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.