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Fighting a Rare Bladder Cancer/Seeking Community

6 years 8 months ago #43637 by chelsiaann
First of all, I just really want to thank you for the words "You ARE going to live!"
No one has said that to me yet. Everyone looks at me with some scrinched up faces here in Helena, Montana. At Mayo they looked so much more optimistic. Here it just seems like they are really not excited about what's coming for me.

I described it as standing in front of an oncoming freight train. Except I'm not going to get hit and die, I'm going to cling to the bottom and get drug a few miles, maybe lose a leg or something.

I have no idea what this is going to be like. I had an echo-cardiogram today, on Monday they'll put in a port/cath and on Wednesday I have my first check-in and dose, then Thursday they are going to hit me with Methotrexate/Cisplatin. I hear these two are the real a-holes. (Can I curse in these forums or...? Is that not preferred?)

Anyway. Ups and downs. I have a cold right now which is making me feel a lot weaker than I want to be going into this, but I'm happy that I have a really awesome partner to walk me through this difficult times. Without her, well, I don't know what I'd do.

I have to say, I'm leaning towards the belly-button cath at this point, even though a neobladder sounds so cool.

Anyway, thanks for the love, everyone.

Symptomatic: July 2012
Diagnosed: October 2012, Squamous Cell Carcinoma, muscle invasive, stage II or III
Surgery Date: April 10th, 2013 (Indiana Pouch)

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6 years 8 months ago - 6 years 8 months ago #43632 by CatherineH
Hello Chelsiaann... just wanted to say that I will be keeping you in my thoughts as time for your chemo approaches. Please let us know how you are doing and post any questions that come up along the way.

Catherine

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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6 years 8 months ago #43598 by shihtzudaddy
Chelsia you have been lucky enough to find this forum and the WONDERFUL people here. They have helped us with the hard questions and the little questions that we just don't know but the doctor assumes we know. This is a wonderful group and you are in wonderful hands.

You will get information and understanding here that you can't get anywhere else. My husband, Toby, was diagnosed with CIS in June. It's aggresive cancer but very treatable. He's doing the BCG treatments and we still have lots of questions but we're trying now to ride it out and not ask to many questions at this point.

You just keep posting and asking questions. People will chime in now that the holidays are over and people get back in the routine.

Take care,
Kathy

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6 years 8 months ago - 6 years 8 months ago #43573 by GKLINE
You are indeed on the right forum!!!

Many will chime in

Just wanted to get a quick message to you .

You ARE going to Live!

If you were looking for a "community" You came to the right place. Most everyone here has been through this cancer thing to a greater or lesser Physical degree. But we have all experienced the same degree of emotional wrangling when we heard the news; "You have cancer (I always make it small to show how little respect I have for it)

Some of the people here can give you technical help, and some can help with the "community" part of recovery. But above all else...... we know how much "attitude" has to do with recovery and living!

A big part of this group, is our never ending need to know that life does go on after cancer and we share these stories and also cheer for every "good checkup" report from the Dr.

I am truly sorry to welcome you to this site. But I am so glad you found us and don't have to go through this alone.

George

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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6 years 8 months ago #43572 by chelsiaann
This is my first post and I'm two weeks out from beginning chemo.
I've been diagnosed with a rare bladder cancer: squamous cell carcinoma of either d2 or d3 staging. I'll undergo 12 weeks of MVAC, take a month to recover, have a full hysterectomy and bladder removal, and I'm considering either an "Indiana" pouch or a neobladder. I'll be getting my chemo treatment at home in Montana as directed by Mayo and going back to Mayo for surgical procedures.

My name is Chelsia. I'm a 35 year old female. Yep, I was a smoker for about 23 years. I quit in 2008. Other than that, they are really not sure how I got this thing, as it's only seen in Egypt?!

I'd assume that I'm not the only one out there with this since my Mayo doctors said they see a few a month, but typically in much older patients, thus they are treating my case aggressively because apparently my body can take it -- ie: I'm healthy. I'm not necessarily looking for other people who have had this type of cancer, but that would be awesome.

I'm looking to connect with community, have folks to talk to about their experiences, and not rely solely on my partner and primary caregiver. I do have a tremendous support network through distant friends and a smaller pool where I now live, but I'm hoping that I find some community here.

It's been a long time since I participated in a forum (2002, maybe?), so I'm entering back into this weird flash-back realm where my community is a little more condensed.

I think I'm in the right forum.

Symptomatic: July 2012
Diagnosed: October 2012, Squamous Cell Carcinoma, muscle invasive, stage II or III
Surgery Date: April 10th, 2013 (Indiana Pouch)

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