Thank you for sharing this. Your story was told in such a thoughtful and honest way.
In the U.S., things vary quite a bit. Around 80% of cancer patients are treated in community settings, and many of those centers don’t have fully functioning tumor boards. Larger hospitals like mine usually do, and academic centers almost always do, but that’s not the case everywhere.
A lot of people have to drive an hour or two just to get to a center with access to a full team. That’s a real barrier. And even when a tumor board is available, how decisions are made, and how well they’re communicated, really depends on the team and the oncologist. Some are great about involving patients. Others, honestly, are not.
At our center, we have nurse navigators who help keep communication going, but I also try to personally call every patient after their case is presented. I want them to hear the plan directly from me and have a chance to ask questions before we move forward.
When I present a case, I give a brief history and include a bit about the patient’s goals and preferences. Whether they want to take a more aggressive approach or focus on quality of life, it helps guide the team’s thinking.
In ten years of practice, I haven’t received many letters like the one you wrote. But if I did, I would find it very helpful. Those communications whether it’s email or MyChart help us understand the personand make sure the plan reflects what they actually want.
I also think it’s really important for patients and families to know that advocating for themselves matters. The people who do tend to feel more in control of the process. In my experience, they often end up with better communication and more confidence in the choices they make.
Thanks again for sharing this. It’s a good reminder for all of us.
It’s very rare in cancer that insurance will not cover a particular treatment plan, especially if it’s part of our guidelines. That being said they will make the process as painful as possible for everyone involved and it can take hours of our time to work through it. Not a week goes by I’m not on the phone doing a Peer-to-Peer explaining why we are using a particular treatment. I’ve had only a few denied over the years and then we rely on industry or grants to provide that coverage gap.
Thanks for this thoughtful reply and this background information- it’s interesting to learn about the different systems.
Can I ask you, in an insurance-based system, if a patient wishes to opt for a low odds treatment approach which might not fit a consensus, are there situations where the insurance company refuses to fund? Forgive my ignorance!
Thank you for taking the time and effort to answer my questions, Rachel. I appreciate how you've laid this out—very clear on facts, and empathetically presenting the viewpoints of those involved.
This is difficult to navigate in life and very difficult to articulate in writing, but you've done it very well! Thank you.
We are closely partnered with the nurse specialists and oncologists and have built alignment on what would happen when, which I'm confident we can revisit if necessary. At first, when there was a scan or test, I hated the feeling of being 'in limbo' waiting for someone to tell us what the scan says AND the MDT recommendation, aka what is set to happen. Now, I feel confident that our doctors align closely with our wishes, so I'm less anxious. Still, your experience equips me with a 'just in case' action plan. Thanks!
When I consider how we got here, it's taken time and several interactions with doctors who take their time with us. I know of experiences that are opposite to this.
Thanks Victoria. I’m so glad you are comfortable with your mum’s team. Den and I also have this now, and have experienced lots of really good patient-centred care. It’s tricky talking about more difficult times, but we must, I think, if we want to empower people.
Thank you for sharing this. Your story was told in such a thoughtful and honest way.
In the U.S., things vary quite a bit. Around 80% of cancer patients are treated in community settings, and many of those centers don’t have fully functioning tumor boards. Larger hospitals like mine usually do, and academic centers almost always do, but that’s not the case everywhere.
A lot of people have to drive an hour or two just to get to a center with access to a full team. That’s a real barrier. And even when a tumor board is available, how decisions are made, and how well they’re communicated, really depends on the team and the oncologist. Some are great about involving patients. Others, honestly, are not.
At our center, we have nurse navigators who help keep communication going, but I also try to personally call every patient after their case is presented. I want them to hear the plan directly from me and have a chance to ask questions before we move forward.
When I present a case, I give a brief history and include a bit about the patient’s goals and preferences. Whether they want to take a more aggressive approach or focus on quality of life, it helps guide the team’s thinking.
In ten years of practice, I haven’t received many letters like the one you wrote. But if I did, I would find it very helpful. Those communications whether it’s email or MyChart help us understand the personand make sure the plan reflects what they actually want.
I also think it’s really important for patients and families to know that advocating for themselves matters. The people who do tend to feel more in control of the process. In my experience, they often end up with better communication and more confidence in the choices they make.
Thanks again for sharing this. It’s a good reminder for all of us.
It’s very rare in cancer that insurance will not cover a particular treatment plan, especially if it’s part of our guidelines. That being said they will make the process as painful as possible for everyone involved and it can take hours of our time to work through it. Not a week goes by I’m not on the phone doing a Peer-to-Peer explaining why we are using a particular treatment. I’ve had only a few denied over the years and then we rely on industry or grants to provide that coverage gap.
That’s very interesting. Doesn’t matter which healthcare system we work in, beaurocracy and papaerwork is always there to beat us down!
Thanks for this thoughtful reply and this background information- it’s interesting to learn about the different systems.
Can I ask you, in an insurance-based system, if a patient wishes to opt for a low odds treatment approach which might not fit a consensus, are there situations where the insurance company refuses to fund? Forgive my ignorance!
Thank you for taking the time and effort to answer my questions, Rachel. I appreciate how you've laid this out—very clear on facts, and empathetically presenting the viewpoints of those involved.
This is difficult to navigate in life and very difficult to articulate in writing, but you've done it very well! Thank you.
We are closely partnered with the nurse specialists and oncologists and have built alignment on what would happen when, which I'm confident we can revisit if necessary. At first, when there was a scan or test, I hated the feeling of being 'in limbo' waiting for someone to tell us what the scan says AND the MDT recommendation, aka what is set to happen. Now, I feel confident that our doctors align closely with our wishes, so I'm less anxious. Still, your experience equips me with a 'just in case' action plan. Thanks!
When I consider how we got here, it's taken time and several interactions with doctors who take their time with us. I know of experiences that are opposite to this.
Thanks Victoria. I’m so glad you are comfortable with your mum’s team. Den and I also have this now, and have experienced lots of really good patient-centred care. It’s tricky talking about more difficult times, but we must, I think, if we want to empower people.
I hope your mum is doing ok.