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

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

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 That number seems rather out of date; treatment keeps changing for the better.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%)

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

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

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.