My Diagnosis and Family History of Bladder Cancer
I was lucky as a retired RN to recognize an early sign - painless passage of blood in urine - the evening of my 67th birthday last March (2020). By the following Friday (the 13th!), I was given the diagnosis after cystoscopy by my urologist.
NED after treatment with mitomycin c
TURBT and mitomycin-c installation at time of surgery and a full 6 weeks to recover from the surgery & treatment and get back to some semblance of normal. My urologist guesstimated the papillary tumor had likely been growing for 3 years.
Then, waiting for the 1st post-op cystoscopy in early July to check for return - N.E.D...(no evidence of disease, so far, although he warned me that with cell progression, it can return quickly with a vengeance) - that’s the best result (being N.E.D. at follow-up) you can hope for because of the continual monitoring afterwards - now and for the rest of my life. Could change at any time.
My brother and grandfather had bladder cancer
I must have a genetic/familial predisposition to my carcinoma - my older brother (age 70) has had 2 episodes of bladder cancer with surgery. My grandfather (an Englishman/WWI veteran who experienced being gassed in France during the war) died of bladder cancer two months after I was born in 1953...he was only 58. He was treated with cobalt radiation therapy - from the letter my grandmother wrote my mother at his death in ‘53, the cobalt therapy was quite brutal. I have 7 other siblings who now will need to be vigilant, along with my brother and I continuing under routine monitoring.
Worries that COVID would suspend my surgery
Spring 2020 diagnosis and surgery was complicated by COVID...rumors of surgeries being suspended for “elective” cancer surgery had me holding my breath until the day of surgery arrived (bladder cancer surgery is not an “elective” - it is a necessary surgery!). I was “lucky” that the hospital did not suspend those surgeries.
Now, living with heightened vigilance, hope and fingers crossed that I remain N.E.D. is the best I can hope for.
We need better testing and funding for bladder cancer research
A routine, dependable urine/bladder cancer screening test needs to be developed - and performed for all Medicare patients! And, more research into curing bladder cancer, instead of progression of the cells from low grade to high grade cancers needs to be done - NOW! More $ to research!
Have you felt misunderstood as a person living with bladder cancer?