I asked my specialist the same question: "Why not just take the darn thing out - the bladder?" He looked at me like I had 6 heads and said, "Because that would be a major life-changing situation to deal with."
This is the protocol we all have to accept and live with. I'm just starting out myself and I am dealing with just one day at a time. That's really all any of us have anyway. Like my husband told me he could be hit by a car.
I know you must have lots of questions. Are you going to a cancer center that offers various supports like nutrition, counselling, etc.? Right now I'm just hooked in with the doctor specialist who is part of MD Anderson Cancer Center. For now they have offered their phone to me 24 hours a day if I need to call.
Just remember no question is too stupid or dumb even if they look at us like we have six heads. We teach them a lot too through our questions.
I was hoping that YOUR diagnosis would be MY diagnosis. But I am going to have chemo and my bladder removed and I am scared, really scared. Neither one of our situations are good. Even though having the cystoscopy done every few months is scary at least if anything does come back you will catch it early enough to be removed. And I understand that this type of diagnosis never gets far from our minds. I wish I had some words of encouragement for you because this is such a stressful situation for all of us. I saw a psychologist oncologist this morning to help me get through this, maybe you could see one also.
I know exactly how you feel...sort of like a Mac Truck hit you in the back! I joke (only sort of) that I didn't even know I had a bladder until this happened. So much has happened so fast that it is hard to adapt, but you will.
First, the GOOD things....your GP was right on it...too often with women, even with hysterectomy, they just shrug it off. Yours got you to a urologist right away which is GREAT. Second, the type of bladder cancer that you have, a low grade papillary form, is the best news you could have IF you are going to have bladder cancer.
The not-so-good...it IS bladder cancer. And your urologist was absolutely correct, it has a bad habit of sometimes coming back. But not always. The usual protocol is for cystoscopy every three months for two years, then every six months until five years have passed and then annually forever. But please remember, IT DOES NOT ALWAYS REOCCUR! I have now gone 9 years without. Yes, you do get a bit nervous when the exam time rolls around, but you really tend to forget about it in between. My next exam is marked on the calendar for April 3, and yes, I am starting to think about it, but not nearly the way I did 9 years ago.
You really do not want to have your bladder removed unless it is absolutely necessary....and it may never happen for you. This is truly MAJOR surgery with a long recovery and adaptation time. People do live full lives without a bladder but it is not a walk-in-the-park. And no competent urologist would agree to this when it is most likely completely unnecessary.
IF it returns several times, your urologist would most likely recommend a series of BCG treatments. This is immunotherapy, not traditional chemo which patients with many other types of cancer undergo. It is very do-able
(I had high grade and so I had BCG treatments.) But you are a very long way from even needing to think about this possibility.
Right now you need to step back and follow the recommendations of your urologist. The cystoscopic exams are not fun, but not bad either. They are well worth the peace of mind of knowing that the cancer is NOT there. You are allowed to feel sorry for yourself and go outside where no one will be bothered and SCREAM. This is not what you wanted, but you are in good hands and have a really good shot at beating this.
And any time you want to let off steam, or ask questions, or just find someone to lean on we are here for you. We have all been where you are today and WE DO UNDERSTAND how you feel.
Wishing you all the best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Seen my GP about blood in my urine (have always had issues with my colon & stomach), but the blood in my urine was something really new (hyst. 17 years ago, so not the cause of the blood), which set me to be scared....that was on 1-9-2017....On 1-17-2017 First appointment with Urologist, he scheduled doing cystoscope on 2-27-2017 which showed a tumor (to me it looked like a mushroom moving back & forth in liquid), which he scheduled surgery on 2-1-2017....wow my life was beginning to change even more.....On 2-27-2017 was the results are Non-invasive low grade papillary urothelial carcinoma (The Urologist said this kind of cancer grows like weeds--so for this first year he will check every 3 months --(If there are 2-3 times of it regrowing then he will try the chemo in the bladder)....The Urologist will see me on 4-18-2017 for the test on how my bladder is working (like how the muscles are working & such)....And then 5-24-2017 another cystocope (to see if it has regrown)....Just really hate the thought that every 3 months I've got to worry, stress & especially worry even more that it has regrown (yes I worry over everything), and yes I've been told not to think of it & don't stress for nothing (which is easy for someone to say - especially when they don't have to deal with it)...Have other medical issues & this just adds to the meltdown of my life.....My other thought is why have to go through this every 3 months - just remove my bladder so the cancer is gone & it has no chance of getting any where else??? Am I wrong for felling this way & where do I go from here...what have I got to look forward to???