nightmare ---- there are other organizations promoting Bladder Cancer Awareness. Take a look at
Someone here mentioned it once, but I can't find that post now. If it is inappropriate to post this, moderators may feel free to remove it.
I guess that has been a concern of mine. They put a stent in after my surgery 3 weeks ago. I've had a few bladder spasms but been able to work through it. My dr. Is going to start me on treatment as this has been my second occurrence. So far it has been low grade. Thanks every one for your comments. I feel like I'm starting to understand more.
I'm no medical person, but my impression is that there's been a fair amount of progress in the last 20 years in treating bladder cancer. I think the immune-stimulating treatments (BCG, mitomyicin) have been increasingly refined and work well in certain kinds of instances. i think newer diagnostic procedures are also helpful (e.g., FISH, which I've never had). I've not had to have a stent, but did seem to have a very "reactive" bladder in terms of spasms for the first couple of years when I had 2 TURBTs and of course the 3-month cystoscopies. The Dr.'s office gave me anti-spasm medication to take before my check-ups, plus I took over the counter pain meds; both seemed to really help, and eventually I got to the point where the discomfort was really minimal. My innards got used to all the prodding I guess!
In terms of bladder sparing, I'm not sure there's much new that could logically be done. Once the cancer is invasive, the bladder has to come out, and I don't foresee that changing. Unless there's metastasis, I think the survival rate after that is very good. New types of reconstruction have been developed, when before the only alternative was the external bag.
I do agree wholeheartedly that bladder cancer doesn't get the respect it deserves form the general public. I know I shouldn't get annoyed, but the constant fund-raising and drum-beating about breast cancer gets a little old.
Hope things look up for you.
P.S. My dad had bladder cancer too, with one recurrence, back in the late 1970s-early 1980s. He lived 10 more years (age 84) with no more blc recurrence and died of something unrelated to the bladder cancer.
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
Thank you all for your responses. You are incredibly sanguine about the trials you have been through. I guess I don't have a great attitude, and maybe that's why the 4 different urologists have all been nasty and short with me---a mere woman who has quesitons---then again, maybe not. Pain, infection, lack of sleep (I have to sleep 8 to 10 hours a night-just to function), serious operations---simply do not seem like living--- especially, after seeing my father go through this---and dying a year later. Just the results of the first TURBT in Apil kept me in the hospital almost week due to the intolerable spasms in my kidney/ureter. Then I was out of work for 4 weeks from exhaustion due to lack of sleep. Not living. Travel, which is my job-- is out of the question.
The most depressing thing of all is that they have made almost no progress in long term survival,new medication, and retention of the bladder in the 20 years since my father died---they just changed the name of the drugs, and the order they're given, and came up with another type of bladder.
It's a disgrace when you realize 1/2 million people have this disease--no fashion shows, walks, runs, parades, makeovers....nada. No specials by
Dr. Oz or a feature segment on The Doctors, because it just isn't fashionable or sexy to be peeing all over yourself. Nightmare doesn't begin to describe it.....again. Happy both my parents are gone, they could never live through this again.
I have never seen anything on stents and the risk of transference. I have been cancer free for almost ten years after having several stents. After my first and very extensive TURBT a catheter was not placed and due to blood clots and inflammation it became an emergence when I could not urinate. You are right there is a risk of infection the longer an in dwelling catheter is left in. But the benefit of having one placed can outweigh the risk in some cases. If you are prone to infections you might discuss an antibiotic as a precaution. You should of course write down all of your questions and go over them with your health care team.
Keep us updated.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society