Now what?

Alice ... oh my gosh...you're so young to be going through all this. First of all call the hospital where they did the TURB's and ask for the discharge summary including the pathology report....its yours...they can readily pull it up on the computer. That will tell you your stage and grade of tumor/tumors. I'm very confused about your treatment...you are saying chemo but i wonder if you're not getting BCG treatments. Those should not debilitate you however. If you've had really bad reaction to BCG there are other treatments available to you. If they are using some sort of intravesical chemo you need to know what the heck it is and why you're so sick. It seems noone is talking to you about this which is not right. And really i do understand the denial part....when i was diagnosed all i had was gross hematura..lots of blood but no pain....i didn't hurt anywhere....its easy to be in denial if you feel no pain. Blessings on your OB nurse....she's your angel...fill out that paper work.....and shame on that insurance company but sometimes a second call to a different person might get a different result. I've been fighting my secondary insurance for a year and a half and finally got the right person who straightened my situation out.
I do know you have a right to be treated regardless of your financial situation.
Please please get your reports and tell us exactly what they say and what your treatments have been so far. We'll guide you along hopefully the right pathway.
It wouldn't hurt to email your congressmen either.
Let us hear from you soon....we won't let you fall thru the cracks.......Pat

Thank you so much for your concern, Rosemary. I will be sure to let you know if and when I receive some type of help. At the moment, the local hospital has accepted me until August 17, 2007, for any treatment needed. This is when my OB nurse called the new Urologist that will come here and do my Cysto and what ever else needs to be done. I am sure he will also recommend the Chemo after this round since I am already showing blood in the urine, but don't know if I will have enough time through the hospital to get it done since my cysto is scheduled for July 18th. Only time will tell.

Also, I will be sure to stay focused this time and start asking for the reports on the stage and grade of cancer in which I am dealing with.

Rosemary, you are right, I do have a special one I need to care for and I am not ready to let that go. He is also one that has kept me going. Thank you so much for your support and concern.

I want you to know that I think you do such a Wonderful job on this forum and would like to thank you personally. Thank you, Rosemary, for being the great and caring person that you are.

My Best Wishes to you and all that are dealing with any type of cancer.

God Bless!

Alice

Alice,

I sure hope that you can get these insurance issues resolved in some way. Please do not let paperwork overwhelm you. Please find out what your stage and grade is. Do not fall through the cracks. You have a little one who is depending on you.

Your BC friend,
Rosemary

Hello again, Pat.

Pat, embarrassingly to say, I cannot remember what kind of treatment they used in me. Nothing was done for the very first year, but cystos and removals. I switched to a second opinion in which immediately removed more and put me on a 6 week treatment of chemo. Came back the following 3 month check up in which was the same answer as every other check up that it was new.

At first, I was on the school insurance when I was teaching. I was sick so often that we agreed I would resign. I was hoping I would recover from my very first surgery during the summer and return the following season, but it took me longer than that. I then went on the state insurance, Kansas, for lower income families. I am raising my 7 year old grandson in which I have had since he was 18 months old. They had helped me with everything. When on the insurance, a person has to renew every year. This last time I was to renew, it was also the time for my second chemo treatment. When I renewed and told them this, they denied me saying that I make too much money for a family of one, in which is only allowed to make 245.00 a month. I told them I am a family of two, (in which is allowed to make $1400.00 a month)I have Legal Guardianship of my grandson. They asked me if I adopted him, I told them no, I could not afford it. They said, well then you are not considered a family of two. I then asked them how was I accepted the first time I applied, and she replied, I don't know why you were even ever accepted.

I have been filling out documents after documents to find any help for treatment. If it wasn't for my OB nurse, I would have just given up. I was ready for the cancer to just take its toll, but she called me and called me insisting I get the papers filled out, get this done and get that done, in which she helped me with almost all of it. I am still waiting to see if I qualify for any disabilities or help. I really am afraid to see any of the reports because I just don't know what else I will do if I am turned down.

Sorry Pat and all, I didn't mean to burden you with my problems when everyone else has their own to deal with, but I do appreciate you taking the time to read it and for your understanding.

Phew! I feel a little better now. Thank you so much.

Alice

Alice...i was just making sure they were doing a resection of the new tumors when they went in which it seems they are doing. TURB stands for trans urethral resection of the bladder. Do you have your pathology reports and do you know the stage and grade of the tumors? I suspect the uro might have given you Mitomycin after your first resection...or did you get your one treatment at a later date...if so that would be probably BCG.
what part of the country are you in? Is it that you have no insurance or just bad insurance? Pat

Pat, They have sent the tumor/tumors in for biopsy each time. For some reason, I just didn't pay attention to what grade it was. I feel I have been going through denial about the cancer, but now that I have finally released a few held in emotions and joined this board, it is now time to get involved instead of just letting the doctors do their job. It really didn't help though having the URO that I did. He just was not very helpful AT ALL. Ignored almost all of my questions. I am praying that this next one will have a lot better bed side manner because where I live, they come from out of town. Very few URO's close by.

Hope all is well for you and here is to wishing you a Great Monday!

Alice