Ruth Gerdes' Story
Possibilities are more than hope. They led me to help, healing and healthy living.
It is possible to a find a primary care physician who will diagnose a carcinoid cancer patient in 10 days. Ninety percent of all carcinoid patients go years with the wrong diagnosis.
It is possible for a primary care physician to challenge a radiologist on a computed tomography (CT) scan, even though it had been read as clear the week before. Without this re-examination, it is likely that the patient would not have been a candidate for revolutionary surgery.
It is possible for a primary care physician to do hours of research in conjunction with a patient so together they can determine the best treatment option for the patient.
It is possible to find a general surgeon who will resect your primary tumors but know your liver tumors require the skill of a liver-transplant surgeon.
It is possible a general surgeon will be the first to recommend consultation with a liver-transplant surgeon that is a step you should investigate. His recommendation will provide you with hope at a time in your diagnosis that you need it the most.
It is possible to identify a liver-transplant surgeon who is willing to draw upon years of experience in liver- and small bowel-transplant surgery, and then combine that experience with a unique technique gleaned from French liver surgeons. His combination of intellect and talent will lead him to offer you revolutionary surgery.
It is possible for a liver-transplant surgeon to recognize you are a patient who can embrace and commit to two liver resections - and work hard at getting well, even when it hurts.
It is possible for a third-year medical student to be the catalyst who brings together a patient, a primary care physician, a general surgeon and a liver-transplant surgeon to collaborate in achieving care not only for one patient but also for many others needing Hepatobiliary surgery.
It is possible for a patient to survive three major surgeries in five months, become tumor free and live a normal active life. It is possible for that patient to go on to become an advocate for carcinoid cancer patients, as well as any person facing a liver disease.
It is possible to receive personalized treatment overseen by not one but three extraordinary physicians.
I know all of these things are possible because I am the patient who is alive today because of a young medical student and three extraordinary physicians. I am living proof that many small details and a willingness to offer unique visionary surgery by a liver-transplant surgeon add up to a life saved. My name is Ruth Gerdes. Because three doctors checked their own egos at the door, focused on the needs and personality of the individual and diligently worked on the diagnosis and solution to my carcinoid cancer, I am today living a tumor-free life filled with joy.
Carcinoid cancer is a rare, slow-growing cancer. Currently, between 11,000 and 12,000 carcinoid patients are diagnosed each year in the United States, but this number has been increasing annually. Only about 10 percent of carcinoid cancer responds to chemotherapy or radiation. Surgical removal of all visible tumors is the optimum treatment for carcinoid cancer. That is a daunting realization when you have 22 tumors in your liver.
Let me introduce you to three physicians. Michael Zaruba, MD, of the Auburn Family Heath Clinic is my primary care physician from Auburn, Neb. Greg Fitzke, MD, of Lincoln Surgical Associates, PC in Lincoln, Neb. is the general surgeon who performed my bowel surgery that confirmed carcinoid cancer. Jean Botha, MD, director of Hepatobiliary Surgery at Nebraska Medicine is the liver- and small bowel-transplant surgeon who envisioned what is possible.
I had no symptoms or indication of cancer. My carcinoid cancer tumors did not release high levels of hormones, so I did not have carcinoid syndrome. My cancer was found incidentally after I developed an infection from a procedure I had done in October 2006. A magnetic resonance image (MRI) to rule out blood clots of the lungs showed liver lesions. This set off a string of tests to try and unravel the mystery of the liver lesions.
My first test was a CT scan of the abdominal area. We were told that it was clear. For another week we did test after test; each one showed no reason for concern. Dr. Zaruba was very diligent through all of this. He would call me with test results, and then he would set up the next test. After a grueling week of tests, and nothing making any sense, Dr. Zaruba decided to go back to the original CT scan. He pleasantly, but firmly, insisted that the imaging center re-read that scan. He got a physician on the phone who agreed to read the scan again. In a matter of a few short minutes, he apologized to Dr. Zaruba. Whoever looked at the scan the first time had missed what he believed were two tumors. One tumor was in the mesentery and one in the small bowel.
On Dec. 28, 2006, I had bowel resection surgery at St. Elizabeth Hospital in Lincoln under the care of Dr. Greg Fitzke. Dr. Fitzke was able to completely remove the two tumors in the mesentery and small bowel, as well as take biopsies of the liver tumors. When he got into my resection, he knew there were more liver tumors than what he felt comfortable with trying to surgically remove. Dr. Fitzke was the first person to suggest I explore options that might be available from liver-transplant surgeons at Nebraska Medicine.
Karel Capek, a family member and third-year medical student at The University of Nebraska Medical Center (UNMC), told me about Dr. Jean Botha. Karel had done a surgical rotation under Dr. Botha's direction. He raved about this "liver- and bowel-transplant doctor many believed to be one of the best liver surgeons in the world."
Dr. Zaruba also suggested exploring the options for surgery at Nebraska Medicine's renowned liver-transplant program. In addition, Dr. Zaruba talked to carcinoid cancer experts from all over the world on my behalf. It was the consensus of those experts that I was not a good candidate for surgery.
At my first consultation with Dr. Botha, it was apparent to me that we were a good match. Dr. Botha had gone through my medical records in detail before I ever met him. He was encouraging, upbeat and confident but never arrogant. Dr. Botha instilled a peaceful confidence in me. He understood that this was a critical day in my life, and he treated me with compassion and respect. Dr. Botha's surgical offer was novel and unexpectedly right for me. I happened to be at the exact right moment in time and the exact right place to be diagnosed with carcinoid cancer. I knew something extraordinary was happening. Dr. Botha gave me hope.
At this first meeting, he detailed a two-staged surgical approach that was revolutionary in nature. It was a radical and aggressive approach to carcinoid cancer, but it was one he believed was well suited for the slow-growing nature of carcinoid cancer. Dr. Botha developed the idea for this approach from literature published by French liver surgeons. As a patient, it is imperative for us to keep our minds open when facing difficult situations. When you have a surgeon like Dr. Botha, he will provide you with ingenuity and inventiveness of the highest magnitude. Dr. Botha offered me a surgery that intuitively I knew was my best hope. I agreed to pursue his ideas with one caveat - Dr. Zaruba would remain part of the team. Although he had never met Dr. Zaruba, Dr. Botha was open to the idea for one reason - it was important to me.
I had 22 tumors in my liver. Dr. Botha took out all the tumors in the left lobe on Feb. 8, 2007, literally leaving me with a remnant of the original lobe that resembled Swiss cheese. At the end of the surgery, he also performed a ligation of the portal vein going to the right lobe of the liver. No one in the world had done this until just a few years ago. This ligation stimulated the remnant of the left liver lobe to grow. Once the liver had regenerated enough, it was safe to take the remaining portion of the liver.
The second stage of the operation was performed on May 21, 2007. It was a big surgery coming on the heels of two other big surgeries. Dr. Botha's surgical skill was evident in the successful removal of the entire right lobe of the liver and all microscopic disease. That surgical skill was crucial later in the same surgery because it allowed him to resect and patch a portion of my vena cava that also had tumor involvement. Dr. Botha and I had spent enough time together that he knew my wishes. Why go through three massive surgeries if we were not going to have total removal of all visible tumors. After Dr. Botha performed the second liver resection, I was left with about 30 percent of my original liver and all visible tumors had been removed.
Dr. Botha says the surgeries and accompanying research into gastrointestinal cancer taking place at UNMC and Nebraska Medicine are having a profound impact on patient outcomes. I certainly agree that Dr. Botha, his support staff and Nebraska Medicine have had a profoundly positive impact on my life.
A great joy for me is the many other patients who are also getting help from Dr. Botha because of the collaboration developed on my case between Dr. Zaruba, Dr. Botha and Dr. Fitzke. At different times during the course of my ordeal, each of them took the initiative. As a group, they gave me the knowledge and support to make some difficult decisions about my care. Because of the team approach these three doctors share, new patients are finding their way to Nebraska Medicine for all types of Hepatobiliary surgery. I believe their willingness to work in a unique collaborative manner is a model that should be studied and replicated. From electronic sharing of medical records to the ability for all three doctors to see scans simultaneously, they are practicing seriously amazing medicine.
Dr. Zaruba says my case taught him many things. "As a family-practice physician, I have learned more about carcinoid cancer than I ever thought I would need to know in my career," he said. "This case also allowed me to realize how important it is for patients to be active participants in their health care. Ruth was as much a part of the medical team as any of her doctors." I chuckle at this statement. I didn't know there was any other way to approach healthcare. Because of the rarity of carcinoid cancer and the unique surgical approach we were taking, these three doctors were open to working with me in novel ways.
What I have learned as a result of having carcinoid cancer is many things are possible. I have been given a rare gift to go with my rare cancer. That rare gift is three extraordinary doctors who practice serious medicine for the benefit of me, the patient. I have also learned that the gift of healthy living is inside each and every one of us. For good health to happen we as patients must take the initiative in conjunction and cooperation with our physicians.
When you see a revolutionary surgical success like mine, it means doctors, a patient and a hospital all made courageous decisions to go forward to accomplish what is possible - Hepatobiliary surgery at its best.