Finding the right surgeon

The radiologist’s report described the “mass” in my belly as “well-circumscribed,” possibly a benign tumor but it also said “malignancy” could not be excluded. Our next move, visit the respected gastrointestinal cancer surgeon affiliated with our HMO. My wife Jan, a nurse with nearly 30 years experience in the same healthcare group as the surgeon, had checked around. We heard good things. Consistent with those reports, we found  Dr. B to be a gentleman with good bedside manners, knowledgeable, and by all accounts a fine surgeon. After a thorough physical exam we walked over to the doctor’s computer and looked at the CT scan pictures. He showed us where the tumor was attached to the outside of my stomach and told us he was quite sure it was a gastrointestinal stromal tumor or GIST. The surgeon’s assessment was more definitive than the radiologist’s and contradicted the radiologist who had indicated the tumor was between the stomach and liver not attached to the stomach. We would still need a biopsy to confirm the diagnosis but we were ready to hear the surgeon’s treatment plan based on his belief we were dealing with a GIST.

Because the tumor was about five centimeters in size, the doctor told us I would need to take a pill everyday for about three to six months in order to shrink the tumor. When the tumor was smaller, he said, it could be removed using a laparoscope. That’s a minimally invasive procedure with a speedier recovery than getting cut open. But he wouldn’t do the surgery himself. Instead, he would supervise a younger doctor with more experience doing laparoscopic operations. And, trying to reassure us, he said if the minimally invasive approach weren’t going smoothly, he would step in and switch to the open procedure. This was not what we wanted to hear. And we still needed to get a biopsy. Time for a second opinion.

I talked to an old friend who is a highly regarded oncologist at the University of California in San Diego. My conversation with her was eye opening. First, because I had a benign spinal tumor 19 years earlier and that type of tumor—a schwannoma—was mentioned as a possibility for this tumor, I was deluding myself thinking this one must be benign too. After all, some GISTs are also “low risk” or benign. Wrong approach. Our friend the oncologist told me in no uncertain terms to get moving on surgery. She gave me the names of three doctors to contact for a second opinion. And, she told me to get a surgeon with specific experience treating tumors in the upper GI area where mine was located.

We often use bellicose language when talking about cancer. It is a fight, a battle, war. And based on my own experiences and those of many we know who’ve fought the fight and continue to do battle, the terminology is appropriate. But it’s not just the bio-medical combat with the disease; there are financial and administrative skirmishes that are another front in the war on cancer. We had our first encounter on that front when we went for a second opinion outside our HMO network.

To be continued.

My experiences are in many ways different from what others with cancer endure. This is one patient’s experience, nothing more.

Living with cancer

I have a rare cancer described by doctors as “high risk.” As bad as that sounds, it’s not as bad as it sounds. Thanks to a targeted cancer drug called Gleevec (generic name is imatinib) my “high risk gastrointestinal stromal tumor”--or GIST--has a pretty good prognosis. A very expensive pill I take every day is designed to keep the cancer away.

Small indolent GISTs are considered benign. Not mine. Based on a number of criteria, including size of the tumor and mitotic rate (check your old biology text or follow the link), my GIST was cancer. Diagnosed almost two years ago, surgeons at the University of California Moores Cancer Center in San Diego removed the tumor along with part of my stomach in September of 2017. It’s taken me this long to report about my experiences living with cancer because it’s been difficult to write about. I keep asking myself, will what I have to say be meaningful to readers? With that in mind and the passage of time I believe I have enough experiences and insight to share my observations. I hope by telling this story it will contribute to better understanding the dreaded diagnosis of cancer.    

The first question I’m often asked is what led to my diagnosis. The short answer is Mexican food. I started having chest pains one evening after attending an afternoon charity fundraiser where they served some of the most delicious tacos I’d ever eaten. So, in the words of one my doctor’s notes, “After dosing with tacos (patient) experienced chest pains and went to the emergency department for evaluation.”

When you show up at the emergency room complaining of chest pains they don’t make you wait. I was rushed immediately to the treatment area and hooked up to an EKG. After four hours that included a chest x-ray, blood tests, a thorough examination and medical history, the ER doctor told me my heart is not the problem. “Follow up with your internist,” he added. So, over the course of the next two weeks I was referred to a gastroenterologist who ordered an abdominal ultrasound that revealed a “mass” growing somewhere in the neighborhood of my pancreas, liver, and stomach. Needing a clearer picture of what was growing inside me, the doctor ordered a CT scan of the area for a better look.

A few hours after my date with the scanner, the doctor called to tell me what the scan showed. The most encouraging words on the radiologist’s report were that it did not appear the mass was on or within the pancreas. But an actual diagnosis would require more tests, specifically a biopsy to find out what type of tumor was growing in my gut.

To be continued?

If you find this interesting and want to read more about my experiences with cancer please let me know. If you think this will be helpful to others, share it widely. Based on your responses I will decide whether or not to continue reporting my cancer chronicles. Topics I hope to cover include the psychological, physical, and financial demands on cancer patients and their families. Of course, my experiences are in many ways different from what others with cancer endure. This is one patient’s experience, nothing more.

-->