How to get second opinion
I was diagnosed with High Grade non-invasive bladder cancer in December 2020. It was only on the inner wall, and has not impacted the muscle. I had sent my report to a Oncology friend of mine, and after looking at the report, he said looks like its not that serious. Go with your Urologist suggestion and go thru BCG treatment. I went thru a set of 6 BCG treatment - after that my Urologist said, the cancer went from "high grade" to "low grade" but he found small cancerous cells and removed it - so went thru another course of 6 BCG.
After that second set of BCG treatments, went through another Cystoscopy. Now Urologist says nothing new came up, all the places he removed before are clean, and he took sample from bladder and Biopsy shows that area is cancer free. BUT - it looks like when last time I went thru Cystoscopy, when he removed cancerous cells, some of them might have attached to the upper wall of bladder, and he saw some small amount and removed it. It is still "Low Grade"
My Urologist says, while BCG is effect against "high grade" cancerous cell, it may not be that effective against "low grade". So he is proposing "mitomycin" treatment - administered similar to BCG - sprayed on the inner wall of the bladder.
I want to get second option now. I had consulted another Urologist in the past, who (after looking at the report) had concurred with my primary Urologist approach. While I still have confidence in my urologist, I want to make sure some one does an independent test and come to the same conclusion.
Should I go to some major clinic such as Mayo Clinic or some Cancer center such as MD Anderson to get this second opinion? Do I need to consult an oncologist? I would prefer more than just reading the same report and giving opinion on that. How should I approach this.
Thanks for your help and guidance
Hi
! Thanks for reaching out. You have great timing, as we just published this new article - https://bladdercancer.net/clinical/finding-new-urologist
How you decide to go about getting your second opinion is completely up to you, but it helps to understand what your priorities are. Is it the gender of your doctor? Their experience with bladder cancer? I would recommend focusing on the individual provider rather than the larger institution. Most doctors operate out of multiple hospitals/institutions. You may even want to look into a urology oncologist given your recurrence. Unfortunately, recurrence of bladder cancer is incredibly common.
Some more food for thought that may help:
https://bladdercancer.net/living/getting-second-opinion
https://bladdercancer.net/living/anxiety-recurrence
Please let us know how you make out!
Amanda (Bladdercancer.net Team Member)
Hey
, I hate to hear you're going through this. I think you're totally in your right to get a second opinion. While I am not a medical provider and can't tell you HOW to find a 2nd opinion i'd recommend if possible find an oncologist that is very familiar with bladder cancer. If you have access to a major clinic such as Mayo you should absolutely seek out the best care you're able to obtain.
Our advocate Renata gives a lot of great advice on how to approach finding a good person to get a second opinion from in this article: https://bladdercancer.net/caregiver/get-second-opinion-doctor-sees-lot
I'd also recommend checking out these articles from other advocates who provide good insight on ways to go about finding a good second opinion from:
https://bladdercancer.net/caregiver/get-second-opinion
https://bladdercancer.net/living/why-get-second-opinion
How are you as a whole?
- Jada (BladderCancer.net team member)
Hello mettur - I just went through the 2nd opinion process. I chose 2 paths. I contacted a hospitalist at a large cancer center near me and asked her to make some colleague referrals. They were all urology oncology specialists and all had very solid backgrounds. This center has the specialists post videos on the hospital website and after watching I reached out directly to the Drs I thought seemed to cover what I was looking for. Based on the advanced treatment options offered at this center, I ultimately transferred to this care team.
The other path I used was the formal Cleveland Clinic second opinion process (Google it - I think other hospitals are doing this as well). After filling the web form and agreeing to the $1850 copay (ouch, I know), I was immediately video conferencing with a coordinator who was able to quickly (in minutes) get all my records and labs, ordered the pathology slides for second reads, and in a week had me meeting with a CC specialist in urology oncology to discuss my case. They fully concurred with the second opinion I received from the new Dr.
Although I have selected the Dr from the local cancer center, I’m continuing to leverage both the local cancer center AND CC as I take each step through my treatment. This way I can quickly compare if the gold standard treatment is being offered, and also have visibility to different approaches and possible new approaches and clinical trials (something I am personally interested in).
The Dr. I am now working with is a team player and really applauds this approach, including staying in touch with the CC. He has colleagues at the CC, in Chicago and Mayo Clinic and readily admits no Dr and no one hospital has all the answers, so welcomes a proactive patient. This has not always been my experience so it is a refreshing place to be right now.
Thank you all for your responses. Especiallyfor providing his personal experience.
To be honest I am pretty happy with my Urologist. He is conservative (not aggressive with treatment) which suits me. A few months ago, when I went to emergency to get my bladder irrigated due to blood clot, we consulted one of my friend who is an Urologist but 3000 miles away, he suggested some medication based treatment. But my Urologist took a different approach, asked me to stop some medication I am taking and wait and see - sure enough he was right, blood clots stopped and I was OK.
While I like him and prefer to stay with him, even after 2 BCG treatments, there is still some cancer cells left (although small amount). Yes the cancer has gone from "high grade" to "low grade" and only a very small fragment left. But its still there 🙁. So I feel I need to consult an Oncologist (besides the two urologist I am talking to already).
I did consider going to Mayo or CC - neither one is close to where I live in Texas and since I want to consult an Oncologist, I decided to go to premier Cancer Center MD Anderson - its 2 hours away from where I live. I am going to talk to a doctor, who specializes in Bladder Cancer (they have others who specializes in Prostate cancer, and a few who look at any urinary tract cancer including Kidney). They do have one doctor who is Internationally well know and has published numerous publications on Bladder cancer and heavy into bladder cancer research. I am not sure if I can get an appointment with him or if he will be able to spend enough time with me. I assume the doctor who is going to see me, would be able to tap all his resources, since he is in the same department. He is also been doing this for well over 12 years.
I am "hoping" he will be in agreement with my Urologist, and I can continue with my treatment with my Urologist in my town (keeping fingers crossed). They are getting the pathology slides from Urologist, and I have an appointment in about 2 weeks. Lets see what comes out of it.
Again thanks for all your help.
