The morning of Wednesday, December 16, I went to the hospital for an abdominal CT scan ordered by my ob/gyn as a pre-op procedure for the removal of my left ovary. Surgery was scheduled for Monday, December 21. Following the CT scan, I met with my ob/gyn for a pre-op consultation regarding the removal of my ovary, which has a 2-inch mass on it. "Dr. La" (ob/gyn) gravely gave me the news that my lower torso ailments were no longer of a gynecological nature...in addition to the mass on my ovary, something is wrapped around my colon,I have multiple lesions on my liver and something in my small bowel. He apologized for being blunt, but wanted me to know that things do not look good. Stunned, I asked him what I should do, and he said I should see a surgeon. He made a phone call to a general surgeon, "Dr. T", and asked her to see me immediately. Fortunately, she was able to see me that morning. Before I left his office, he asked me a key question...are my hot flashes accompanied by red flushing on my face? They are.
I numbly sat in Dr. T's office, filling out the required paperwork, alone (I saw no need to have family come with me for a routine procedure) and crying, thinking that my parents didn't deserve to lose another child (my brother died at the age of 3 from a heart condition) and that I wasn't ready to die and leave my husband and daughter. Two of Dr. La's staff members came to check on me and offer support, and later Dr. La came by as well. I think they were as shocked as I.
I found Dr. T to be very caring and compassionate and she diagnosed me with carcinoid (a very slow-growing cancer, which originated in my mesentery) and carcinoid syndrome (the cancer metasized to my liver and produces hormones which cause extreme hot flashes with a red face, called "flushing"). Because the cancer is slow-growing, Dr. T told me to relax. It had taken the carcinoid at least 5 years to get to its current state (that's how long I had complained to my primary care physician about having stomach problems). She also said that I would have to go through a series of tests to confirm her diagnosis, and that surgery may or may not be an option for me because of the size and location of the tumor in my mesentery.
Dr. T referred me to an oncologist who offices in OKC, but comes to Yukon every Wednesday afternoon. As luck would have it, December 16 was on a Wednesday, so I met "Dr. Ch" later that afternoon. It wouldn't have mattered...I would have driven to the ends of the earth for that appointment...
My husband, Danny, was in Ft. Worth that day, so I had to give him the good news (no surgery on Monday) and the bad news (I have cancer) over the phone. I called my daughter, Jessica, to come home from college to take my parents to a doctor's appointment which was scheduled for the same time as my oncologist appointment. When she got home and I told her about my disease, she took over my online research, and decided it might be a good idea for her to go with me to my appointment. I made the difficult phone call to tell Mom that I wouldn't be able to take them to Dad's appointment because I had an appointment at the same time due to what the CT scan showed that morning. "Is it cancer?" she asked and I dodged the question by telling her that it's possibly carcinoid.
Jessica and I met Dr. Ch at 4:30 that afternoon, and as her nurse took my vitals, she rambled on about this and that and how chemo is done right there in the office and so on. Chemo. This journey began with a mass on my left ovary and now I'm hearing about chemo??!!
Dr. Ch was very informative and told us the same information we had found in our research that afternoon. She explained the tests and scans that would need to be done within the next few days to confirm the diagnosis. Testing began December 20-21 with a 24-hour urine test called "5-HIAA". The test checks for an excess amount of a substance made by the body when it breaks down serotonin. An excess amount of that substance could mean that the body is processing extra serotonin, which is commonly excreted by carcinoid tumors. The results of my 5-HIAA test indicated that my hydroxyindoleacetic acid level is high.
December 23, I went to Baptist Medical Center in OKC to have a liver biopsy. Hating needles and having to have an IV, I became a pin cushion with bruises that lasted several days. It seems you can tell by looking who will be gentle and who will be a vampire, and I definitely had 2 Victorias that day!! Finally on the 7th or 8th try, the nurse was successful, and the biopsy went well, except, of course for the diagnosis of carcinoid tumor which had metastasized. Synaptophysin and chromogranin both tested positive, and the measurement of chromogranin has been referred to as the "gold standard" for confirming carcinoid. I'm not sure what synaptophysin is.
December 29-31, I had an octreotide scan to confirm and precisely locate the tumors. The 29th involved an (IV) injection of octreotide, and the technologist decided it might be wise if I lay down for the injection (after my reaction to the news of an IV, along with the bruises on my arms and hands from the week before). The technologist was very kind and distracted me with pleasant conversation, and before I knew it, he had injected the octreotide. Octreotide attaches itself to carcinoid tumors, and during a scan 24 hours later, the tumors lit up, allowing a diagnosis of their location(s). In addition, octreotide is injected in patients with carcinoid syndrome to counteract the symptoms caused by the hormones produced by the tumors. I noticed relief of my symptoms from the octreotide which had been injected for the scan, and that was nice.
So, with all the tests and scans out of the way, I spent the rest of Christmas break anticipating my next oncology appointment on Jan. 6, and hoping I wasn't full of tumors. I wasn't being negative, just trying to be prepared.
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