TCC Stage TA grade II papillary tumor
I had a history of painless blood in urine with passing of tissue starting at in 1995 – very sporadic. PCP did urinalysis and prescribed antibiotics. After blood in urine became more frequent – March 2001 and then April 2001, started to doubt diagnosis. (The urinalysis never showed signs of an infection.) Scheduled appt with PCP myself. When she asked why I was so concerned, I said I was worried about cancer. She said it would not present this way. Just to shut me up, she gave me a urine collections kit. I turned in a sample in May 2001, and received a phone call from her 1 1/2 weeks later. She said sorry to have to tell you that you have cancer. She gave me the urologists name and appt time, and said “good luck” and hung up. Only heard from her again when she did not want to approve my consultation with a urological oncologist, approved by my health insurance, but not from her “tertiary care” list, meaning her group would not be totally reimbursed by Tufts HMO,my healthcare. TUR 6/13, uneventful. Oncologist at MGH concurred with treatment. Tiny recurrence at next cysto. TUR even easier. Two tiny tumors, suggestive of grade I. Oncologist requested original path report to be re-done to establish if lamina propria involved. Results showed only mucosa, not lamina involved. Started 6 weeks BCG, no problems. Urologist did not suggest maintenance BCG, citing lack of approved schedule protocol. Oncologist agreed with Dr. Lamm’s protocol, so started maintenance. Have had three clear cystos since. Repeat cysto 10/24. Hope for same good word! Worst parts of experience – thinking of my two sons without a mother, and realizing my PCP does not care about me as a person at all. Have since changed PCP’s. Best part, finding out how wonderful my husband, family, friends, and even strangers, are! I have felt the prayers of others supporting me through this. Also, I am awed by the bravery of all you who have shared your stories. You are all truly inspiring! Keep up the fight!
10/24 Cysto was all clear again! Thank God! Start BCG maintenance, 3 weekly installations, next week.
