You are in the right place. Sorry you need to be here. Doug was diagnosed at age 44; he has had 6 reoccurances, had BCG treatments, AND has been cancer free for 5 years and 9 months!
How do we deal with it? Like others have said, one day at a time. We have continued to live our lives and enjoy life to the fullest...but that doesn't mean we're complacent in our attitude towards bladder cancer. Doug still goes for check ups every 6 months (and keeps his appointments religiously).
We'll be thinking of you September 12.
Sounds like you have a good plan and a good head on your shoulders.
Recurrence is a bummer. I've only had one, and it was at the 2-year mark, just when I was looking forward to being able to shift to check-ups every 6 months instead of every 3. Even thought I knew the statistics, i.e., that bladder cancer has the highest recurrence rare of any cancer, I still wasn't prepared. My reaction was to get mad. Other than my father having bladder cancer (he was a smoker), I had no known risk factors. My tumors both times were low grade, but uro recommended BCG because of the recurrence. I successfully completed the full course of BCG and have now been all clear for 6 years. I concur with the other posters urging you to get a second opinion, just for your peace of mind if nothing else. I'm quite a bit older than you, and had a pretty straightforward situation so didn't seek a formal second opinion, but would if I were in your shoes. (I did get an informal opinion about BCG from my cousin who's a radiologist specializing in kidney and urinary tract. He concurred that it would be a good idea to do it because, as he phrased it, the recurrence is a sign "your bladder wants to grow tumors" Best of luck in your journey!
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.
One day at a time! I still remember the words "you have high grade bladder cancer". I concluded pretty quickly that it happened and all I could do was go forward as much as I could. Everyone deals with it differently so there is no right or wrong. I never smoked and drank very little alcohol. The sad thing is being the #5 cancer that so little attention and time are spent on this cancer.
You to will get through this. As others have posted, be sure you have a good URO and second opinions are good. Be sure your URO does a LOT of BC as so many see and do mostly prostatic cancer. This is a special disease with a lot of twists.
Keep posting that is what this board is for!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Yes you are definitely in the right place, among those who have "been there, done that." George has shared his valuable insight with you...he is a trooper!
Most of us will never know what caused our bladder cancer. One day some sneaky cell just got out of line and started a tumor! The day I heard the "cancer" word was horrible. But now I am 6 years past diagnosis (2 TURB and the full BCG regime) and, so far, cancer-free.
You want to be sure that you are being treated at a place, and with a urologist, who has experience in the treatment of bladder cancer....one who sees many cases a year. Many urologists have a lot of experience with prostate issues...with bladder cancer, not so much. Since yours has returned, you may want to take a fresh look at it with a second opinion on where to go from here. If you are interested, there is a "Treatment Center Finder" on our home page, or you can tell us where you are located, geographically, and other members may have suggestions for you.
Many patients are somehow afraid that they may offend their current doctor when they seek a second opinion to review their situation. ANY REPUTABLE DOCTOR WOULD WELCOME A SECOND OPINION. The best result is that you find that all the recommendations your current uro is making are right on. The second best is that, if they are NOT, you are offered other options. You are the one in control of your future, and it is your responsibility to take charge of it. IF you decide on a second opinion, it might be a good idea to let the new expert do the TURB as a check.
The reason that I am recommending a second opinion in your case is that first, you are on the young side for a bladder cancer diagnosis and second, that it has returned. As you said, you need all the very best information and treatment as you will be dealing with this, hopefully, for at least 60 more years!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I was you 6 years ago.
Very scared and asked myself the same questions. This bc thing is a quandry. I lived a very active non smokers life and suddenly; WHAM! blood in the urine and bc.
The real reason we are here is.... Where do we go from here. We have bc. What do we do now?
I know this is a very scary time. Most people hear the word cancer and we have end of life thoughts.
But that is not gonna happen to you.
If you have the following things in your corner.
A Great Dr who specializes in bladder cancer
A Premier Facility that is expert in bladder cancer
A Plan of attack... TURB, TURB, BCG or bladder removal.
A Team... You, your wife, family, friends
A positive.. Go Get Em Attitude!
We are sorry you have to be here. But we are glad you are. We are here to listen, help, sympathize, and give you a good kick in the ass if needed.
But most of all we are here for you. Bc is nothing to be trifled with. It is usually a very agressive bastard that MUST remain inside the bladder.
Lets hope that you can have a TURB. And then a second TURB to see of they got it all. And then you can go on a BCG regimen to keep the cancer from coming back.
But, if you are advised that your(really good bc specialist Dr)baldder has to be removed............. dont take chances. Get it out!
As for the mental preparations? Thats going to be 50% of your recovery. A positive attitude will get you through this much easier than a poor attitude. First, keep your eyes on recovery. You must have the goal of getting through this. There are many many of us here who have been right where you are and are living normal lives post bc. You WILL be one of the survivors and we will cheer you at every checkup.
I know that you are freaked out right now. It is normal. We all were.... and we still are at times. The thing that keeps me on plane, is "my team"
My wife is my constant sounding board. She and I talk about everything. Our fears, hopes, and what we are going to do next. Always remember though, your team is going through the same disease as you are. They need to be in on everything. They can help you through the low times, but you have to help them too. I can assure you that there are some good things that can come out of this fight. My wife and I have never been closer than when we fought the good fight against bc. We continue to persevere together whenever we need a shoulder.
I hope this helps
Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.
08/08/08...RC neo bladder
New Man! [/size]