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42yrs, high grade, aggressive T2 - what are my odds?

2 years 4 months ago #53320 by _substandard
Thanks guys for the encouragement!

I'll follow your advice and ask for a second opinion. Yet I think my clinic (Kaiser, Southern California) is doing a good job so far.

For most, it's a mental thing to get over with and thanks for all your feedback I'm feeling more relaxed about it.

I'll keep you posted on my progress. Next up is a class about the upcoming chemotherapy ;)
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2 years 4 months ago #53316 by Jack R
Stan,
(shortened from subSTANdard)

Welcome to the forum.

Statistics can be a funny thing. Unless they are fully stated, they are meaningless. You mention a doctor citing a 50% survival at 5 years. That number seems rather out of date; treatment keeps changing for the better. One on one, we have NO idea of any individuals chances, but the statistics are important.

See the website below, where the 5 year, Stage 2 survival rate is 70%. (Looking back 6 years, the rate was about 64%)

http://www.cancer.net/cancer-types/bladder-cancer/statistics

I dislike hearing a 50% number - I have found doctors to use it to mean, "either you do or you don't", rather than describing an actual percent of likelihood of a positive result.

Also, you note, "It seems I caught a rather rare version of bladder cancer", which you described as "high grade, aggressive T2". That description states the SAME information 3 times. Simply calling it Stage 2 says everything. All the unnecessary adjectives just makes it sound worse.

Stage 2 is described as- T2a or T2b, N0, M0, stage II means that the cancer has grown into the muscle layer of the bladder wall. It has not grown through the muscle layer into the fatty tissue surrounding the bladder. In this bladder cancer stage, the disease has not spread to lymph nodes or distant sites.

Almost half of all bladder cancers are first diagnosed at Stage 2.

I think it is fair to say that most of us here took a blow to the guts when the word Cancer was said by the doctor. It takes a little while to sort things out. give yourself some to digest all of this. If you need help coping, ask your doctor and expect a response that works for you. Try to turn away from the negative feelings and look toward the chance to beat this disease.

Others have suggested getting a second opinion; I agree.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis
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2 years 4 months ago #53314 by cltyxx
Hi there,

Similar experience, like you, I found blood in my urine last December and first treated as infection and then was referred to Urologist in early Feb. I had TURBT in early April but unfortunately, my biopsy results were not conclusive. Have to wait maybe another week or two to go through 2nd TURBT.
I found this forum in mid April and got a lot of valuable information here. And I also appreciate the encourage words from many folks here.

I came across a book the other day, "Changing Normal", written by Marilu Henner/Michael Brown. Pretty interesting one. You would see the guy, Michael Brown, had many similar questions/thoughts and his experience may shed some lights for us.

But again, everyone's different. And have you got 2nd opinion on your treatment from another Urologist? The surgery like RC is not reversible, so make sure the diagnosis and else was correct.
Btw, I am 46 yrs old and just like you, still look forward to the long journey ahead. After I heard "C" word from my urologist back in March, I started to understand that life is so short and it is up to you, yourself on how to live it.

Good luck and share your stories, you are not alone here.

Cystoscopy - 03/23/17
TURBT - 04/06/17
Waiting for 2nd TURBT
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2 years 4 months ago - 2 years 4 months ago #53310 by Alan
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.

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2 years 4 months ago #53309 by _substandard
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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2 years 4 months ago #53305 by Cynthia
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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