2017 started with me taking an iron supplement and ended with me recovering from surgery to remove a neuroendocrine carcinoid tumor and four feet of small intestine at Barnes Jewish Hospital in St Louis. A couple of years ago, I was rejected trying to donate blood because of a low iron test. I assumed I’d pushed myself too hard running and just needed to eat a little more iron, so I had a couple of steaks and tried again. And got rejected again. Time for a physical. Diagnosis was fairly simple, extremely low iron stores, so I started taking an iron supplement twice a day. And eating better: more beans, red meat and other iron rich stuff.
I was referred to a hematologist/oncologist at the Carle Cancer Center and he started on tests to see what was causing it. Over the course of 2015, I had several tests, including an ultrasound of my abdomen and a bone marrow sample. They all came back normal. And my iron levels came back up to near normal with the daily iron supplements.
In August 2016, my hematologist left Carle, and I was assigned to a new doc. She has been more active in testing to see why my iron was low. In early February 2017, I had an endoscopy/colonoscopy to make sure I wasn’t bleeding internally. I wasn’t. I also had some other tests, but nothing was conclusive.
Then, in early April, I went in for an annual physical, mostly to get Part C of the BSA Annual Health and Medical Record filled out so I could go with R to Ransburg Scout Reservation. My primary care provider leads a group of residents, so I saw some random overzealous resident. She filled out the BSA form without any questions, but noticed an old note in my record about a gall bladder mass. She ordered an ultrasound to get a current look at my gall bladder. That was done in early May. It didn’t show much change in the gall bladder polyp, but it did show:
Masslike structure in the retroperitoneum or root of the small bowel mesentery measuring 1.8 x 3.5 x 1.6 cm of indeterminate etiology, possibly pathologic lymphadenopathy. Recommend further evaluation with CT.
The further evaluation with CT happened in late May and showed:
There is a well-defined soft tissue mass in the base of the mesentery measuring 3.4 x 1.6 x 1.8 cm (transverse, AP, vertical). In retrospect there is a previous soft
tissue density in the base of the mesentery slightly more inferiorly located measuring 1.4 x 1.6 x 2.7 cm. Remaining portions of the abdomen and pelvis are unremarkable.
So, I have a mass. More tests to see if it’s leukemia or lymphoma, those came back negative. Then a PET CT to see if any other lymph nodes are large or light up brighter than other nodes. All looked normal.
Time for a biopsy! But, I have a complicating factor of low platelets which means I have a high risk of bleeding. My hematologist decided to try a treatment called IVIG, which involved 2 days of laying in an outpatient hospital bed getting a bunch of fluid pumped into my arm. It made me tired and sick and did not raise my platelets, it actually drove them down. So, when I went in for my first biopsy attempt, they sent me home. For the second biopsy attempt, they had a unit of platelets ready to be infused, if I needed them. I needed them. Laying awake in a CT scanner while a doctor pokes a guide wire from the top down to a small mass near the back of your body is a bit uncomfortable. As is having the doc ask the nurse to call the lab and ask how many samples he’s supposed to get AFTER he’s extracted the first sample. The biopsy results were fairly clear:
Mesenteric mass/nodule, core biopsy: Neuroendocrine tumor (carcinoid), grade 1.
Comment: Neuroendocrine tumor composed of nests of ovoid cells with stippled nuclear chromatin and moderate to scant amphophilic cytoplasm.
Next up (in mid-August) was another CT taking a look from chest to pelvis, that was negative for anything other than the already known tumor. A week after that, I had an octreoscan to see if there were any other areas that accumulated the injected radiotracer, and there were not. My next referral was to the Digestive Health/Cancer surgical clinic at Carle and a camera endoscopy. The surgeon was worried about the location of the tumor, possible involvement of the main blood supply to the small intestine and the fact that we hadn’t found the “primary” site. He deferred to further testing and a “wait and see” approach to the mass. The camera endoscopy was able to find a small lesion and likely primary site in my small intestine.
My hematologist/oncologist decided to ask for a “second opinion” referral from my insurance. Aiming for the best, she referred me to a doctor at the Mayo Clinic in Rochester, MN. We had an appointment scheduled, but had to wait on final approval from insurance, which could take up to 15 calendar days. After the full 15 days, the referral was rejected as it would be “out of network”. So, next referral was to a doctor at Barnes in St. Louis and another up to 15 day wait for insurance approval. While waiting for that, the MRI was done and showed nothing new.
I finally had approval to visit the doc at Barnes at the end of October. It was a 30 min appointment with a visit with a resident and a short visit with the surgeon. He went ahead with scheduling surgery for mid-November. I did the pre-surgery visit that afternoon, strangely called “CPAP“, which was mostly a series of blood draws, a visit with an anesthesiologist and some instructions for surgery prep.
The first surgery date was cancelled due to the insurance approval not being completed in time. And, then the insurance company informed us that my primary care provider needed to be the one to submit the pre-authorization request, not the surgeon at Barnes. So, reset the 15 day clock and try again. After a couple weeks of waiting, surgery was rescheduled for mid-December. Because of my history of low platelets I had to see a hematologist at Barnes. I just happened to wear a Hoopeston tshirt to the appointment and her first question for me was “Are you from Hoopeston?” She had spent a couple years of high school there and was inspired to go into medicine by a teacher that was there when I attended about a decade later, small world. She prescribed a “steroid pulse”: 4 days of steroids to raise my platelet count. I also had an additional CT scan while I was in St. Louis, just to get a more recent image of the tumor. The radiologist was also able to visualize the lesion in my small intestine on that scan.
We had to be at the hospital at 5:30 am to check in for a 7:30 am scheduled surgery. Due to the wonders of modern medicine and narcotics, I don’t remember anything after speaking with the nurses and surgeon in the prep area until waking up in the recovery room and riding the elevator to my room. The initial prediction was that I would spend 3-4 days in the hospital before being discharged, but I ended up staying for 7 days due to some issues. I got to know some of the nursing and health care tech staff really well over that time.
I’m glad to be home, free of my mass and with a small intestine that is a few feet shorter than before. I’ve had excellent care from my wife, it’s amazing what 20 years of nursing experience and teaching can do. Sometimes she is Nurse Ratchet, but most of the time she’s a caring and helpful spouse. I also have to thank my parents, in-laws and aunt and uncle for all the help with the boys. And my Pack 98 scouting family for being so understanding while I’ve been out of commission as Committee Chair and Assistant Den Leader.
Now, we’re waiting to go back for a followup appointment in early January and getting back to work later in January. It will be a couple of months before I’m 100% again, but maybe I’ll be back to running a 5k in time for the 2018 Sweetcorn Festival.