9 years 10 months ago - 9 years 10 months ago#29586by pemquid
I'm curious why you feel "there's so much more to worry about" with BLC than other cancers? I, for one, am less worried now about BLC than I would be if I had almost any other kind of cancer (except perhaps low grade skin cancer, which is common, tends to recur, and is non fatal). Yes,the rate of recurrence of BLC is very high, but with vigilant screening (cysto every 3 months) you can catch the tumors early. Yes, tumors sometimes progress or are higher grade, but for most people, tumors are low grade and do not progress. On the BLC board here, we are much more apt to hear from people who are coping with higher grade, more invasive BLC. People who are going though life with low grade tumors and little in the way of recurrence are much less apt to seek (or give) advice here, except when they are first diagnosed or if their condition changes (e.g., they have a recurrence or progression that requires a different treatment approach). Call them the "silent majority," perhaps.
Believe it or not, you really can get used to having had a bladder tumors removed and having cystos every 3 months, and a lot of people hardly think about it in between check-ups. (I do know that some people have said they have "taken a vacation" from reading postings here because it allows them not to ruminate and to go on their daily lives without the constant reminder of BLC.)
Wishing you and all many more "all clears."
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.
I have a feeling it would be great to hear the rest of that poem.
There seems to be so much more to worry about with bladder cancer compared to others. I know this is all new to me and I am not in bad shape since it was found so early, but you are all making me aware of how important it is to be on top of things.
My newest frustration right now is with my insurance and getting a second opinion. Never expected this fight.
How it spreads when and where it appears. How best to find it in time? All questions i think we all have. This is my third
cancer. Bone in '92, lung '99, Bladder now. Any connection? No one can say. Worked with a lot of chemicals and some radioactive mat'l.??? who knows? chemo for bone cancer a cause for bladder cancer? Dr. say likely. But if you don't stop bone cancer you don't need to worry about others!
I guess the point i'm trying to make is the only thing you can really do for prevention is to have Dr. that know your history,and are aggresive in their approach. But i have also found that you yourself must be the driver of your own bus for early detection. Early detection is everything!!! I myself have been very lucky at how things showed up. Sometimes intuition, twice blood. BE aggressive, i can't stress this enough!
AS for those late night time worries of return. I think we all been there too. A lot for me the first time! I learned to play mind games. A line in a poem i wrote on the subject;"Busy your mind with pleasure or fantasy"
My 2 additional cents worth. Had a CT scan and the radiologist said "no tumors visible in urinary tract". My uro read the scan as it was transmitted and had read it before he saw me and said "they have missed a small shadow in my bladder". How thorough and good is my guy! He was goiung to scope me either way. Of course he found it. He even checked the pathology work after my TURB. I was questioning the grade (grade 3)as he thought I would be a grade 1 based on what he usually found on a papillary tumor. He beat me to the punch guessing I was going to ask about grade 3 and he already had checked the slides himself! Net/net the CT scan at least was relevant.
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.
I know I am a little late to this talk, but I just came back from my Dr. and had this very same talk.
Every 3 months I have a thorough blood and urine test and a Chest Xray. I asked why the chest Xray and he said "All" blood passes through the lungs and this is the normal place for cancer to spread. I have been living with my neo for 17 months and will have my first CT scan next month. Because of the contained nature of my cancer, the Dr. is not extremely worried that the cancer has spread. He has assured me that he will aggressivly monitor this every 3 months. I have mentioned on this site that I have had great concern that cancer is sneaky. I am afraid of what and where it may pop up again. My Dr. is very optomistic, but ever vigilent. He also said that if I was to have cancer somewhere else, it would be very aggressive and we would have to attack it quick and hard.
But for now, he is pleased with the tests and still wants to see me at 3 month intervals.
But, back in my mind, this question still haunts my thoughts, late at night when the mind games start to play their little game.
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]
Vgau, I had a ct scan and they said it was neg but a week later had a cysto and they found five tumors, so much for ct scans. So much for faith in test. I had it come back at one year and now clean for two, and I have not had any bcg. Rocky