I have to say it was Dr. Lamm that got me started with the idea of a bladder cancer website when he corresponded with me in '98 on behalf of our group, and told me there were no patient advocates. Since that time I've written dozens of experts, not all of them reply. The ones who do renew my faith in doctors.
My own doctor, who is an expert on breast cancer here in Amsterdam, replied to the one email I ever sent him with "Make an appointement". Rosie, I know how disappointing that can be.
Rosemary, so true that the question I emailed my doctor was also fundamental to my well being and getting through the Holiday season with less concern. He did not, ( and evidently can not) oblige me in the type of medical care I need and desire in my urologist. Wendy, doesn't it make you wonder if the doctor really recognizes us as the exceptional patients and individuals we are when they have such a cold response to an email question? Exceptional, in this case meaning very involved the bladder/breast cancer community forums and advocacy groups and our own treatment. I think it unwise for doctors to have a blanket policy of no email or telephone consults. It seems doctors that have that policy are only treating a disease and not a patient. My doctors at UT Southwestern in Dallas were very accommodating by telephone and email. It certainly was more of total care with them than what I found since our move to Richmond, VA area. Even the dominent urology private practice group here does not offer a monitor for the patients to watch during a cystoscopy, they do no office fulgerizations/cauterizations or samples. The hopsital medical group does have a monitor to watch during cystoscopy but no camera to take pictures of what is seen and they take no samples, cauterization, fulgerizations in office. If something is seen a patient then has to go through pre-op tests, consultation and schedule surgery. I understand, Dr. Schellhammer's group in Norfolk has all the right equipment for patient to watch the monitor, take a picture of what is seen and even take a sample or burn it out while at the office cystoscopy. I am awaiting an appointment with that group.
I guess there are some great doctors out there and some not-so-great. My urologist seems to be pretty good (so far). He let me look at the tumor when he first saw it by holding the cystoscope up to my eye (It was quite a shocker).
He says I can call him anytime for questions. I took him up on that shortly after he did my TURB by calling him at 9:30 PM on Sat. night since I was so uncomfortable. He wasn't even the urologist on call! He was very nice and said I could call him anytime that weekend also. AND I belong to an HMO!
My only concern is, like a lot of doctors, he is cure oriented and not prevention oriented. His feeling is wait for the next tumor to appear and he'll zap that out also. When I ask him about ways to prevent it from appearing, he is kind of at a loss. When I mentioned foods high in anti-oxidants, he said: "That's good, keep eating those".
The Dr who diagnosed me moved away in August. We had a wonderful rapport. He actually called me as he was leaving town and told me that if I ever needed anything to give him a call at his new practice across State.
My new Urologist has been recommended to me by many people in the Medical profession, including my gynocologist of 10 years. Lots of votes of confidence.
So far, I have not enjoyed the same easy, two-way relationship as with my previous Doctor. The fact that I have had to PROVE to him that my arthritis is BCG related has not stoked my confidence in him. (This reaction IS rare, less than 1%). The fact that I have trouble getting a phone call to him doesn't help at all.
Also, when I took the E Mail from Dr. Lamm to my new Doctor, the doctor said,
"I think I worked with him. Was he ever in Virginia?"
I said, "I don't know. He is in Phoenix now. His name is Don Lamm".
He said, "Yes, I worked with him for a year in Virginia".
It kind of amazes me that my Doctor obviously is not keeping up with the Lamm research.
This kind of boggles my mind. :o
But, I have made a CONSCIOUS decision that I am NOT going to alienate this Doctor with any complaints. He has been too highly recommended, and I may really need him someday.
It helps to talk about this...
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Rosemary, I have found people who highly recommend a doctor often times have not been treated by that doctor themselves or have not been treated for the same condition. My first urologist in Texas was highly recommended to me by a surgical nurse that worked at his hospital in Wichita Falls. After 2 visits to him I learned that he was inept and switched to a urology center at UT Southwestern Medical Center in Dallas. I sent a letter to Clinics of north Texas complaining about the urologist and his lack of proper procedure, protocol etc. I received a letter in return dropping me from any further service from any physician at Clinics of North Texas. That group included my primary care physician and my gynocologist. A few years later the same urologist was in the news for suddenly deciding to cut off a man's penis while doing bladder cancer surgery. Of course the man had not been advised that was a possibility during the surgery. As if that wasn't bad enough the pathology report showed the penis was not cancerous. You may have seen the man on the Oprah Winfrey show about a year or so ago. Moral of this story GO BY YOU OWN INSTINCTS.
Actually, I take your point quite well. You may be on to something, too
But, in my case, there are options and there are options.
The Urology Clinic here is the only show in town. My present Uro has been represented as the most warm and cuddly of the group. There is another Dr. at this clinic who discounted blood in my urine about 8 years ago. I do not want to see him.
I could go about 45 miles away to a University group which might be better. But, that would be a great taxation to my sick time at work and a burden on my family for future hospitalizations. :-/
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006