you should probably hire a new treatment team
I’ve done the calculations and it has cost (my insurance company) millions to keep me alive. Which made me think, why did I spend so much time overseeing and forcing my old treatment team to spend the time and care that was necessary? They are getting paid the big bucks and I’m barely hearing from them.
When my surgical plans went awry because my medical oncologist did not do a mid-treatment MRI, I researched a new oncologist. But frankly, I didn’t want to spend the time and thought I’d be done in a few months. I oversaw every single detail to ensure nothing was missed, I followed the recent research, and I knew I was receiving everything possible. But, I’ve since learned, that wasn’t necessarily the case and I’m in no means an actual oncologist (I think I could give a few a run for their money, though.).
Switching oncologists was terrifying but the best thing I could do for my care. Switching entire hospital systems also proved to be a much better experience for my care as well. The entire HCA health system has been under fire for cutting costs at the suffering of patient care and I experienced it first hand with a failed bone marrow biopsy and more. Also, the previous cancer center where my medical oncologist was and my infusions happened is just overrun with too many patients in my honest opinion. My oncologist was brilliant but just didn’t have time to properly review my case.
From my first appointment with my new oncologist, Dr. Irvin, I felt like he understood the dire situation I was in. He didn’t brush it under the rug, he knew that we needed solutions and we needed them quickly. After talking for 2+ hours he had scans scheduled for the next day, was interpreting and reporting scan reports to me within hours of the scans happening, and moved quickly to re-schedule a biopsy after the previous hospital system failed. He watches me like a hawk. He fights the system to get the scans done now, not weeks from now.
Also, the new infusion center is calming and the team is incredible. There’s no bickering of nurses or listening to their ‘drama’ or ‘hard Monday’ while getting chemo. Everyone truly supports each other. And we’re not all lined up like cattle waiting to be milked. Not to mention, the cold capping program is an absolute dream!
Now, I’m not sure every new hospital system and oncologist would be able to do this. But, I do know, this is how it’s supposed to be and how it should have been all along.
I’ve learned:
it’s not normal to have to interpret and read your reports solo without EVER hearing from your oncologist about them,
it’s not okay to have to wait DAYS for a message or call back from your oncologist,
it’s not acceptable that scans are pushed weeks, sometimes even months, especially when treatment decisions hinge on the results,
it’s not normal to need to source and consult other specialties, like a cardiologist, when treatments are inducing additional toxicities.
So, it might be time for you to review your treatment team. It’s so very worth it to fill the gaps and ensure you’re being well taken care of.
