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Brand new here, with a stupid question.

9 years 11 months ago #30277 by GKLINE
Wow! 27 years old! That is too young to join this club! We may have to change the initiation rules for this, Don't you think?

I am sorry to welcome you to this group but we are an optomistic bunch. Here is the protocol for this site.......THERE IS NONE! Anything goes, even ranting and raving! Give good attention to Pat, she knows the WHERE and WHO. Look up Mike's Chart for Bladder cancer, this will show what happens and what to do.

The rest of us are here to pass on personal experience and to let you know, you are not alone. This is a rather large group and for every procedure we have a "been there, done that" person. They will chime in to coach you along and give you a "pick me up" when you need it.

The best news from your origional post was you uro did NOT spend a long time misdiagnosing you bladder cancer as just a condition related to a kidney stone. He was on top of his game there. But, cancer is cancer, and you have to get to the right people to get rid of it.

As for those in your family who treat you like glass. Let them in on the whole process. They want to help, and the are as afraid as you. You will find a much closer relationship with them if you TALK about it. It is also OK to get the Queen treatment for a couple of days.... You deserve it!
"How the heck you got this" I can't help with.... but turn yourself around and look FORWARD to .... How do I get rid of it and How do I live my life from now on!


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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9 years 11 months ago #30262 by Moonerj
Hi Starr

I was diagnosed in 2006 with noninvasive low grade bladder cancer. I had a couple of tumor recurrences early on which were also low grade. I had several treatments of BCG and have now been cancer free 27 months.
You have received great advice from the members here. They convinced me of the need for a 2nd opinion at a major cancer center a few years ago. My 2nd opinion concurred with my Uro, which was great.
This gave me confidence in my treatment plan and my Uro, and took a lot of the "what if" out of my mind.
I wish you all the best,

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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9 years 11 months ago - 9 years 11 months ago #30258 by Humpy
Follow Pat & Mike's advice. Local Uro's are into making money, not saving lives, like university hospitals or cancer centers are. This should be taken seriously, but no need to freak out.
You have found a great place, with great members who genuinely care.
Welcome to the family.

p.s. there is no such thing as a stupid question.......

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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9 years 11 months ago - 9 years 11 months ago #30257 by Patricia
If they're stalling you call The Patient Advocate Foundation...they'll work thru the snags for you.

P.S. I actually had my second TURB done two weeks after the first one with my second opinion at Memorial Sloan. I'm very grateful i did as my local uro left all the margins.

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9 years 11 months ago #30255 by mmc

On getting moved to your husband's insurance, does he have an HR department that can help get this pushed through? Due to HIPPA, they should have to take you on because there is a change in status (your job and your loss of coverage).

Some companies have advocates that push this stuff through and know the right names of the people to escalate to so that there is no gap in covereage.

We changed insurance in the middle of the year through my employer and I had to spend a lot of time on the phone (my wife had surgery the day of the change) because paperwork had not gone through.

If they don't have HR or an advocate (broker) that can do it, then you will want to spend some time on the phone making this happen.

Pat's advice on getting that re-TURBT in 6 weeks and getting a 2nd opinion is right on the money. Best to be sure.


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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9 years 11 months ago #30253 by StarraeAday1
Thank you very much! I've bookmarked his information. I appreciate you sharing. :)

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