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Considering a trip to MD Anderson - questions

7 years 7 months ago #37644 by mmc
You're right George.
I thought about doing 1, 2, and then ... 1000 but then I thought that might be too much. I was posting it from my phone while in line a restaurant so I hurried up and sent it before making that change because it was my turn to order.

I agree that it is way further down the list. How far down is probably different for everybody. For me, it was pretty far down.
:)

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 7 months ago #37639 by GKLINE
I have to disagree with Mike on one Point (I disagree VERY rarely with Mike)

I put save the baldder waaaaaaaaaaaaaay farther down on the scale. I hold no feelings for that old bladder. It was kind of like the lunar module...... did its job... needed to be ejected so we could get home (hence, on with living) It did it's job and now we need to move on to the business of being cancer free and living.

I'm sorry Mike, but 2 things that occupy way too much angst in a patient are "damn the body, save the bladder" and "incontinence"
They are such a small price to pay for Life.

George

ps. have neobladder, go racing. Watkins Glen May 18th. :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh:

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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7 years 7 months ago #37637 by jimswife
Bambi, I am so glad you are moving forward with greatest of speed with your husbands BC. When I came here I was one who needed a slap up the side of the head not so much being in denial as in shock. I am so very grateful to all who shook me and told me what needed to be done. They validated what we knew needed to be done when I needed it most. When you receive the diagnosis of BC most of us do go numb and feel pretty overwhelmed and it seems that due to the lack of information out there we aren't sure where to turn. This site/forum is a font of important information and is a must go to when given that diagnosis. What we choose to do with the information we gather here remains our choice but it is some of the very best available. Wishing you the best in your journey.

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7 years 7 months ago - 7 years 7 months ago #37622 by mmc
My opinion on fun is that is what you do with the rest of your life (more of both) once you get the bladder cancer taken care of. I was really, really glad when I found this site back when I had bladder cancer (both times) and there were people here who had been there--done that and they were willing to share.

It helped me greatly and that's the reason I keep coming back here to try to share what I know and why I keep researching what I can on bladder cancer.

Otherwise, I've been cured for 2.5 years now and I would have just put it all behind me. This is really my only connection to bladder cancer. Well, this site an my annual follow up check. All the people coming here for help and to help others is what makes it a great site (again-in My Humble Opinion (IMHO)).

All happy, happy all the time doesn't cut it. People come here in shock and confused and in search of real answers. Sometimes they need a slap upside the head (to get out of denial) and sometimes they need somebody to tell them that they are not alone in all of this.

Bladder cancer isn't fun. It is certainly ok to high five each other when we get an "all clear" check up but mainly this site about people who care helping people who need it with good information and guidance about how to get the best possible treatment that will save their lives.

Priority should be (IMHO):
1. Get best treatment with highest chance of cure
2. Get best treatment with highest chance of cure
3. Save the bladder (optional).
I don't have a bladder but I'm doing great.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 7 months ago #37621 by Bambi
Thanks Pat-
I appreciate knowing where to go to find the articles. I will take some time later today to look over all that. I find myself a little at loose ends today so that would be good. And we need to sit down and make a list of questions. Somewhere in this house is a tape recorder, too and that is a great idea. I am a fast writer, but those darn emotions interfere with my notetaking.
I think you have a great site and I thank my lucky stars to have found it.
Bambi

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7 years 7 months ago #37620 by Patricia
Bambi,
When you find time go to the "articles of interest" and look up info on re-turbs, second opinions, and understaging, and T1G3 bladder cancer. All have good opinions from great resources.
I'm very proud of this site as it isn't "Facebook"..it really answers the difficult questions and we've been trained to back up our opinions with facts. There's a lot out there on the internet on statistics and that can scare the bejesus out of you...ignore them. So many variables go into those stats.
I was on another site and would quote medline articles or factual studies and i got one response that said , "You sure like to quote your articles"...and that really made me take a step back. They are very social and really don't want to hear the hard stuff and even become resentful of it.
We all wanted to hold on to our bladders trust me and sometimes there is no rhyme or reason as to why someone with T1 disease ends up with metastatic disease when its still contained in the bladder or so they say. Or why my invasive T2 behaved and went nowhere YET..8 l/2 yrs later. The research is ongoing and the subset of variables and nanograms are continually being studied but its still a crap game. The larger bladder cancer centers will have the research team and access to others research so you play your odds and go to one of the best bladder cancer centers with the best surgeon.
And if you want to have some fun...go to chit chat...there's a category for that but its not in Invasive.
You've done some good work so far...don't go with the one who says what you want them to say. Write it down or bring a recorder. Let us know. And my best to you both.
pat

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