I think its normal to worry however I really try to remain positive and hopeful of a clear cysto.
I have had 5 cystoscopies and not once have I been tumour free. I have multiple tumours usually.
Once I start BCG, I really try to concentrate on the BCG eating up any little tumours that may want to start. Then the 3 month period to wait for the next cysto, I just try to put it out of my mind. As the cysto date approaches, I do find myself getting on edge but like someone else mentioned, this is for life. All my life I will be seeing a urologist and having cystos done. So whats a girl to do? I just live with it and keep movin'. I REALLY, REALLY, want to fight to not loose my bladder.
Hi Pemquid...i couldn't PM you..so here's the article by Lamm that i was telling you about...look at question #3 and his answer about only holding the BCG for 30mins on maintenance.
I had an initial small papillary TCC tumor (low grade, non invasive) in 2006, then a recurrence (2 tiny ones, same type, stage and grade) in 2008. Finished 6 weeks of BCG in mid September, and go for cystoscopy the end of October, then maintenance BCG in December. I'm by nature an optimistic person, and though I was disappointed in the recurrence, I was glad it was the same type, and that there was a relatively long interval between the first diagnosis and the recurrence. As others have said, in spite of high recurrence rate, blc is very treatable.
In some ways, I try to think of it the way I would low grade skin cancer, though the checkups are certainly more unpleasant! After my first diagnosis and treatment, I generally went in for my 3-month check-ups with the assumption that there would NOT be a recurrence, and of course the more all-clear checkups I had, the more optimistic I got. Because of this optimism, I was perhaps more upset at the recurrence than I would have been if I had been more pessimistic. However, I've adjusted to the "new reality," and am resigned to several years of BCG maintenance. I had been looking forward to shifting to 6-month check-ups, but as someone else said, better to have to put up with frequent check-ups and to sty on top of any recurrences.
When I first met my urologist, he did say we would get to know each other very well, and he wasn't kidding!
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.
After my initial dx, I had 1 tumor free cysto. I was back in for 2 turbs at 3 month intervals after my first one. Since then I have had 1 mitomycin installation and 6 weeks of BCG + 3 maintenance rounds. In between I have had biopsies of ureters, renal cavities, and prostate - all involving stenting and restenting. Fortunately, I have been tumor free since January 2007, but I always think the next cysto will reveal a recurrence - especially when I feel twinges every once in a while.
There is no guarantee that we will not have recurrences, but be safe in the knowledge that the checkups are designed to catch any that do happen. Which is better, not knowing or catching a recurrence early? I consider myself lucky that I get a chance to develop a relationship with a doctor who gets to know me as well. My uro even recommended my current GP to me. My experience has also taught me to be more empathetic to employees (I am a principal at a middle school and deal with employee relation issues).
My next cysto is Oct 20 and I have to say I worry as much as the next person. My BP goes up a notch just sitting in the waiting room, so I cannot say don't worry, but I ultimately know it is all for the best. I won't ever be worry free, but will approach each visit in stride - I already know what will happen if I do get a recurrence and know where to get info/second opinion if there is a progression (hope this doesn't happen). Inbetween cystos, I live like I didn't have cancer.
Hope this helps.
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
I really do not know anyone else personally who has blc, so I have only my own story to share. I have had non-invasive, low-grade blc since 2001, with quite a few recurrances. I was clear at one point for about 3 years. I now think of myself as having a chronic illness. Other people have arthritis or neck pain or migraines or diabetes. I know women with breast cancer and ovarian cancer who live with the disease. I just have to deal with this. So far, it's been treatable, and I'm thankful for that. However, I just received a bad biopsy report the other day. I now have a high grade tumor and CIS. Sigh. But to put this in perspective, I think there are so many people who have a lot worse things going on. I'm just going to get all the support I can, do what I have to do, and live each day to the fullest! Best wishes to no recurrances. But don't live in fear!
As you say Alin ,we best if live every day as we don't have any worried ,I have a friend who first diagnosed with BC with grade 2 on 1990 and he still without recurrence even he is still smoking.so every one has his case . I have one recurrence after one year from my first diagnose which was on November 2005and so far all clear.
my best wishes to all not have any recurrence.