Two TURBTS since Jan and still no BCG treatment..

Annabelle,

I am sorry that your appointment went so poorly. I think you are making a good decision to find a new Urologist/Oncologist. It doesn't sound like you two have very good communication going on between you, and that is a crucial part of the treatment plan.

As far as the monitoring of the bladder for more tumors and removing them via TURBS as they return, that is the option that I am currently going through. That being said my Uro also is very careful and watches the situation closely for any change in how the cancer is progressing. We also have very good communication between us, and he makes sure that I understand exactly what he is saying, what is going on, and what are my options. This is how it is supposed to be between you and your doctor.

I really feel that you should seek out another doctor, at a different facility and see if they have any other opinions as how to progress from here. Be sure and have all of your medical records with you (Keep a journal), and be completely honest with them.

This is not to discredit your current doctor. This is mainly because of the relationship between you and your doctor. Hopefully He has the right plan of attack, but is presenting it to you poorly. The only way you will know is to seek out another opinion else where.

Hang in there, and never lose your humble insight as to how thing could be worse, but also remember that things can and do get better.

We are here for you.

Mark

Hope you all are well since last post..I wanted to update you about yesterday's appt. My uro again has put off BGG treatments after learning that I had not had my colonscopy yet, which is scheduled for next week. He recommended that we schedule my scope in 6 weeks and was ready to end the visit.
My gastro Dr, who happens to be his father, and who is the only other physician in the office, had not yet mentioned the recommended PET, or shared any ongoing information since performing my endoscopy two weeks ago. I assume he is waiting until after the upcoming colonoscopy, which is somewhat understandable. But again, the uro was adamant that he saw no reason for the PET to be ordered. He seemed to downplay the BC as if I can get by without any treatments other than repeated scopes and TURBT if re-occurance occurs, comparing it to "cutting grass". When I ask if BCG shortage was an issue, he was quite surprised wanted to know how I knew about this. But, before I could even answer, said he "has it". I was unable to finish a sentence without his interuption and unable to inform him of other procedures/test with my endocrine specialist, which includes a recent diagnosis of Human Growth Hormone deficiency. My endo is reluctant to supplement this since I have a cancer diagnosis, and referred me to a neurologist since it is associated with a pituitary disorder.

This was the most frustrating appointment..My list of 8 questions were not completely addressed, even when I eventually handed the list to him.
My previous squelched feelings of doubt have been validated. Knowing how the tumors reoccured only 12 wks beftween the last 2 TURBTs continues to concern me. The cystoscopy is scheduled for Aug 27. I will have the colonoscopy on July 18 and hopefully more understanding. I am looking for a new urologist who specializes in oncology. And of course praying for continued guidance in this situation. I know it could be worse and am thankful it is not..

Catherine, Thank you again for your encouragement..I will update after my appt Thursday. Til then I hope you're having a great week! Hugs and blessings, Anne

Thank you Mark..I will see my uro this Thursday and will know more. In the meantime I am seriously considering a second opinion after this appt. You story, too is amazing and I am glad you shared it. What a blessing to have full confidence in your Dr! I aspire! Be well and God bless!

Annabelle,

Doing your home work when picking a care provider is very important. But this should not over shadow the fact of having faith and trust in your doctors. This will give you a little piece of mind when it gets scary.

My Urologist has been doing this for over 30 years. He treated my father, and my step father both for cancer. Now he is treating me. I was told by my Primary Doctor that when he submitted the request to the urology department, my Uro. Dr. Hutchins picked me out because he recognized the last name.

This is remarkable because my father passed away 24 years ago. But this shows how much some doctors really care about their patients. He told me that my father and step father where at a very high grade and stage when they finally went to see him. But seeing as I came in right away when I first suspected something was up, he was sure that he could save me.

Knowing I have someone that cares that much has given me, and my family a great measure of relief while dealing with my cancer. I don't have to guess if he is looking out for my best interests, I know he is.

May God guide your decision. And keep you safe.

Mark

I am glad you wrote of your success with MD Anderson, and your 4+ years of being free of cancer. So encouraging. I recently learned that MD Anderson is affiliated with East Jefferson Hospital in New Orleans, as a service to cancer patients in my area. It is hard to know if the care would be equal, but I would hope that it is. I will be looking into this as well and appreciate your support..Stay well!