As many of you know, we recently moved from Miami, Florida to Orlando, Florida and that necessitated some significant changes in my oncology team. It was quite sad to leave many of the doctors and staff who I’ve been seeing for my healthcare for the last nearly five (5) years. Those of us with serious/complicated illnesses end up seeing our medical team a great deal more than healthy people, so changes can be really difficult, especially with those doctors who have treated us for years.
Over the years in Miami, I’ve seen a variety of doctors for oncology and other issues. Most of these doctors were those I saw for a short period of time for a particular issue, such as the infectious disease doctor I saw once. The first thing I had to do was figure out which doctors I absolutely needed to see once we moved and which doctors could wait unless or until there was a specific issue.
The first specialty that needs to be covered for me, as a forever patient, is my medical oncologist. A medical oncologist serves as the quarterback or the hub of treatment for a cancer patient. For me, I will have two, one at The Mayo Clinic in Jacksonville who specializes in research and conducts a lot of trials and one locally at Orlando Health to be able to order treatment locally. This will require my doctors to work together, a partnership which is supported by the fact that my patient portals are linked and my doctors can see the other’s information as well as appointments/treatment. One thing that will be a challenge is how often I have to carry literal CDs of the images done at each location or for second opinions. It would be really helpful if the radiology and oncology groups could figure out how to share images better!
The second, for me, is my primary care physician (PCP). I’ve noticed as I’ve gotten older that seeing a PCP becomes more important as “normal human issues” come up along with the cancer treatment issues and the oncology team isn’t often well suited to address them. For me, I am returning to the PCP who helped to diagnose the breast lump that started my experience with breast cancer. She has also received updates and notes over the years as to how my treatment is going so was pretty up to date when I saw her again.
The third is a palliative doctor. Palliative care is supportive care focusing on quality of life for anyone who has been diagnosed with a serious illness. Some confuse this important specialty with hospice, which is end of life care. Most palliative physicians are also trained in the principles and goals of hospice care so as to assist their patients in transitioning at the appropriate time.
When I head up to Mayo for my PET/CT scan in July, I’ll be meeting with psychiatric and integrative oncologists to further supplement my ongoing care. I’ve found a massage therapist and am in the process of finding an acupuncturist and a doctor to prescribe medical cannabis. Assembling a team of both traditional and complementary care is a lot of work, but necessary.
One of the most challenging issues is getting used to the new methods of communication since I’ve gotten pretty comfortable with how I access my medical care. I’ve had to ask a lot of questions about protocols and procedures for scheduling appointments, which teams handle which issues, and how I express concerns between appointments. It appears that I’ll be using that linked patient portal a lot more than I have been in the past. Adjustments all around.