I'm on the same boat, secretary and nurse are inept. Can't change urologist cause I have six weeks left for ureter stent to be removed, and tomorrow will know pathology results although I was told it would be ready next week, not today.
I've started thinking that uncertainty from docs staff is harder to deal than with unknown bladder tumors.
You are the patient and its your right to be comfortable with your doctor and more even when facing serious health issues.
Now what do I do? Doc 2 is great, but the support staff isn't quite up to speed. I have sent three messages through the patient portal and have not heard back. In fact, I hand delivered my FMLA paperwork with the directive that they have the FML forms completed by May 8 - still no call. I am scheduled for my 2nd TURB on May 13, and am anxious because I have seen an increase in blood on the tissue and my urine is darker than normal. Remember my path report from Johns Hopkins shifted me from Tis to T1G3 (CIS). I am still working and plan to retire the second week of July, and my husband is planning to retire in December. I feel like I am racing against the clock, but not going anywhere. I am willing to give Doc 2 a chance, but his staff needs to join the team. I have considered changing doctors, again, but this time I will transfer to the University of Arizona's Cancer Center even though they don't have an bladder specialist to speak of - only prostate docs.
Any suggestions, thoughts, encouragements? I love my hometown - bueno bastante.
Glad that you have a doctor you feel comfortable with.
IF it comes to a cystectomy and you want an expert, you might check out the places in Phoenix I recommended,,,Mayo clinic or Dr. Lamm. If you could do Los Angeles, USC has one of the top sites for urological cancers in the country.
Here's hoping you won't need it!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Today was my second cysto after my 6th BCG treatment AND it was my first visit with the new urologist. I am so thrilled and happy I changed doctors. Dr. D is kind, patient, thorough, willing to listen to me....I can't rave enough about Dr. D. He is a godsend after the last gnarly urologist <shiver>.
Unfortunately, my CIS is back. The two big concerns are the location (bladder neck) of the CIS and the "failure" of BCG. UGH! Dr. D mentioned he had many "tricks in the bag" and would consider BCG with interferon. I am scheduled to have yet another CAT scan within the next week and before I have my second TURB which is to be scheduled sometime within the next few weeks.
Dr. D said the worse case scenario is my bladder would have to come out. If that is the case, would someone be willing to point me to a doctor/facility that performs cystectomies on a regular basis just in case I may need one. I would be willing to travel to California, even with their extreme drought, just to have someone who does cystectomies regularly <sigh>.
Doc M was not my advocate. However, with that said, he did treat me according to accepted nationally recognized protocol for bladder cancer. He also has a good reputation as a surgeon. It was his bedside manner that needed much improvement and alienated me. At best, he was abrasive.
Yes, I live in Tucson. Phoenix may be too far for me to travel at this stage of the game; I am transferring care to another URO within the same professional group. I have already dealt with this new doc (Doc D) and have come away satisfied with his care. Patients have rated him at worst 4 stars. Moreover, he is well versed in the treatment of bladder cancer. In fact, my GYNO at the University of Arizona did recommend that I stay with this current group because they are the best game in town.
Right now at T1, I am willing to be treated here in Tucson; this doesn't mean I won't high-tail it to Phoenix if needed. The reason I chose Dr. Ahmann (UA) was because his multi-disciplinary approach to genitourinary cancer seemed appropriate at this time with a more aggressive stage of my cancer. Furthermore, the team consists of a surgical urologist who works closely with Ahmann. This being said, I am taking your input very seriously.
Please realize that I greatly appreciate everything you've contributed to my situation through this blog; you have all become friends with incredible insight, which I do not take lightly. I'm definitely keeping my scheduled appointment with Dr. D, and may just cancel the appt. with Dr. Ahmann. That being said my husband and I are going to push for an earlier appt. with Dr. D.
Thanks for weighing in...you have given me hope and a clear perspective.