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Any words of wisdom?

7 months 3 weeks ago #57180 by Firstborn
Hi my name is Ann, my mom had a very aggressive stage 4 bladder cancer when we found it. The news wasn’t good for her but I would wisely suggest it’s ok to do research on terminology to be informed . That took a lot of time from us . If your already good with that there isn’t anything wrong with researching for your benefit with treatment options just make sure to talk with doctors with what you find out. I would have like to have brought my mom here to Houston , Texas I have been told it is one of the best places for cancer. But she wasn’t able to travel. Cancer of any kind is such an individual thing. Because one didn’t work for someone I wouldn’t see it as a negative exctaly. Enjoy life as much as you can, stay informed , ask questions, and it’s ok to look into other types of treatments. From my research as well it’s disheartening but everyone is really different with their cancer . Be hopeful , pray and don’t give up. Will be praying for you though this. Stay informed with correct information and take it from there. You got this!

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7 months 3 weeks ago #57169 by Cynthia
KC, Sorry you have to be here but welcome. At 48 I found myself in your shoes, and here I am that was in 2004. Now the road was littered with panic attaches, surgery and lots of others rocks and boulders. OK here are your words of wisdom. If your goal is to get to the other side of cancer and go on with life this is what I told myself. When I woke up from surgery I said to myself over and over this is one day closer to being well. They told me to get up and get moving as soon as I could after surgery so I did and it was hard in the first days. But it was one day closer to getting well again. And then one day I was dancing at a friends wedding and doing the things I had always done and I was past the storm. It’s OK to be scared you would be an idiot if you weren’t. I always find it amusing when someone tells me how brave cancer survivors are. I always think the same thing being brave is often not haveing a choice, its not like you are given a third choice. Keep your minds eye on where you are going not where you are at the moment.
KC do you know what type or types of diversion you are eligible for? Ask questions we will try to answer. Welcome to our online family we are all just trying to help each other and share the journey.

Good night try to get some rest.

PS try to stay off website that scare the stuffing out of you they many times have nothing to do with your personal reality.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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7 months 3 weeks ago #57168 by Jack R
KC2009

Welcome to the forum. Sorry you had a need to come here. The net and Doctor Google are often unhelpful. At this site there are no doctors, just others at some point on the BC journey learning and helping based on their own experiences.

From the info you provided, AND the fact that you had Chemo soon after diagnosis AND you are set for a RC, I am making the assumption that you were diagnosed initially with invasive bladder cancer.

Unfortunately, when BC is first found invasive one of the "Gold Standard" (I hate that term) treatments is to try to reduce the tumor load with chemotherapy then remove the bladder and build an alternate method of urination. It appears to me that you are on that track. By the numbers, under that set of circumstances, going with Radical Cystectomy has the best chance of beating the disease. We all hope, at least at first, to find another way to beat BC.

Alan has provided two files for you. One deals with choices of a diversion (how you urinate after an RC, the other with questions for your doctor/surgeon. DO ask LOTS of questions of the doctors. Make sure that you understand what is proposed and how it fit into your life.

On this forum there are many people who have had an RC and continue to lead normal lives, and even more for whom the decision is a little (or a long) way ahead in the future. I believe that it helps us adjust to the possibility of an RC when we have a good long time to consider alternatives - before the cancer goes invasive - again, it seem that you have moved toward an RC in a short time.

Bottom line - don't let the complainers and fear mongers on the net scare or dissuade you from making a decision that may offer your best chance. Sometimes it IS necessary to accept a less than ideal choice. Read the boards on this site for personal success stories of life after RC.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
Until next scope :) :)

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7 months 3 weeks ago - 7 months 3 weeks ago #57163 by Alan
KC2009,

Welcome. Take the deep breath as all on this board share your concerns. Some have had to have cystectomies, some not. There are many success stories as this is treatable and beatable. I am one of the fortunate that haven't had to.

1st, as with any serious issue along life's journey it is one day at a time. You do have some time to research and plan the next step. I am linking (our hyperlink doesn't highlight so copy and paste) a good read of the 3 main diversions: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

Along those lines. You want a real expert on this. A URO that has been doing these for several years and at the rate of 25-35+ a year of that particular diversion. It is rigorous. You want a major center that sees a lot of bladder cancer....so many practices do a lot of prostate issues. This IS different. I understand Emory in Atlanta is very good. There are many that post here that have one or the other and hopefully some will see whatever you have chosen and can answer specific questions. I am also attaching a questionnaire (see below) that someone posted years ago. Not all of the questions are applicable to each situation so pick and choose.

Please keep posting as questions arise. We all learn from each other.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Attachments:

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7 months 3 weeks ago #57161 by KC2009
Hi,
I am new to this site. I have been diagnosed with bladder cancer recently. I have done three cycles of two different types of chemo. Now it its time for surgery in six weeks. I made the mistake of googling bladder cancer and did not like what I seen. Wish I had not looked at the sites. I also spoke with a local person who went through this three years ago. He was all negative. I go to Atlanta tomorrow to see the surgeon and find out what is going to happen. I am having reservations about doing anything now. Truthfully, I am scared to death now.

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