Thank you for all the great information!

12 years 11 months ago #37419 by LuLu
Replied by LuLu on topic Thank you for all the great information!
Thanks again for sharing your stories and your support. I got some good news from the cytology that was done last week -- negative for malignancy. I know it doesn't catch everything, but it's better than the alternative!

I got the cystoscopy note today, and it notes heaped up papillary tissue and a small erythematous area-- "concerning for something less benign." Gotta love doctor speak. Hopefully, I will be told I'm seriously overreacting tomorrow at Hopkins.

By the way, I'm a 38 year old nonsmoker. No chemical exposure, but high risk due to the immune suppressant Enbrel for psoriatic arthritis. Yes, I'm quite the catch. ;)

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12 years 11 months ago #37418 by DougG
Replied by DougG on topic Thank you for all the great information!
Lulu,

I'm impressed with your speed of action and the speed of the response you got! Glad you are in good hands. Prayers are with you.

Anita & Doug

Anita
Forum Moderator
Caregiver

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12 years 11 months ago #37416 by CatherineH
Replied by CatherineH on topic Thank you for all the great information!
Tumors seem to have their own evil little personalities. Mine looked like a small walnut attached to the lining at the dome of of my bladder just kinda floating there on the ultrasound. It turned out to be invasive. My ob/gyn found it after two hours of checking different things to find the source of a small amount of blood observed when I went to the bathroom.

Sara Anne said it right... you have acted quickly to get yourself to one of the top doctors in the field of BC. Will be thinking of you and hoping for the best possible outcome in your treatment options.

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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12 years 11 months ago #37411 by mmc
Glad to hear things are moving fast. That's great.

Mine only looked like a red patch. It was CIS.
As Sara Anne said, there can be different kinds. I had only CIS but it is common to have another type.

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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12 years 11 months ago #37410 by sara.anne
Replied by sara.anne on topic Thank you for all the great information!
Laura, it is wonderful that you took responsibility yourself and got yourself into a great place. With the complications that you have, you want the best!!

I had two TURBs...at the first there was one "mushroom-like"
growth (papillary) and some "irritated" areas that did not biopsy for cancer. But my uro was not satisfied and did another TURB several weeks later, did extensive biopsies of the "irritated" areas and the diagnosis came back CIS. So yes, it is very possible not only to have more than one tumor, but to have more than one type.

You are in great hands and we will all be keeping good thoughts for 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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12 years 11 months ago #37409 by LuLu
Thanks to everyone who posts for getting me up to speed and referring me to the best doctor. I do not even have a diagnosis yet, but Dr. Schoenberg at Johns Hopkins rearranged his schedule to see me tomorrow. What a guy! He emailed me back within 20 minutes on Thursday night, and Charlene had emailed me the next day at 6 a.m. and called twice by eight to get me in for a cystoscopy. I don't know whether to be impressed or scared!

Today, I get my cytology report from the local urologist. They are having their part-time pathologist come in just to get me the results in time for my appointment at Hopkins. The cystoscopy last week showed two growths and a red patch, and he wanted to schedule the surgery to biopsy in four weeks. My husband didn't like that we had to wait so long, and thanks to all of you, I figured I would email an expert and see what he thought I should do. Never in a million year did I expect he would see me, but I feel much better to have someone I completely trust and don't have to second guess.

I guess I am a little paranoid about doctors since my urogynecologist that I was seeing about my UTIs urged me not to have the cystoscopy, and didn't run a single test in the six years I've been seeing her. I also have high-risk HPV which has reactivated, and has caused CIN1 with endocervical gland involvement on my cervix. She wants to wait and see, but I think this is part of the reason that Dr. Schoenberg wanted to see me, so hopefully he can give me advice and a recommendation for a new gynecologist. He has written a couple of papers about HVP's involvement with bladder cancer.

Anyway, the question I have is what did your tumor look like in your first cystoscopy and were there more than one? Is it a bad sign to have multiple suspicious areas? My bladder lining looks smooth and healthy, but with two growths that look like molars! The red patch was oval and clearly defined. These were clear abnormalities, none of the searching the screen trying to find what the doctor was talking about. The nurse remarked that she had never seen anything like it before, which certainly wasn't helpful. However, given that they have an in-house pathologist, it seems like the nurses would have seen bladder cancer before, so I'm wondering if the tooth-like appearance of these growths is not what cancer looks like and they are some kind of obscure benign tumors or cysts. Maybe I do have molars growing in my bladder! ;)

Thanks again for everyone's wonderful information and support.

Laura

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