HI MY NAME IS BILL AGE 50 on 12-29-05 i pissed blood so i went too the dr that is when this all began on 2-20-06 i had tur surgery it still hurts too pee but the blood stoped two days ago my tumor was nonaieasive but aggresive so i start bcg on 4-11-06 hope this works.. well good luck to you laura. :'
Live in la.ca
5 great grandkids
I know your medical system is different there. If I were you I would sign up and post on the Web Café list server. There are people that live in Canada that are members and they might be able to help you with information. I do remember it being discussed in the past. There is no reason to reinvent the wheel unless you have to.
This is the link again
Wow Cynthia, thanks so muh for your reply. I have decided to call my urologist today and tell him how I am feeling. I think that this infection is kicking my bladders behind and that my bladder is just exhausted. I've noted the resources you mentioned. Good luck and thank you again. Laura (ps. I'm in Canada & I'm not sure if we have bladder cancer centers here, but I am going to find out).
I am sorry you are having so much trouble. I have had three TURB's and several biopsies and to tell you the truth they were all different. It depends on the location and the extent of what they do. No one's experience can be compared to another’s your situation is unique to you. For example some need stints others have multiple tumors and there are many other variables. My first was the worst it was the deepest and the largest of my tumors and took me a few weeks to get over. Have you talked to your doctor about the pain you are experiencing? If you have not it really sounds like you should. If you have and you feel that you are not being heard or if you are not getting an answer that gives you some peace of mind, have you thought of a second opinion?
It is always advisable if you hear the C word to have a second opinion you do this for a few different reasons. The reading of the pathology reports is a subjective thing. In other words it is dependent on the experience and background of the person doing the reading. So you want your slides double checked at a center of bladder cancer excellence that does a great deal of it. If you have not talked to an Urologist that specializes in bladder cancer it could be one of the most important things you can do in your situation. Doing this does not mean you change doctors it just means that you can go forward knowing that your bladder cancer was staged and graded correctly and that the treatment path you take is the best for your situation.
You are not being a wimp here and you are right to trust your body. My father always said if it doesn’t feel right it probably isn't. Remember you have been through a lot physically and emotionally and need to give yourself time to rest and regroup.
I will give you some links that might be of help to you.
If you go half way down the page you will find a list of major centers of excellence in the US.
The following is a link to join the Bladder Cancer Web Café list server it is a group over 500 bladder cancer survivors that share information and support. I think you would find this recourse invaluable as I have. If I where you I would sign up for the list and post the question you have asked here and see what you hear back.
This is a link to the Bladder Cancer Advocacy Network it will offer some good links, information and also has a link to a site that offers a twice weekly on line support chat for bladder cancer survivors.
This is a new group that is for woman with bladder cancer
Hi, I'm 37 y.o. female who is new to all this and has been diagnosed with low grade bladder cancer. I've quit smoking and anything else (caffine, etc) that could remotely be a bad thing for my poor little bladder.
My surgery had some kind of complications and I was in the hosp for almost a week and then went in the next week losing a fair amount of blood. My surgery was on the 9th of Feb.
Today is the 27th of Feb and although I did go back to work last week early on.... I am now on bedrest. Is this normal? I feel so so frustrated that I am not feeling better. My bladder still hurts and strangely my back where my kidneys would probably be has a lot of sharp pain. I'm really really tired and can't handle more than a couple of hours of activity in a day at this point.
Shouldn't I be better by now?
Did anyone actually go in for a turp and go to work a few days later (which was what expected to do). Did other people take time to recover? Like two or three weeks? I really feel like a wimp here. I guess everyone is different and I'm just trying to trust my body. Last time I was this exhausted it was because I was losing blood (I think it's because I got an infection).
Thanks and I'd appreciate *any* feeback on recovery. Laura