New to Website New Diagnosis

16 years 10 months ago #5425 by wendy
Replied by wendy on topic New to Website New Diagnosis
Rick wrote, "My respect and awe is with you for battling breast cancer for seven years. Is the “fear” that cancer will come back always with you? " >

I wouldn't say I've been battling cancer for 7 years, as I've been cancer free since surgery/radiation and all the drugs. I've known others who have seriously battled and fought back much worse things than what I have been through, it's all relative.

>"Is there ever a time that a person with bladder cancer does not have cancer on their mind?<"

Yes, of course. But usually not for too long, priorities change. Outlooks change. The constant follow ups keep you humble

Your idea of giving your doctor a bonus is a good one, but I bet your long term, cancer free survival will make him happy enough. It must be a tough job, oncology.

Take care,
Wendy

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16 years 10 months ago #5423 by Patricia
Replied by Patricia on topic New to Website New Diagnosis
Hi Rick......I'm guessing you're going to be just fine after cystectomy...your bladder cancer has not invaded the muscle so chances are your nodes will also be clean. Make sure you have a surgeon who does nerve sparing cystectomy. Do you know how many of these your surgeon has done? Thats important. You want someone who does this on a regular basis .
Its a tough surgery...but you're young. You'll bounce back quickly. 8 weeks might be pushing it a bit...you've got to train your new neo-bladder.
Pat

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16 years 10 months ago #5422 by RAH
Replied by RAH on topic New to Website New Diagnosis
Wendy,
I am not upset with the stats. I thank you for providing them in the first place. Since I do not have any pain or discomfort, having cancer at this point seems surreal. I came to this site to help educate myself. I wrote to the sites to validate feelings, get opinions, and hear stories from people that are in like situations.
The interesting thing is two months ago I thought, “I will live another 35 years”. All of a sudden here I have a cancer that looks at 10 years living as being a positive benchmark; it hit me like a brick wall. Don’t get me wrong. If the option is two years versus ten years I would take the ten years in a heartbeat.

My respect and awe is with you for battling breast cancer for seven years. Is the “fear” that cancer will come back always with you?
You say to concentrate on the first two years. I do know I will have to change my lifestyle and go in for check ups. I was hoping that I can only concentrate on the first eight weeks. Then I can go back to work and live a normal life. Is there ever a time that a person with bladder cancer does not have cancer on their mind?

I am counting on the fact there are treatments that will work. I will let the doctor know I will give him a big bonus 15 years from now if I am still around. Maybe that will be motivation to insure he helps me to select the ones that do work.

Take Care
Rick

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16 years 10 months ago #5412 by wendy
Replied by wendy on topic New to Website New Diagnosis
Ooooh, I"m sorry for making you upset with those stats! Please forgive me. I had mistakenly assumed you'd come across much dire numbers. All things being relative in the world of cancer, 78% at 10 years for a tumor that would surely kill without any treatment is good. I guess I'm jaded by now, and 50-50 seems good to me, given that's the odds any of us have of making it through a given day. When I read the stats for stage IIIC breast cancer (what I had), it said 20% at two years. My doctor-who treated me as a person and not a number-gave the prognosis as 90% at ten years. I had my doubts, but here I am 7+ years out and cancer free.

Concentrate on the first two years, because those are the most important for prognosis, if you make two years clean your chance of getting old and dying in your sleep becomes much, much better. And don't forget there are treatments out there that work.

All the best,
Wendy

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16 years 10 months ago #5382 by RAH
Replied by RAH on topic New to Website New Diagnosis
Thanks all for your perspective on your personal battles and triumphs. Your courage, perseverance, and fight are awe inspiring to me.

Joe, reading about all the challenges that are ahead of me as I go through surgery, recovery and survival; it looks daunting. I can not put into my mind how tough it will be. I do have a similar attitude as you described. I will not quit not only because I want to beat this cancer, but I want to enjoy my life and the life of my family and friends. I have always thought I would have done anything for my family. Now will be the time to step up and prove it.

Holly, thanks for sharing the idea of the “just in case box”. My brother in-law (46 years old) who just loss his wife to Cancer told me and a friend just the other day that if all of us could do something that would be valued, it would be to write down things about your love one. He was hardly ever away from his wife so there were very few letters written. The ones he does have, he re-reads over and over again.
I tell my kids stories of my childhood all the time. Last year I started writing these stories down. I will now make sure I write stories about my kids and wife too.

Wendy, when I go from thinking I will live to be a really old man, to 78% chance of surviving 10 years; it still seems like a delayed death sentence. However, it is easy for me to focus on the battle and not the end. The kids had been looking at the 10 years and started calculating what I could miss out in their life. We now look at what I will be enjoying in their current and near future life. This is has been the difference in them not worrying. We have spent allot of time lately talking about my daughter’s high school graduation in June, My son’s college baseball games and classes, my other son’s track and transition to high school next year, and my two young girls trying to teach me some clapping and singing routines. It is allot easier when this time is not considered “dad’s Cancer time”. Oh and by the way, my wife loves that the chores she traditionally does, are done by me before she can get to them.

Rick

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16 years 10 months ago #5378 by wendy
Replied by wendy on topic New to Website New Diagnosis
Hi Rick,

Tell your kids that bladder cancer has the best long term survival stats of just about all cancers. You are getting your bladder out before it invades the muscle...according to the best studies out there, this gives a higher than 78% 10 year survival! blcwebcafe.org/cystectomy.asp

I was 7 when my father got advanced cancer but I did not know what that meant. These days children hear the word cancer and probably relate it to death. When you are going through your surgery be sure to explain to them that you are going to be fine. While you're at it, tell your older kids the same, it's almost a guarantee...you will be fine.

You have much to live for that's for sure!
Wendy

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