Choosing your healthcare team is one of the most consequential choices you’ll make in the management of your pheo para diagnosis. Pheo Para Alliance Executive Director Stephanie Alband and Canadian Neuroendocrine Tumor Society Secretary Sara Spearey offer information on who your care team should include and what you’re looking for when evaluating providers.
The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in depth knowledge of your medical history and current situation.
Questions and timing are as follows:
#1 at 53:48 – “I have neuroendocrine tumors and am being followed by an oncologist in Ottawa, Canada. I have been wanting a second opinion because I have been given confusing answers. Should I ask my oncologist for a second opinion to go to Sunneybrook, or could she get mad at me and drop me as a patient?”
#2 at 56:33 – “Is there a list on the PPA’s list of Centers of Excellence that shows pediatric centers?”
#3 at 58:01 – “How do I know I have pheo/para? I am metastatic.”
#4 at 59:55 – “Is pheo/para a neuroendocrine tumor (NET)?”
#5 at 1:00:18 – “So far I have met with two surgeons. Each one had quite different approaches: whether to embolize or not; where and how big the scar would be; or whether to do surgery on the para and other mass at the same time. So how do you know which of these approaches is the best?”
#6 at 1:03:13 – “If my medical team is stuck, what is a good way to approach getting a second opinion? What kinds of documentation would the 2nd doctor want to see?”
#7 at 1:05:28 – “I’m post pheo surgery and I didn’t know about the Centers of Excellence previously. My endocrinologist just retired and I’m having a hard time getting scheduled at a Center of Excellence for a follow-up to see if these new lumps in my neck might be non-secreting para. I don’t know how to best present myself to get seen as a follow-up patient and would love advice.”
#8 at 1:07:47 – “Do you need another type of specialist on your team when you start PRRT?”
#9 at 1:08:54 – “Is there a Center of Excellence in Canada?”
#10 at 1:10:32 – “Is there a Center of Excellence in Scotland?”
01:10:50 – *Sara’s experience on the WELIREG® (belzutifan) trial.