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Help! Questions before surgury

8 years 6 months ago #32246 by sara.anne
That is great news. Believe me, the worst thing about this situation is the uncertainty. You will be in the BEST place and will get the information a lot sooner. Once you know exactly what you are up against, believe it or not, things will seem better. You can organize your thoughts to face whatever it is instead of dreading the not-quite-known.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 6 months ago #32243 by mmc
Ann,

Yayyyyyyyyyyyyyyyyy!!!!!!

So glad to hear this. Getting seen sooner and knowing what he's up against is going to be a good thing. Being at Mass Gen is also a great move.

Keep us in the loop and keep showing your husband information around the site. Knowledge is power and the more you and he know the better you will be able to advocate for the best course of treatment.

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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8 years 6 months ago #32242 by annt64
Mike & Pat,

with a little coaxing and reading through this forum, my husband finally decided it was time to not sit back and wait.

He called Dr. Scott McDougel's office at Mass General and at first was told that there were no appointments and that he should have the biopsy and get the results then to contact them and they would get him in if needed. After a little bit of discussion they decided he should be seen and now has an appointment another doctor in the department on next Tuesday, June 1st, and is schedule for the TURBT on Wednesday June 9th.

I definitely feel a lot better about him seeing a specialist and appreciate all the information you have both provided.

Ann

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8 years 6 months ago - 8 years 6 months ago #32239 by mmc
Ann

My guess is we know more about bladder cancer than his primary care doctor....unless he has had bladder cancer also. Many of us have specifically researching bladder cancer for years.

The wait time isn't the most important thing though. It is that he has an opportunity to get to a top bladder cancer hospital now and get it done there instead.

We're talking about bladder cancer, not tonsilitis. Where you go really matters.
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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8 years 6 months ago #32238 by Patricia
Personally i think the time frame sucks...if you had already done the TURB and had pathology back and dependent on what that said its ok to wait up until 3 months to do surgery should that be indicated. But you want to know whats going on in there right now. I would make the call just to see how fast Mass General can move. It took me one week to get into MSK from Ohio for my second TURB.
You do not know whether this is high grade or low grade right now...just because the majority are low grade is no guarantee that it is...mine certainly wasn't and i had but one small tumor barely visable. BCG not given in low grade TO as its not effective against low grade..its more of a watch and wait regimen. If it comes back then thats another story. A re-TURB is always suggested after the first TURB within 6 weeks to make sure all margins have been gotten and no re-seeding. With an NCI center you're less likely to have that happen..better surgeons..better pathologists...more experience.
pat

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8 years 6 months ago #32237 by annt64
Hi Pat,

thanks for the info. I am going to talk to my husband when he gets home tonight and see if I can get him to consider going to Mass General.

Unfortunatly he talked to his primary care doctor recenlty and told him the urologizst wanted to wait unil mid June and the he said not to worry, the time frame was fine.

I'll let you know...

Thanks again,
Ann

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