Amy Nutial

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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Articles

I’ve always received impeccable care at my cancer center, but a recent experience made me feel like I was no longer a priority. 

Do You Ever Question Your Cancer Care?

I think a lot about how I felt before my cancer diagnosis in 2018 and all the changes I had been making up until that point of my diagnosis. I often wonder if those changes helped with my prognosis.		 

Years before I was diagnosed, I had been reading up and taking notice of all the chemicals that are in everyday products we had been using on our bodies daily. We transitioned to natural soaps, shampoos, lotions and cleaning products because I knew some of the chemicals in these common products could disrupt hormones. I also had read that certain products had chemicals that had been linked to cancer.	 

I also made changes regarding the food that we ate. I paid attention to which fruits and vegetables had the mostpesticides and chose to buy organic to help limit our exposure. I started buying organic whenever I could for the rest of the foods that we consumed, and made a choice to switch to a vegetarian diet on Thanksgiving 2017, almost exactly a year before my Nov. 1, 2018 cancer diagnosis.		 

About a year before the diagnosis, I started to notice changes in my body. I noticed how exhausted I was at the end of each day, and many nights I would fall asleep as soon as I would lie down on the couch to relax. It was like I was in my first trimester of pregnancy and tired all of the time. I shrugged it off as work stress.

I also started to notice that I had facial flushing. Sometimes the flushing would be after I ate, but I assumed that since my mother would get red sometimes after eating certain things that it was the same for me. Then the flushing started to change and would happen even when I wasn’t eating. I chose to not think much about the flushing and just pushed it off. I also noticed I started having heart palpitations off and on, but once again, I pushed this off as work stress.	

I can’t go back and change how I handled all of those changes that were happening to my body, and don’t even think my nurse practitioner would have figured out that those were symptoms for neuroendocrine cancer. I have read that the disease can take anywhere from five to seven years to be diagnosed because often the symptoms mimic other diseases. 

When I reflect on it all, my intuition was steering me in the right direction. I think with all the changes I had made for my family and myself, it would not have changed my diagnosis. I know that it took years for my tumors to grow, so while all these changes did not stop my cancer, I feel that they have helped me thrive with my cancer.

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Before being diagnosed with neuroendocrine cancer, I started to live a healthier life and took notice of some concerning symptoms. 

During the Pre-Cancer Days, My Intuition Pushed Me in the Right Direction

Nov. 1, 2018 was the worst day of my life, one I will never forget. I had received those three little words nobody wants to hear: “you have cancer.” My diagnosis was a stage 4 well-differentiated neuroendocrine tumor in my small intestine with metastases to my regional lymph nodes. I had an emergency surgery two days prior for a bowel obstruction that come to find out was my primary tumor.

I was shocked, but not surprised since it was always in the back of my mind for a few years. I always joked with myself that the “healthy one” in the family would be the one who got cancer. I believe when you are a patient with cancer, you go through three stages of trying to cope with a diagnosis.

The first stage was full of rage and anger. I went through the “why me” and “what did I do to deserve this” stage of things. When I was told the news that I had cancer, it was like my entire 42 years of existence on this earth went through my mind. I then switched gears into thinking of all the things I was going to miss out on when my children were adults and how were they going to cope without having a mother anymore. I worried my husband wouldn’t know what to do without me. Would he spiral into a depression and never find his way out?

The second stage I went into was planning mode. I made sure my husband knew what I wanted planned for my funeral. I made sure he knew where I kept important papers and what bills got paid automatically and which ones he would have to pay manually. I was trying to plan so that my death would not cause any more distress and somehow in my head make it easier for him when I was gone.

The third stage is where I am at now in life, and it’s the best stage. The only cure for neuroendocrine cancer is surgery and after two surgeries, it is still hanging out in some lymph nodes. Getting those lymph nodes removed and being deemed cancer-free would be like finding a needle in a haystack, so at the present time, we are watching and waiting.

Despite my cancer diagnosis, my prognosis doesn’t have to be what science says it is going to be. I decided to not let my cancer define me and I put it to the back of my mind as best as I can. I decided to live, really live. I am now doing things I never thought I could or would do.

Luckily for me, I am a runner. Right before my diagnosis, I switched to trail running and I think it couldn’t have found me at a better time. Trail running for me is a form of healing. When I am out in the woods running along, all my worries escape me, and a sense of peace and calm overtake me.

I urge anyone with cancer to go outside their box and try new things. Find what your purpose is and what makes you happy and just live your life, don’t let cancer take that away from you.

When I was first diagnosed with a stage 4 neuroendocrine tumor in my small intestine, I went through three stages of coping with my cancer: anger, planning and living life.

Amy Nutial

Do You Ever Question Your Cancer Care?

During the Pre-Cancer Days, My Intuition Pushed Me in the Right Direction

3 Stages of Coping With Cancer: There Are Better Days Ahead

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