December 20, 2017
Has anyone had experience with getting a second opinion after an initial diagnosis?
Shirley Norris Moderator
December 22, 2017
I didn't get a 2nd opinion after initial diagnosis but I did request one prior to being diagnosed. Initially I felt like I was betraying the Consultant whom I'd been seeing for 18+ months. However, I was becoming more poorly, with repeat UTI's that were becoming more persistent and difficult to treat in that I was becoming resistant to most antibiotics and I was actually spending more of my life suffering with infection than I was without. It was at this point that I requested a 2nd opinion. Within 4 weeks I was diagnosed with high grade, aggressive bladder cancer. The moral of my story is, it's your health, your body and you need to look after and protect it. If you feel that you are not getting the best treatment or you just want a 2nd opinion to look at and discuss your health issues or proposed treatment plan, go for it! Sometimes it's necessary for reassurance and to be honest, I believe that most Doctors are quite happy for patients to seek a 2nd opinion. So don't be afraid ever, to seek a 2nd opinion it's your well being and you are responsible for it.
Paul Hebert Moderator
December 22, 2017
I got three opinions because if the first two differed then I was still 50/50.
My first opinion came from the doctor I saw after going to the emergency room with a ton of blood in my urine - so much I thought I had internal bleeding. That doctor/hospital did the initial turbt and diagnosis. Their recommendation was radical cystectomy and external urine bag. I was pretty sure that was what I was going to do. Why not? You trust doctors.
A doctor friend of mine suggested someone more local and we wen there. They reviewed the diagnosis and agree it was T2 High grade and needed chemo and cystectomy. BUT... they were adamant that I get the neobladder. To the point that they were almost calling me an idiot for thinking otherwise.
That made me get a third opinion with the idea being that whatever they said - the 2 similar answers would win.
I went to NC Chapel Hill hospital at the university and they said neobladder.
I have a neobladder now and am happy I did. Works great. No bag.
Short answer... definitely get a second opinion and get three in case you need to break a tie.
I would rather be alive than worry about hurting some doctor's feelings. When you get a cancer diagnosis - that's 100% permission to be selfish and do what YOU think is right.
Renata Louwers Moderator
February 14, 2018
Yes, definitely. It will either confirm what the first doctor told you or cause you to realize there are other possible approaches. It is often a hassle to get a second opinion but it is worth it. You especially want to be sure you are seeking opinions from doctors who see and treat bladder cancer every day. If surgery is recommended, you want to know how many times your doctor has performed the surgery. For instance, bladder cancer is more common in men than women. So if you are female and having a radical cystectomy, you want to know how many times your surgeon has done this surgery on women. There are certain doctors who have more experience treating women. Good and confident doctors understand that educating yourself with multiple opinions is a wise strategy for a patient.
Sarah Wallin Admin
February 15, 2018
Renata, a second opinion can certainly give you some more perspective about possible approaches to treatment. The considerations you mention such as how much experience the doctor has with bladder cancer, how many times the doctor performed a specific surgery, and how much experience he/she has with treating women can be very wise to look into.
Thank you for weighing in on this important discussion topic.
-Sarah (BladderCancer.net Team Member)