I guess I\'m \"An anomaly\"

11 years 4 months ago #43587 by DougG
Replied by DougG on topic I guess I\'m \"An anomaly\"
Chelsiaann,

I too would like to welcome you to the forum. Wow. Your doctor sure gave you good advice to get the insurance and come back. Sounds like you are in good hands with Mayo. Hopefully others will read your post soon who can add their own stories. I am a caregiver, but wanted to welcome you. Your attitude sounds great and you do have youth on your side. Wishing you the best. All the unknowns do tend to send up the anxiety. I can definately relate to that. Please join us on the Sunday evening chat at 8 PM EST if you have time.

Anita

Anita
Forum Moderator
Caregiver

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11 years 4 months ago - 11 years 4 months ago #43575 by CatherineH
Replied by CatherineH on topic I guess I\'m \"An anomaly\"
Hello chelsiaann... Welcome to the forum and I'm so sorry to have to meet you under these circumstances. Few things are more isolating than to be told your diagnosis is an "anomaly" and finding little information or data to help understand your condition. It's scary and overwhelming to try to take it all in.

With that being said... you have taken charge of your situation and I think made a great choice going to Mayo for treatment. There are several women on here who opted for the IP, and I'm sure you'll get some feedback from some of them. Generally, it seems the neobladder doesn't work as well for women as it does for men and there are varying opinions about that.

With it being a holiday weekend, replies might be a bit slower coming in. I haven't had experience with chemo or cystectomy, so I can't provide any personal info there. I do want you to know you are now part of our community and members will be here for you throughout your preparation and surgery... and after that, as long as you need or want to hang out with us.

Best wishes... Catherine

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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11 years 4 months ago #43574 by chelsiaann
I guess I\'m \"An anomaly\" was created by chelsiaann
It's been about a month since I received my BC diagnosis, and the doctors at Mayo said that I'm practically "an anomaly." I'm a 35 year old female with squamous cell carcinoma of the bladder. I had a cystoscopy -- a portion of the tumor removed -- and I begin H-VAC chemotherapy in two weeks. I'm quite nervous about the H-VAC chemo, as the doctors said that it was a difficult regimen for many people to undergo. I'm going to try to do the full 12 week/4 cycle treatment without dropping down to the lesser chemo treatment. I want to fight hard no matter what it takes.

The information I've gotten is all kinds of conflicting and confusing. Perhaps it's been in my body about nine months. I started seeing blood in my urine in June and, as I've read many others experienced, I was treated with antibiotics. I didn't have insurance at the time and went to see an OBGYN next who sent me off to the urologist. The urologist said "Leave. Get insurance. Come back when you have it because you'll have a CT, then a surgery, whether it's a tumor or a stone."

Fast forward, I just came home from Mayo with all this information (which is awesome) and a big decision to make over the next couple of months regarding whether I'll get an IP or a neobladder. Mayo told me they see a couple of people with BC like mine in a month, but usually not women my age. They asked me if I'd spent any time in Egypt or worked around chemical dyes, neither of which I've experienced. I was raised in the NW United States. I did, however, smoke when I was a teenager until I was about 31. But, I'm beyond reasons now.

I'm super optimistic, though I have terrible anxiety and I'm often sick to my stomach especially in the mornings (pretty sure it's emotional). I feel pretty good despite having gone to Mayo and already having a surgery and having been told that what I'm up against is going to be pretty difficult. I don't know if it's just that it really hasn't sunk in yet, or if I'm actually doing well, considering.

I guess I'm wanting to know if there is anyone out there who has the same cancer I have. I'm interested in knowing if anyone has experienced HVAC and what I should expect (even though I know it's different for everyone). And, of course, I want to know about experiences with the IP and neobladder.

I'm also hoping for community and a little help while I go through this.
Thanks for taking the time to read. Looking forward to hearing from some people.

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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