Changing My Medical Team
In May of this year, I was faced with a difficult situation. Stay at the small cancer center I had moved to for maintenance treatment or transfer back to the large academic hospital where I started.
Care team changes
We noticed that the function of my left kidney had continued to decline and I would need to begin consulting a nephrologist moving forward to monitor the kidney. My smaller cancer center did not have a nephrologist or specialists on hand familiar with an ileal conduit.
Then I had some "soft tissue" show up on my CT scan which required a second look by my main team at the academic facility. Essentially I was being told that whether I stayed at my current cancer center or moved, I would have teams at both facilities monitoring me and would need to travel between the two often. So as the band The Clash sang, "should I stay or should I go?"
I did ultimately decide to move all of my care to the large academic facility and I have not regretted my decision. I knew with all my specific needs and rare diagnosis, I needed to be monitored by top-tier staff, but more importantly, be in a facility that could perform surgery or specialized treatment on the spot. Getting acclimated to a larger facility and navigating my numerous specialists took some creativity, but having everyone at one location was the best choice.
Changing my bladder cancer medical team
It is not unusual for cancer patients to transition from one location or team to another. Oncologists move or retire, second opinions are needed, and specific treatment protocols may only be offered at certain locations. Staying with one team through your entire diagnosis and treatment process is very rare. But if you are making a team or facility move I have a few tips to make it a little smoother.
Ask a million questions
When getting started somewhere new there is no such thing as a dumb question. Ask if the infusion floor has snacks. Ask about after-hours contact information. Ask how often you will be face to face with your oncologist. Ask if they agree with the current treatment protocol you are on. Ask everything and anything you can think of. This gives you a chance to feel the vibes of the facility and the personalities of the staff.
Being somewhere you feel comfortable asking questions and where your questions are validated is so important.
Although care teams should communicate and send over all notes, images, documents, and reports, things are bound to get lost in the shuffle. Requesting copies of your medical records before leaving allows you to hand off anything that may be missed. Having your records on hand is helpful for your own knowledge as well.
Take time to adjust
Care teams and facilities are all very different. For me moving from a small 2-floor cancer center to a huge academic hospital was intimidating.
Navigating parking, finding correct floors, and getting used to the general flow of appointments took almost 2 months before I felt completely comfortable. Any transition will have bumps and setbacks, but as long as you see your care moving forward positively, it is best to take any hiccups in stride. But never be afraid to voice concerns, and again ask questions if you are ever not sure of how things are going. The most important advocate in your care is you, so make that voice heard.
As they say, change is inevitable. But you've got this!
Have your views towards bladder removal changed since you were diagnosed?