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 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.
I don't know the answer to this one, Rosie. I know that I feel very grateful to Dr. Lamm for responding to a question about BCG symptoms that was fundamental to my well-being and which my own Uro seemed to sluff off. I will always feel grateful for his response, because I felt like he cared.
I'm not sure, but that may just be the bottom line.
I can't get my Uro on the phone either, and he doesn't have E Mail, 'cause I checked. I have finally gotten the attention of his nurse who will return my calls before the end of the work day and not leave a message on the answer machine at my home to call her in the morning. :-/
But, by his one kind response to me, Dr. Lamm kinda restores my faith in Doctors and what they should be.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
In my 7 years involvement as a bladder cancer patient and being very involved in my own care and information available to me, I have had the tremendous help and involvement from Dr. Lamm, Dr. Schoenburg, Dr. O'Donnel, Dr. Soloway and Dr. Schellhammer all noted authorities on bladder cancer. They have all helped to put proper perspective into my specific case and treatment through phone calls and email. Imagine my chagrin when I emailed the urologist I have been seeing the past three years locally when concerned about the wording on a positive urine cytology test when his return email stated "I do not do medical practice by email." Please make an appointment to see me." I am still in shock that the urologist who has seen me in person, done 4 month cysto's, has performed a TURB is not as accommodating or approachable as urologists I have not even seen in person. Comments please.
Dr. Lamm has been a great friend to our group, this website and me since the first time we wrote to him in '98 for input. He always answers questions-quite rare for such a world renowned expert.
Mark Schoenberg is not only a brilliant oncologist but an incredibly kind person too, I don't know how he manages to spread himself so thin. You're right that the experts in bladder cancer know each other and that's because it's quite a small handful of experts that specialize in this field of urology. All the money is in prostate cancer. Experts in bladder cancer receive very little funding for their research and have trouble keeping their labs open, it's actually terrible. I'm happy to say it's improving, though. There are triple the number of clinical trials for bladder cancer now, than when my sister was dxed in '98. But still only a fraction of the number of trials that are being conducted on behalf of other cancers (prostate, breast, lung and colon being way up there). Considering that this is NOT a rare cancer, it's awful.
Dr. Schoenberg wrote the first book for blc patients in '99, and has been an advisor to WebCafe since then. When the first American foundation for blc got off the ground in '05(BCAN.org) he became their advisor as well. He's one of the most patient-friendly doctors I've ever met, along with Mike O'Donnel and Ashish Kamat, who are also on WebCafe's advisory board. All three of these men are tops in their field and it's an honor to know them.
Well i got a free consult from one of the best...Dr. Mark Shoenberg at Johns Hopkins. I emailed him and his secretary called me and set up a phone appt for me with him the next day. He was just wonderful. I gave him my CT results and TURP results and he actually gave me the names of 4 top physicians in the country to talk to. He didn't steer me wrong. I was fortunate that i have a PPO and could get as many opinions as i wanted and with last minute deals on the internet i flew from one coast to another and talked to all of them. He probably saved my life by putting me on the right track. All of these physicians know one another and share information. They're quite remarkable. I couldn't have gone wrong with any one of them. Pat