There might not be an "I" in "team" but there's a hell of a lot of "me"
To fight cancer, you have to have a Multi-Disciplinary Team or MDT. Because NETs cancer is rare and very unique to the individual, the team's makeup can be unique to the patient. I wanted to share what my team looks like. They are mostly at the Knight Cancer Center at OHSU (Oregon Health and Science University). The love and support of my family and friends is a key part of all of this, but I wanted to identify some of the dedicated roles on my team. I haven't shared actual names, but if that's something you are interested in please feel free to shoot me a note. This is what my team looks like.
Medical Oncologist - Ok, his name (Dr. Guillaume Pegna) I am giving away because a podcast just came out featuring him that I want to share. He is my quarterback, the Dr. who is leading my care. He brings in other specialists when needed across a variety of disciplines. His role is to help get me better with everything possible but he is not a surgeon and passes me off to a surgeon when surgery is needed. He prescribes my chemo regimen, and my scans, and monitors my progress. We meet once a month and I do blood testing before we meet so we can review.
Nurse Team - You won't find a bigger fan of nurses than me. They carry such a heavy load but play such a key role in recovery. The Nurse team is the primary line of communication for me and gets me the answers I need as soon as they can. In my hospital experience, the nurses are also the ones who made me feel like a human being and not just a patient. In my next life, I want to be a nurse!
Physicians Assistant - I am very lucky in that my Oncology team has a great PA who has been a huge help to me in many ways already, whether its monitoring and saving me from a bad infusion reaction or doing a regular appointment with me to review blood work results.
Naturopaths (ND) - For those who know me well, you know that I am very holistic and believe that there are a lot of treatment modalities that can work to help me heal. I have two NDs who focus on helping my overall body heal and thinking through why my body even produces cancerous tumors. I meet with them monthly to discuss supplements, natural treatments, alternative treatments, symptom management, progress, etc. I am exploring and using a number of natural or complementary treatments (that's an industry phrase) including increased Vitamin C, Curcumin, Ozone, Acupuncture (not yet but potentially at some point), and others.
Therapist - I am going through a lot. My Therapist helps me process and understand what I am going through and how to work through it. I can't stress how important taking care of your mental health is in general, and especially when up against the shit (I had to say something unexpected somewhere!)
Surgical Oncologist - You can probably guess what they do! My surgeon's name (for the NETs cancer) is Dr. Rod Pommier at OHSU. He is one of those godfathers of NETs surgery and is nationally and internationally known. We've met with him once and he's walked us through what my surgery could look like. It doesn't look like fun but it's pretty far off so I will write more about it when I get closer to it. He is a larger than life type of guy!
Genetic Counselor - Has worked with my Oncology team to determine if I have any syndromes or if any of my cancers are the results of genetics. So far, all my testing has shown no genetic issues but this is an area that I am very focused on. As I say, I have "Burt's Cancer" not "Cancer". Genetic work helps define my cancers within my context of me.
Palliative Care Team - They are responsible for the "Whole Me" and helping me manage my experience with cancer. They act as support (they can add faith-based if someone wants it, but I don't), and can help with symptoms, pain management, mental health, etc. I am a HUGE fan of Palliative Care and think this is one of the great areas of medicine that is not yet fully understood but can be extremely beneficial. The PC Team includes Nurse Practitioners, Nurses, Social Workers and others.
Dietitician - There to help me figure out what foods to eat and what to avoid. I am pretty up to speed on my nutrition and what my body needs so I have engaged with the Dietician but I don't very often.
Financial Advisors/Patient Advocates - When I need it they are there to help me with billing, insurance issues, etc. This is also a very underrated team. After having a disease, how you pay for it is probably the second highest stressor. This team helps to alleviate that stress which improves my mental well being.
I hope the above gives some more background on how we are handling things and the types of support we are getting.