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Newbie, scared to pieces

1 month 1 week ago #56176 by JIMG4
Sounds like you're researching and doing what you need to! Take breaks to not overload .....and speaking from a personal perspective, just remember you're the boss.

God bless you and keep taking those deep breaths!

J

10/25/18: TURBT
11/06/18: DX Ta - low grade non-invasive TCC

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1 month 1 week ago #56175 by CoraBell
Thanks Jim! It's a whole bunch of information overload. Yes, they are affiliated with Dana Farber. Right now going thru motions with Lahey, and feel a bit terrible for exercising Drs I know I probably won't end up using, but I'm sure they know how this all goes. Heading into B&W on 11/27.
It is just all so new, so unexpected - and down right scary.
I'm coastal North Shore and have been taking a deep breathe with every sunrise, cloudy or not!

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1 month 1 week ago - 1 month 1 week ago #56174 by JIMG4
Corabell,

so sorry to hear of your diagnosis. I was just diagnosed with the best possible news as it relates to bladder cancer (Ta non-invasive papillary TCC) so I have not been dealing with the issues that you are. Im no doctor,
however, I've heard good things about Brigham & Womens. And it looks like Alan is confirming the same in his reply! I would think you are in good hands as they are affiliated with Dana Farber I believe.

Like you I live North of Boston, right in the MA/NH line. We are fortunate to have the medical resources that we have readily available to us and not having to travel cross country or several hours to get to qualified care.

I'm holding you in my prayers and thoughts.

If you need an ear holler away.

10/25/18: TURBT
11/06/18: DX Ta - low grade non-invasive TCC

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1 month 1 week ago #56173 by CoraBell
Oh Alan, these are great. I am trying not to go to any appts alone so I have someone hearing things - and having this is great. Thank you!!

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1 month 1 week ago - 1 month 1 week ago #56172 by Alan
CoraBell,

I am also adding an attachment of pre-op questions that saved I some years ago. There are too many and some don't apply to every situation so just use as it fits.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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1 month 1 week ago - 1 month 1 week ago #56171 by Alan
Corabell,

Welcome. I simply wanted acknowledge that someone sees your post as sometimes it will take a day or two! And, please don't freak out as all of us are survivors, there IS hope!

First, what I remember from other people's posts the Brigham & Young Women's hospital should have you in good hands. I am sure someone else will also respond on this as I am in Texas and not that familiar beyond that. Second, I have not had to have a cystectomy but many here have and am sure others will chime in. While it is a very serious surgery T2 staging gives you a real good chance of ridding all of this cancer. I am bookmarking (our hyperlink I notice doesn't activate so copy and paste) a very good site with the 3 different diversions done. It will get you up to speed: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion .

Beyond that, ask away with other questions as you go. I am also glad you are quitting smoking as it has been one of the causes for about 60% of bladder cancers. Perhaps the best advice I can give is take one day at a time as that is all we can really control. This is treatable and beatable!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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