Do You Ever Question Your Cancer Care?

Do you ever question your patient care? It’s something I have been asking myself a lot lately.

I think back to when I was told I had cancer on Nov. 1, 2018. I was sitting alone in my hospital room when my surgeon came in to give me the results of my biopsy from my bowel blockage surgery. When she told me, “You have cancer,” I immediately vomited. This was no easy feat since I had a nasogastric tube pumping bile from my stomach. I started crying as well but I had nobody there to comfort me.

I later found out that my husband had previously spoken to my surgeon and asked her not to tell me my results unless a family member was present. I was told something that shattered my world, yet my emotional wellbeing did not matter to my surgeon. I felt like she did what fit into her daily schedule and was easiest for her.

I was diagnosed with a neuroendocrine tumor (NET). Of course, I had to be diagnosed with a rare cancer that had me feeling hopeless. I live in a small rural community, and I knew that I would not be seeing the one and only oncologist in my area for my cancer.

I was fortunate enough that my husband’s coworker’s wife was an oncologist and someone I have previously met. My husband was immediately on the phone calling to consult with her about my diagnosis. We made an appointment with her to follow up when I was released from the hospital.

When I got home, I started doing my own research and found that I was lucky enough to have two very good NET cancer centers within two hours of my home. I followed up with my husband’s coworker’s wife and she put my mind at ease. She explained everything so that I could understand what I might be facing but she also wanted to refer me to a NET specialist. She offered me the two options that I came up with and I felt like I was on the right path.

I had to wait two months to follow up with the surgical oncologist at my NET cancer center. I think those two months were the most stressful two months of my life. I was a newly diagnosed cancer patient with cancer still in me because the rural surgeon I had was not prepared to deal with my cancer when she opened me up to repair my bowel blockage.

I had nothing but problems from the small rural hospital getting my medical records and tumor slides to my new NET cancer center. Once I met with my surgeon, I was put at ease. Ironically the original surgeon who did my first surgery trained under my new surgeon, I took that as a sign I was in the right place. He was not impressed with the nasty incision she had left me and had even went as far to say, “I thought I trained her better than that.”

My care at my NET cancer center was impeccable for the first three years. It was always very thorough and never made me feel rushed at all. I wasn’t allowed to leave until all my questions were answered.

But then my last visit in March left me questioning my patient care. My surgeon was wonderful as always, but my endocrinologist made me feel like my care was lacking. I think I spent 10 minutes with him, and he seemed overwhelmed and preoccupied. I didn’t get the usual treatment that I was accustomed to the previous three years.

I am doing extremely well considering the circumstances I have, but does that mean my care should be less? I found out when I was scheduling my next six-month appointment that I wouldn’t even be seeing my endocrinologist, I was being passed off to a physician’s assistant. I am truly disappointed that I wasn’t even told this by my endocrinologist and feel like because I am doing so well that I am not important enough to see him anymore.

I don’t feel like I am being treated as a whole. Nobody talks about nutrition with me or discusses my emotional wellbeing. Isn’t cancer care about the whole wellbeing?

Maybe I am being overly sensitive, but I do not think I am. I think I need to take some time and do some more research into other NET cancer centers to see how their approach is. My takeaway from the whole experience is that nobody had my best interest but myself.

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