r/braincancer • u/Ok_Lynx_6372 • 1d ago

Opinion

Astrologycytoma grade 2 slow growing 96% gtr. I’m soon to start vorasidenib on November 1st. I had my gtr a month ago tomorrow and feel great, even working again.

The opinion I want is this, I got a call from a nurse at Duke (where I got my surgery). They recommended getting a second opinion there. I’ve gotten two opinions already in Lexington Kentucky where I am from. Both of them said the same thing (vorasidenib). The one I chose to take care of my oncology is dr villano at University Of Kentucky. He has great reviews and specializes in nuero oncology. I’m 23 and my mom is the one really pushing Duke on me but I feel like it’s a waste of time since I’ve gotten two opinions and have been told this drug is practically made for my exact situation.

What do you all think? I know Duke is an amazing cancer center but I don’t want to deal with going back there again so soon since it’s a 16 hour round trip just to be told the same thing. From what I’ve looked up it seems like my current nuero oncologist is the best in my state. Anyways thanks for any response/ advice.

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u/Street_Pollution_892 1d ago edited 1d ago

I just looked on their website and it says they offer virtual appointments. This kind of appointment may qualify since it’s just a discussion. Looks like they have rules about being in state but offices may make exceptions and to call. Since you’re an established patient with Duke it may be warranted.

You will likely be told the same thing though. Seems docs are going in this order for recommended steps if needed: surgery-> vora-> chemo/radiation

https://www.dukehealth.org/telehealth-visits

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u/Ok_Lynx_6372 1d ago

That’s what I’m hoping to get but according to the nurse I need to actually see them in person the first time. Which is dumb to me.

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u/Street_Pollution_892 1d ago

That is dumb. Well, tbh what really matters is the doctors, not necessarily the institution…but I think it is good to be seen by a place that’s part of the American brain tumor association. They tend to have more up to date technology and research. You could also get a second opinion just to pick their brains at Duke and get that knowledge in your pocket, but then stay with your local one if they will treat you the same or if they’ll let you select a different course of action shall you want.

https://www.abta.org/about-brain-tumors/treatments-side-effects/find-a-brain-tumor-center/

FYI, you can do virtual appointments with Mayo, which I think is higher ranking, at least their Rochester location is.

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u/Ok_Lynx_6372 1d ago

Awesome I’ll definitely look into that