Newly Diagnosed...Bag? Pouch?, Neobladder?

Wow..Linda..you must have that "other" insurance company....I can't even imagine an insurance policy that does not cover one of the NCI or NCCN.org Cancer centers...Obama, Hillary, and McCain are you listening? Actually Mayo in Arizona does seem to have a top team for bladder cancer.....www.mayoclinic.org/bladder-cancer/
There is also an advocacy hotline that may be able to help?? You could try
www.patientadvocate.org/
I know when i was first diagnosed I made the decision to go to a top center in Memorial Sloan...at that time they were in negotiations with my insurance carrier and I would have had to pay 30% of all costs but i was willing to do that by hook or crook to get the best care and best results. As it turned out they did work the deal and I was 90% covered.
I wish you the best....i think the only requirement to be hired by an Insurance Carrier is to be able to say "NO"........be persistent. Pat

Thank you Pat and Zach,

I appreciate both your comments. I have already researched and found, and made an appointment for next week with the best local urologist available within my insurance plan(who comes highly recommended and is supposed to be very current with the latest procedures and techniques.

I have also started the process with the Mayo clinic here in Scottsdale Arizona. Although they are outside of my insurance network, if they are the best option for me, I may end up paying a lot more out of pocket, but in the long run if its worth it, its worth it. I'll figure out how to pay for it somehow.

I went directly to my insurance provider and asked them which cancer treatment centers are covered under my plan and unfortunately, there are none! That is just wrong!!

At this point I agree with both of you, and my gut tells me this will not be the doctor with whom I continue on with.

On we go.....


Thanks,
Linda

Linda, this is the best, most important advice you can get at this stage of the game.

Do not assume your local urologist is on top of every option you're facing. Please get an opinion from a serious bladder cancer physician at a major cancer facility. I can't tell you how happy I am that I did just that.

And welcome.

Zach

Hi Linda...sorry to hear about the T2 diagnosis. I had exactly the same diagnosis 5 l/2 yrs ago. Since so frequently gross hematura happens so quickly without any other symptoms your brain doesn't kick in quite as quickly as it should regarding options. I for one had never heard of bladder cancer...i'm sure it existed but certainly not in the forefront of cancers. If a urologist recommends only the external bag its a good bet thats the only kind he knows how to do. I actually live in a large major city and i'm the only Indiana pouch walking around .. its the more complicated one to do...and the uro's here just don't see many women with blc and truthfully they've got their hands full with prostate cancer...a big cash cow!!
First of all my advise is to head to a major cancer facility and a major uro/surgeon who sees bladder cancer all the time. This is a very specialized area believe me. If you let me know where you are located i can give you some recommendations. Hopefully you have a great insurance plan.
As for the neobladder for women...biggest problem is hypercontinence...we women have a shorter urethra then men and its just not always successful at hook-up. My choice for various reasons was the Indiana Pouch with a navel stoma. You can read up on the different pouches on the home page.
Please feel free to ask any questions...Pat

Greetings all,

Well, got the news earlier this week. Bladder cancer was initially suspected in January when I ended up in the emergency room after passing very large blood clots in my urine. A week earlier, I had gone to see my doctor regarding a little bit of blood in my urine and she sent off the customary urine sample to the lab and started me on antibiotics. Before those results had come back, however, things appeared to get a little more urgent and I ended up in the emergency room.

A CT scan revealed the culprit to be a 4cm mass in my bladder. A urine analysis and cystoscopy at the urologist office two weeks later confirmed. I have bladder cancer.

The tumor was removed by an additional cysoscopy proceedure last week and the pathology report says it has invaded the muscle at the T2 Stage and my urologist says the bladder has to go. Not the news I was hoping to hear but, lets move on.

This is the part I'm struggling with right now. It would seem my particular urologist would prefer to set me up with the stoma and external bag option...really wasn't very forthcoming with the other options that might be available and has set me up to talk to the stoma therapy folks at the local hospital wound center. He was very discouraging with regard to the other two diversion possibilities. His opinion of the pouch was that it was too hard to take care of, and the neobladder meant a lifetime of nightly incontinence. I've since encounterd a lot of articles that contradict this opinon.

Things just don't quite feel right to me, I am an active 50 year old divorced woman in otherwise good health. If an external bag is truly is the only/best option for me I will certainly embrace it and learn to live with it, however, I am on the road to a second, and maybe a third opinion. I went in to see my primary care doctor (a woman) yesterday and she refered me to another highly recommended urologist whom I will see next week.

Although I don't know this for sure, it seems based on the stage and location of my tumor, that I may be a good candidate for the neobladder and certainly would consider a pouch over the external bag. Sadly, these things have to be decided on soon. Ultimately, I will go with the best medical advice (as long as it seems trustworthy!), however, I would really appreciate some real world opinons on these options from those of you who have gone before as this is all quite overwhelming to me right now. :-\

Thanks, and bless you all!
Linda