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42yrs, high grade, aggressive T2 – what are my odds?
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Substandard,
1st you are standard or above standard with me. Anyone having to fight the big C is a friend, we are just sorry you joined us but, glad you found us.
None of us are doctors so take any thread for what it is. Feel free to ask anything at anytime on any subject. This includes rants etc, we all have had them.
Next subject. Statistics are just….. stats. Almost meaningless as everyone is different. I would even suspect that 50% number is better than that. At any rate focus on being the good 50%+!!!
My only other thought is to be sure you have a URO that sees and does a LOT of bladder cancer. Too many see mostly prostatic cancers. For surgery you want a URO that has done many of these 50+ a year. You might even consider a quick second opinion although once into the muscle you do need to act quickly.
Keep posting as you need, someone will have “I’ve been there and done that” to help. One day at a time!
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. -
Dear Cynthia,
Many thanks for your kind and encouraging words.
The question “what I would do differently if I knew?” reminded me of the key concepts of mindfulness and Eckhart Tolle’s “the power of now”. I also believe in the law of attraction so your message was the powerful reminder I needed.Yet I’m naturally concerned regarding the aggressive and high stage character of my cancer and wonder there is anything else that I should know or do other than what I’m told in the clinic. It seems I caught a rather rare version of bladder cancer and I can’t find much specific information about its implications on the internet.
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Hello from the other side. At 48 I had the same words said to me that was in 2004. I lead a normal life and am now 60 and about to become a first time grandmother. Statistics are a funny thing they differ from one study to the next and from person to person. This is how I look at them. They are made up of all kinds of people, in good health and bad, getting good treatment or none or even those who give up and some that don’t. And if you are smart you hedge your bets. You get the best treatment, you make sure you keep yourself in as good of shape as you can during treatment, and most important of all you don’t give up. I remember telling a therapist that the hardest thing for me was not knowing what the further held. She asked me what I would do different if I knew. I thought of the things I would do differently if I knew the end was near and decided to live that way if I could since none of us know. Something we all should do anyway. It was not an easy road but I always felt that I was one day closer to wellness as I went forward through surgeries and treatments. We are here and we will be here for you every step of the way if you wish to be part of our community.
PS: If you are not at a center and doctor that does a high volume of bladder cancer it is always a good idea to get a second opinion if you can as a reality check also statistics show that outcomes are better a centers of excellence.
If you have questions we are always happy to share our experiences.
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
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