Hello and help

12 years 8 months ago #38535 by gaynor
Replied by gaynor on topic Hello and help
Thanks
All your posts seem so positive which has to be a good thing.Pat no one has suggested going anywhere other than my local hospital for treatment so I will look into that.I have a repeat biopsy scheduled for Thursday so I am hoping things will be clearer after that.
At the moment it all feels pretty confusing and as if its happening to someone else
Gay

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12 years 8 months ago #38510 by mmc
Replied by mmc on topic Hello and help
Gay,

So sorry to hear about your recent diagnosis. It is certainly a shock to each of us when we first get diagnosed. Like George and Pat, I also had my bladder removed. Mine was in October of 2008 and I am doing just fine. I have a neobladder as a replacement for my old crappy bladder.

Hopefully, you can get to a top doctor and get a re-TURBT (as Pat mentioned). In the meantime, it would probably be good to explore this site in the invasive section of the forum and see the stories of others and get a feel for all of this.

We are here for you! You are NOT alone. Lots of us have been faced this before you and we want to help you. Ask any questions that come to mind.

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 8 months ago #38505 by CatherineH
Replied by CatherineH on topic Hello and help
Thanks Pat. I have edited my post accordingly.

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 8 months ago #38504 by Patricia
Replied by Patricia on topic Hello and help
Catherine,
T2 is not a fairly early stage. It is an invasive stage.
And the difference is you had urachal involvement which is a lot different in the way it grows than transitional cell carcinoma.
After re-reading what Gay had to say it sounds like pathology isn't back on the sample/samples yet. I hope that it is T1 and can be treated with BCG.
pat

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12 years 8 months ago - 12 years 8 months ago #38503 by CatherineH
Replied by CatherineH on topic Hello and help
Hello Gay... First congratulations on your beautiful new baby. It's OK to let those tears out, and as George mentioned, you, your husband, and your doctor must now be a fearsome team against your bladder cancer. I hope your consultant pairs you with a top specialist and as Pat mentioned, there are some very good facilities there. We are here to help you navigate some very scary waters by being available to share experiences and information as you discuss your case with your medical team, or just to lend a caring ear if you need to talk.

A sidenote to Pat: The local pathologist could not confirm my T1/T2 diagnosis after the initial TURBT. The report stated that it was at least invasive pT1 and the base of the tumor was suspicious for muscle invasion pT2 but due to extensive fulguration of the specimen, it could not be positively confirmed.

After my surgery, Vanderbilt path report confirmed it as T2a because a residual .6 cm tumor was found in the wall section that was resected. Pretty obvious at that point!

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 8 months ago #38502 by Patricia
Replied by Patricia on topic Hello and help
Hi Gay,
I know how you feel...well no i don't..I know how i felt when i was diagnosed..something akin to what George said. Just read an article that the North East in the UK has the best Cancer outcomes
www.journallive.co.uk/north-east-news/todays-news/2011/04/22/survey-reveals-cancer-patients-in-north-east-have-best-hospital-experience-61634-28564094/
Bladder cancer very specific and your consult should refer you to one of the top hospitals that really specialize in the field. And they know which ones they are. I wish i were more familiar with the UK but we've had many from there who have been treated at The Royal Marsden, The Christie, and my mind just went blank on the 3rd.
I'm a bit concerned as to why the pathology did not seem to specify stage? I mean its either into the muscle or its not and if the surgeon got a good enough sample down to the muscle they would know if it were T1 or T2. Protocol here in the states is to have a second TURB (which i'm assuming you had) within 2 to 6 weeks after the first. This is usually a second opinion with a highly specialized surgeon and will determine if all the original tumor was removed and margins clean. Please try to get with the best consultant that you can...pull whatever strings possible.
I am almost 9 yrs out with T2 invasive bladder cancer and i had a top surgeon perform the radical cystectomy. I have what is called an Indiana Pouch with a naval stoma and i catherize about 4 times a day. Its easy and no leakage once it is trained.
But thats all stuff to ask about once you find the right surgeon and determine where you are as treatment could vary if T1G3.
Wishing you the best.
pat

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