Finding the right cancer care team

This is a great place to start and i expect the mentors and others will respond. I will say from the gate I got all my team from referrals. I fortunately live near Cit of Hope in Duarte, so my 1st biopsy through my primary care had a conversation happen that was to refer me to a different place for tumor removal. The local surgeon's office? City of Hope? I found a surgeon in my insurance plan at the COH and made an appointment to meet with her. From there, I was referred to the medical oncologist. A genetic test was offered, so I took it, (I had been donating platelets at the red cross for 25 years, so my blood had been studied all those years). My Med oncologist provided a plan for my breast cancer. Two days before 1st of 4 chemo infusions, I got my genetic results and I had Brca2! What???? My chemo treatment went then to 12 weeks, once a week, then to be 4 more every three weeks. ....... all this was finished in Dec of 2022. By then, I had been referred to a plastic surgeon, a Dr. for the Blood clot i had developed and a Dermatologist for the spots on my face noted by my Nurse Practitioner who worked with the Med oncologist.
WHAT A TEAM!!!
A cancer treatment hospital was key for me. Having insurance that has covered all my treatments has been live saving. My first great doctor referred me to her other team members at the facility. I have read others sharing feeling a bit lost. Seems many hospitals and doctors' offices, so not have all these solid links in place.
I am currently now being treated with the Hematology department, with a new Doctor selected by the hospital with a focus on what my tests say i now need.
You have asked the right question. It did make a difference in my 2.5-year journey. The first question to ask yourself, is does this specialist listen? Do they ask you questions, offer what test results show and your options. I was listened to that first visit and i trusted what I was told.

@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

The right medical care team is crucial. And a prior commentor is correct - we, the patients, are key parts of that team. My PCP is based at a small, regional hospital - St. Josephs Medical Center - that is part of a large, state-wide university with a teaching hospital - University of Maryland Medical System. At St. Joe's they foster a culture of caring and working together, and there are regularly scheduled meetings/calls so that practitioners in various specialties get to meet and know each other. My PCP met the hematologist-oncologist she referred me to during one of these meetings. The heme-onc doesn't hesitate to help me address concerns that are peripheral to my blood disorder including concerns about getting an endoscopic ultrasound scheduled by my GI team at a different hospital outside the UMMS network, and difficulties finding a nutritionist who would help me. All of my providers are caring, compassionate, knowledgeable, and don't discount my concerns or any information I've found on the internet that might be related to my health issues. And they communicate across medical system lines when necessary (at least my heme-onc does - he won't hesitate to reach out to ANYONE if he thinks it will help me). All in all, I feel amazing blessed to be part of this care team!

@54321kl, were you referred by your PCP to Mayo Clinic or to a different center of excellence? Will you be traveling far for care?

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.

I thankfully landed at Mayo in AZ after going undiagnosed by many specialists in different fields. Every specialist would say, you sure have something, but it’s not in my area of expertise. Once I hit the fantastic team at Mayo, I was diagnosed in 48 hours. I spent 3.5 weeks in the hospital there. They would not release me until they found a hemo oncologist and system that would continue the medical protocol they set up. The doctor and hospital was outside my insurance plan, but Mayo presented their case and my insurance let me go outside their network in my home state.

Mepowers,
That is great news . I found the department at City of Hope and the Doctors to be masterful at getting my treatments what is called "Medically necessary". I was denied a procedure after my mastectomy to expander surgery, so my plastics Dr called the insurance doctor. It was approved. Now I need to contact them about the cost of my future bone marrow transplant.

Katgob, the insurance companies are brutal. I know so much about fighting them now vs when I got sick. Sounds like the City of Hope stepped in for you just like Mayo did for me. It’s a shame that people have to deal with being sick and fighting, begging and pleading with the insurance companies too.

Hello,
I have Polycythemia Vera and see a local Oncologist and an MPN Specialist at the University of Michigan. I don’t know what your specific diagnosis is but I encourage you to see a specialist that is trained and treats specifically within your diagnosed condition. My local hematologist/Oncologist is good but not specifically trained and studied in MPN’s. I feel confident that by working both with my MPN Specialist and local doctor is the best method of treatment for me as I live about an hour from UofM. They work in conjunction to be sure I’m getting all bases covered.

I agree empowers as I met one lady in the department at COH who I contacted to see if they are paying the $6.000.00 bill I received from Anthem. She told me to not pay and do not worry. She has been in this department for 30 years and knows how to work with insurance companies. She told me to take care of me.
Wow I thought. How many smaller hospitals, not like Mayo, COH and other cancer hospitals do not have that help.
I try to advocate to others, that they keep calling and asking till they find the person to get them help.