424 by sara.anne
Anne, as many of us say over and over we are not doctors. So our advice is just about worth what you pay for it! However, the "high grade" part would concern me. Have you considering getting a second opinion on your treatment from a place that specializes in bladder cancer? Yes, Hopkins confirmed the pathology...which is important...but I would wonder why your urologist is taking a "watch and wait" approach if there is high grade present.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 10 months ago #47422 by AnneH
Results after meeting with my Doctor.

Doctor said it's the same grade as the one from February grade two. I stated that is no longer used, it's either high or low..he said okay it's low. Asked what are our next steps, he said do nothing until your three month cystoscope, slated for February. I stated the BCG didn't work he said we don't know that to be true, it might have progressed without it. Then why wouldn't we continue with BCG? He than proceeded to say he or I shouldn't be surprised if another tumor was found in three months.

Based on his response I sent my slides to John Hopkins, keep in mind they only had slides, didn't know size or that I have had recurrence within first year of diagnosis and had BCG for six weeks.


1. Bladder Tumor resection
A, Benign Urothelium and underlying Stroma.
B. Non-invasive low grade papillary urothelial carcinoma with focal<5% Non invasive high grade papillary urothelial carcinoma.

Note the significance of a very minor component of high grade tumor in an otherwise lower grade lesion is of unknown prognostic significance.

That is what I got, so I'm assuming that my diagnosis from my urologist is correct. I'm hoping someone out there can confirm this.

Thank you everyone..

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4 years 10 months ago #47324 by pemquid
Glad for the good news Anne!

(another)Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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4 years 10 months ago #47322 by carol58
Wow Anne,

I appreciate you posting this! I did not know any of this was possible. I will definitely ask my doctor about this and have a few more questions to ask at my next cysto in January. This is truly scarey. My family wants me to have a second opinion anyway.

Thanks again Anne,

Carol58

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4 years 10 months ago #47321 by fighterm
Thank you Anne for the paper. I am new to the bladder cancer. I am scheduled to have the bladder biopsy on Nov. 10, so I will ask my uro doc to take some muscle. I have a small mass in the bladder that can be tcc or lymphoma. I wish it to be lymphoma, as I am treating it right now. I don't want to have a second cancer. Is this the second recurrence of your bladder cancer?

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 10 months ago #47316 by AnneH
https://www.google.com/url?sa=t&source=web&rct=j&ei=sbFVVMPdMcypgwTO84PgAQ&url=http://newsroom.ucla.edu/releases/quality-of-biopsy-directly-linked-to-survival-in-patients-with-bladder-cancer&ved=0CCAQFjAA&usg=AFQjCNFQuDnYzoZYnspb4SFMjuY0Vn8i8g&sig2=mW8lWRMbO-Z6ll6TMDM95g

Here is the article sorry I thought someone here posted this information. It really opened my eyes to the possibility since I'm not at an NCI center I might be at risk .

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