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Newly diagnoised with questions.

2 years 2 months ago #52062 by Sean T
I went to Johns Hopkins (to a bladder cancer specialist, as recommended by this group). He recommended that he go back in and take a look inside my bladder to see if there is any more cancer (he is going to put some kind of dye in there that lights up if cancer is present) then, if all clear (which I hope), I'll begin six weeks of BCG. He doesn't think I need to wait any longer for my bladder to heal, although treatment doesn't begin until early November. I'll keep you posted.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Sept. 12, 2018 - cancer free!
The following user(s) said Thank You: dani

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2 years 2 months ago #51988 by Sean T
Thank you everyone for the information. I have an appointment with Hopkins. I'll keep looking at the site (and contribute information when I can) and I will certainly keep you updated on my own story.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Sept. 12, 2018 - cancer free!

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2 years 2 months ago #51971 by Cynthia
John, your instincts are good on this one. I would get a second opinion if you are confused. I would definitely go forward with JH's, pathology is an interesting thing it seems that experience with the type of cancer being looked at matters it is always a good idea especially with a T1 DX that you make sure there are good margins. The probability of it coming back the same is 60-40 depending on the study but enough to want a review with a center that sees a lot of blc. T1 is noninvasive but it is the one right before T2 so you want to make sure that you are very sure of your treatment and pathology. A second opinion is a great idea even if it offers peace of mind that they both agree. I am not trying to scare you blc is very treatable at this stage you just want to make sure you make informed decisions and keep doing well. A good choice is someplace a University Hospital, an NCI affiliate hospital or best of all a major center. JH's is one of the best in the world if you are near. Under help in the main menu is a link to our treatment finding if you want recommendations let us know what state you are in.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
The following user(s) said Thank You: Sean T

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2 years 2 months ago #51970 by Sean T
Thanks again, Sara.

I had a specific concern (that he wasn't giving me BCG fast enough) but your opinion on that made me feel better and now I feel like I probably should hold off on getting a second opinion. I was going to have the slides sent to Hopkins. That's the way they do it.

I guess it wouldn't hurt getting a second opinion but I think Hopkins is going to say the same thing my doc said (and your opinion confirmed).

Now I'm confused.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Sept. 12, 2018 - cancer free!

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2 years 2 months ago #51968 by sara.anne
It is never too early to get a second opinion, as long as you know what questions to ask. I assume that you will have the path slides sent to JH? They will double check the diagnosis and can confirm or modify the one you received from your urologist. Or will you be going yourself for an exam?

Do you have specific concerns or are you just looking for confirmation?

Sara Anne

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

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2 years 2 months ago #51967 by Sean T
Thank you so much, Sara. That is a relief.

I'm getting a second opinion from Johns Hopkins. Do you think it is too early for a second opinion?

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Sept. 12, 2018 - cancer free!
The following user(s) said Thank You: dani

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