Finding the right cancer care team

@54321kl This is a great question! @katgob gave a very good example of how she was able to get a great medical team together.

Remember, you are part of the medical team. A very crucial part, I might add. Here is the example I often use: The patient is the hub of a wheel, the medical specialists are the spokes. The spokes won't work without the hub, and vice versa. I have found it to be of utmost importance that we all work together. If there is conflict, it could be a problem. Do not be afraid to make a change if it is not working out like you think it should.

When I was going through my diagnosis of blood disorder, I was also moving 800 miles away to a new set of doctors! In fact, my first appointment with my oncologist was less than 2 weeks after moving! I found him by reaching out to someone who had a family member with the same disorder as me, and queried who their oncologist was, if they liked him. He is Mayo Clinic trained, and even before I physically made the move here, I had contacted his cancer center and requested to become his patient. At my first visit I asked him who he has had good rapport with for a nephrologist, and he gave me his recommendation. There have been no regrets. Likewise, I took my time seeking out [and interviewing ahead of time!] for a primary care provider. I took her recommendation for a dermatologist. Although they do not all share the same record management system, I find everyone keeps each other informed. And I keep detailed notes from all my visits, so if there are gaps they can be addressed.

Hoping this helps you, and please feel free to ask any questions.
Ginger

I am extremely disappointed in my care. I have an onc/ heme who refuses to work with a cll specialist. I can tell, from discussing treatment options, he is not up- to-date with treatments. He does not answer my questions. I need a cll specialist and a trustworthy onc/ heme. There are no cll specialists here.
To allow me to be seen by Mayo, I changed my insurance...Only to be told Mayo won't see me because I come from an area where hospitals are closing or being bought out....
I feel completely thrown away and at the mercy of people who see me as a mere income rather than a valuable life. I was an oncology nurse, so I do not make this statement lightly.

Your concerns are very valid. So much in medicine is left to profit. It's unfair to have anyone direct you to a care provider based on what is best for the hospitals in your area. I am convinced having a good caring care team does make a difference. I hope you will continue to advocate for yourself and continue to push for the care team you deserve as I am certain you have always done in the past for your patients.

I live in near the University of Michigan and was not referred to any specialist by my PCP as the wait was long for U of M. I have a physician friend who directs a family practice residency and he spoke to a former resident who provided the hematologist/oncologist name I have seen once. I am due to return but feel like there is a great amount of diversity in the care people receive and want to be sure I have care that includes an integration of opinions and treatments including diet, exercise, vitamins and if needed traditional care. I am new to this in the last 6 months and have no symptoms. I am willing to travel if needed.

Suggest you do an online search for the MPN Research Foundation. These docs are much more likely to be up on the current research and treatment options.
I was fortunate in that I was referred to an MPN specialist by my functional medicine primary. Don’t let anyone stop you from seeking the right professional 🙂