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RE: My husband is having much pain- others?

5 years 7 months ago #48327 by GKLINE
I must get this straight.
You are NOT thinking of using natural means as the only plan of action are you?
You are still going to have the bladder removed aren't you?

I have nothing against natural forms of care, but, as you can see, clean living didn't stop the cancer from coming and I am one of those survivors of bladder removal that is still around six years after surgery. A survivor as they say.

You are getting great advice from Johns Hopkins and they know their stuff.
If you are still on track with them for Radical Systectomy then my work is done here.

I know this is all a big shock, and you are just trying to put things in perspective, but I assure you the journey is worth the fight.

Thanks for being here and best of luck to you both. I feel for you both.


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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5 years 7 months ago #48284 by Jayne
Hello Lelly- first off, I am sorry you were diagnosed with a rare bladder cancer. Sadly, so was Mick. He has carcinosarcoma. It is the rarest of the rare- and quite agressive. That said, like you, we remain optomistic. We are doing the traditional and the eastern route. Our motto? All faith, no fear. I wish you and all the folk on this site much good health!
The following user(s) said Thank You: Lelly

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5 years 7 months ago #48280 by Lelly
I just read this thread this morning and feel compelled to share my experience. Your words about your children hit home with me. I have three children, all grown, and three beautiful grand boys with my first granddaughter due next month. They are the loves of my life and what pains me the most is having to share this news with them. It's easy to imagine the worst. I was very recently diagnosed with a rare type of bladder cancer also - adenocarcinoma - after noticing blood in my urine. Unlike your husband, I have no pain and hope that you'll discover that his is nerve related. This journey has been awful and wonderful at the same time. I am scared and sad, as are you and your husband, but overwhelmed at the love and support that has been pouring my way. My career, teaching, is a passion that has consumed my life the past few years and the cancer is helping me step back and gain a more balanced perspective. While taking a (hopefully short) respite from work, I've had the opportunity to spend more time with family and friends. In addition, I've been taking up some pastimes that I've always wanted to get to but didn't have the time. Each day, I look at the good things that are coming my way and trust that for everything there is a time and reason. I will keep you and your husband in my thoughts as we venture this period concurrently.

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5 years 7 months ago #48277 by rakz105
Here's hoping that you will find comfort in this time of trial. My heart goes for you and your whole family.
Hugs & prayers,


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5 years 7 months ago #48188 by Jannie
Hi all. Thanks for your helpful posts. It made the week of waiting better knowing there were caring folk out there! We got some tough news on Wednesday. Mick was diagnosed with a very rare bladder cancer called Carcinosarcoma. We had hoped for better news- but are working hard to make lemonade from the little lemons. We know it is muscle invasive- but will receive exact staging on Tuesday morning when we meet with his surgeon. Mick will have his bladder and prostrate removed soon-likely next month after he heals from the TURBT.

We have so many people holding us close to their hearts. So many people praying, dropping by food, coming over to cheer us up, joking and laughing to help us keep our load light, watching our dogs when we needed to be at the hospital, talking to our kids to cheer them on, shoveling our snow- wow! The world is so good.

Mick and I discovered this book called "Radical Remission" last night. I downloaded on my Nook and stayed up most the night reading. We are going to follow the 9 suggested steps with aims of reversing this cancer. (organic foods, meditation, joy-filled living etc.) It is a rare one indeed- just 1-3% of the folks get this neoplasm. Mick decided this diagnosis, nor its projected prognosis will define him. I like that! We are walking on this journey side by side. Something inside of me is confident my guy can get full remission. 25 years ago he walked fire- yep, blazing hot coals and his mind over matter resulted in no injury. My strong, solid, grounded, funny, kind and loving guy and I are going to walk coals toward radical remission. People do recover. People do beat the odds. I wish all of you well in your journey and am sending you special thoughts to beat the odds. Blessings, Jannie

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5 years 8 months ago #48131 by Fishtown Boy
Hello Jannie,

I am very sorry to hear about Mick.

When I discovered I had something wrong,there was Blood in Urine,first.

Then PAIN,discomfort. Dr. gave me antibiotics it subsided a bit,then pain came back.
Took a almost month to figure out it was cancer.

I never really smoked or had cancer in my family.

But I did work with Arsenic contaminated metals in the 80's into 1998. Ended up one of my coworkers got it too.

I don't know what to say except you both are in my thoughts.

Radical Cystectomy
Massachusetts General Hospital
Nov. 6,2009

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