It was no secret, for most of 2016 I was feeling like absolute crap. I had little to no energy and I was suffering from severe stomach pains daily. I had been to my doctor who suggested everything from IBS to food allergies as the cause.
Finally, around the middle of April, I couldn't take it any longer and I asked Alan to take me to the ER at Beaumont. I ended up staying in the hospital for 3 days, where their diagnosis was diverticulitis with a treatment of heavy antibiotics. They also noted that they had seen "some little spots" on my liver in the CT scan and said that it was probably nothing, but I might want to get an outpatiemt MRI to see it in more detail.
Around 3 weeks later, after fighting with my insurance company for authorization, I was finally able to get the MRI. The results showed something small on my pancreas that hadn't shown up on the CT, and also showed that what ever was on my liver had gotten bigger. I was told to come back for a biopsy.
The week of the biopsy was agonizing for me, and I worked from home that week while awaiting the results. When the doctor finally called Friday afternoon with the results, I was in shock. The doctor said he couldn't really give me much information since he was not an oncologist, but the few buzzwords he did say were probably trending on google over the next few hours as I googled them in different combinations. He confirmed my availability to come back to the hospital and meet with an oncologist Monday morning, and I was left alone with my thoughts until Alan got home from work.
Over the weekend we broke the news to our parents and siblings and did as much online research as possible. Monday I went to my appointment accompanied by Alan and both of our parents. There, we were told that Neuroendocrine Cancer is extremely rare, only accounting for about 1% of all pancreas tumors. My case was even more rare since my tumor was classified as high grade, small cell, and poorly differentiated. Essentially this translated to aggressive, fast growing, and inoperable. My disease was also classified as stage IV as it had metastasized to the lymph nodes near my liver. Their recommendation was to start on chemotherapy as soon as possible. They set me up with a series of appointments for the rest of the week, and scheduled my first chemo appointment one week out.
The next day (Tuesday) I underwent surgery to install a medical port in the left side of my chest. The purpose of the port is to make it easier to draw blood or run an IV rather than poking my arms 20 times. I was also went for a brain MRI Wednesday and a full body PET scan Friday to look for any additional growth.
Throughout all of this we continued to do our own research and found that there was one doctor designated as a NET specialist in the entire state. Luckily, we were able to get an appointment with Dr. Philip Philp at Karmanos for Friday, May 20 for a second opinion before starting chemo at Beaumont. After reviewing all of my medical records sent over from Beaumont he told us that he agreed with the diagnosis, but disagreed with the treatment. He said that the specific chemotherapy drugs that I was scheduled to receive the next week were for standard Pancreatic Cancer, and that they were not effective for NETs. I then had to make the decision between continuing with the original treatment plan laid out for me, or switch my medical care over to this new doctor. Karmanos was able to squeeze me into the schedule for the following week so that there would be no delay in starting treatment, and I cancelled all remaining appointments at Beaumont.
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