When Nurse Sarah Latham was diagnosed with a rare colorectal cancer, she did her research and chose UAB for treatment. As dean of the College of Nursing at Jacksonville State University and a former instructor in the UAB School of Nursing, Sarah is well-versed in the clinic and classroom. ”I was willing to go anywhere,” she says. ” I determined the place most likely to save my life—and that was UAB.”
“Something Is Wrong”
Four years ago, Sarah began experiencing frequent and troubling stomach discomfort—abdominal pain and diarrhea—and decided to visit her local gastrointestinal specialist.
I’d had a colonoscopy three years before that was perfectly normal … but my GI specialist, Dr. Amin, listened to me when I said, “Something is really wrong. I know my body.” He said, “Well, let’s do a colonoscopy.” He found a tumor.
Sarah was immediately referred to a surgeon in the area for treatment. When he suggested immediate surgery without obtaining a firm diagnosis, it gave Sarah pause.
As a nurse, that seemed all wrong to me—that you would have a treatment plan without a diagnosis. If you find cancer, you need to look for metastasis before you develop your treatment plan, because it is an important factor in how you’ll proceed.
The surgeon also balked when Sarah mentioned she’d like to get a second opinion.
If a physician or healthcare provider resists a second opinion, that’s a red flag. He was a little bit disrespectful and said, “Well, you can go to UAB, but they’ll tell you the same thing.” As it turned out, they told me the opposite.
Sarah left her appointment and immediately began researching her condition.
I very aggressively began learning everything that I could about cancer treatment centers. I researched the National Comprehensive Cancer Network (NCCN) and decided that I would only be treated at a member facility because they are the most cutting edge and state of the art. Then I researched literature and treatments for colorectal cancer, and I narrowed my selection to four National Comprehensive Cancer Network institutions that really stood out for their work with colon cancer: City of Hope in L.A., M.D. Anderson in Houston, Memorial Sloan-Kettering in New York, and guess what? UAB.
Sarah went even further, researching specific surgeons with the help of her brother-in-law, an interventional radiologist. They selected their top choices at UAB and Memorial Sloan-Kettering.
We both felt that those two people were probably the best of the best for colon cancer. What we didn’t realize was that I would wind up with a very rare kind of cancer that was not going to be treated surgically.
With the diagnosis she later received, Sarah recognizes that had she stayed with the local surgeon, she might not be alive today.
Had I gone with his recommendation, he would not have known that I had lymph node involvement until maybe too late. The evidence-based guidelines for my kind of cancer at Stage III did not include surgery; outcomes are better with chemo and radiation only. A teaching point for patients is that treatment should be evidence-based, that is, based on repeated studies, common outcomes, and meta-analysis.That was a critical decision early on: that I would only work with a physician who based the treatment plan on evidence-based guidelines.
There was one more factor, in addition to NCCN-affiliation and adherence to evidence-based principles, that Sarah weighed heavily.
At that time, UAB was the only hospital of the four with MAGNET status. As a nurse, I know that it is very hard to achieve MAGNET status; MAGNET status is a type of credentialing that suggests you’re going to get the absolute best nursing care possible, and that in fact was my experience.
“Is It Malignant?”
With her choice made, Sarah began making calls.
I self-referred to UAB, which I find amazing and wonderful because some medical centers will not allow you to do that. I was seen at The Kirklin Clinic very quickly—the next week. At the time, they did a biopsy, but here’s the most wonderful thing on earth—they had a pathologist in the room during the procedure so that when the gastroenterologist sampled the tumor, he was able to look right then, right there at the cells and make a diagnosis. I asked if it was malignant and he said, “Yes, it is.” Knowing right then really helped me. I have to tell you … any patient will tell you … the waiting is agony.
During her appointment, Sarah also underwent an endoscopic ultrasound to identify whether her lymph nodes were affected.
It turns out that I did have a lymph node that was involved, and they could actually biopsy it during that procedure. Think back to the local surgeon: He didn’t even consider an endoscopic ultrasound. The lymph node was not palpable, so he would not have found it. I could have had surgery, but still had cancer. Having the pathology report immediately was something I thought was absolutely, very, very patient-focused.
On her first visit, Sarah had an endoscopic ultrasound, biopsies, and a meeting with her surgeon.
I found the scheduling to be remarkable. My surgeon had the pathology report immediately so we could start deciding what our options were and what we were going to do.
“I Was Blindsided”
The pathology report revealed not only that Sarah’s tumor was malignant, but also that she was facing a very rare cancer.
My tumor was squamous cell instead of adenocarcinoma. Squamous cell is a completely different kind of cancer, and it is very rare in the location where I had mine. It is usually associated with gynecologic cancer, and I had not even thought of that. My surgeon said to me, “Before we do anything, we have to rule-out GYN cancer.” Think again back to my experience with the original surgeon: He did not have a clue that we needed to look at my uterus and cervix. I had not considered that my tumor might be a metastatic lesion; if there is a primary tumor somewhere else, then your prognosis is poor. I was prepared to hear the tumor was cancer, but I was blindsided to learn that I might have widespread metastasis.
The surgeon said he would get me an appointment for GYN biopsies the next week.The nurse, Suzanne McNeil, heard me say, “Oh my God, I don’t think I can wait a week.” She said, “Give me just a minute.” She advocated for me. She got on the phone and was able to get me worked in with a GYN oncologist that day. It was the most powerful demonstration of patient advocacy that I can even imagine. She knew how to work the system in a positive way to advocate for the patient.
Sarah’s cancer was not gynecologic or a metastatic lesion.
The experience that I had with Dr. Barnes in GYN oncology was awesome. In fact, he called me the next day, on a Friday night at 7:30 p.m., to tell me that he had gotten the pathology report back and I did not have GYN cancer. Those are examples of advocacy for the patient, of kindness. To me, I had selected those care providers because of their competence and because I had the best possibility of a good outcome. But when I got to these highly competent people, they were also caring and compassionate, and that is the perfect combination. It was absolutely unbelievable.
Trust, but Verify
With Sarah’s strong healthcare background and the fact that her cancer was rare, she knew a second opinion was the necessary next step.
I told the team at UAB that I really trusted them, but I have always been taught that a second opinion is appropriate, especially if your condition is rare. It was critical to me that I be part of the decision-making process, and UAB encouraged that.
Sarah chose Memorial Sloan-Kettering in New York for her second opinion and began lining up her appointment. The surgeon in New York said she’d only need to send pathology slides.
I called Suzanne McNeil at 1 p.m. on a Monday to ask her to mail my pathology slides. Sloan-Kettering called me at noon on Tuesday and said that they had arrived. I was stunned that Suzanne had stopped immediately in the middle of her busy day and overnight mailed my slides. That is stellar customer service, exceeding my expectations. Who would go to that kind of trouble and expense? UAB did that for me.
Sarah and her husband flew to New York immediately and went through the same diagnostic tests they’d encountered at The Kirklin Clinic.
Everything they did was what they did at UAB, which made me feel good. Then the surgeon began quoting evidence-based guidelines to me, which were the exact same things that the UAB surgeon had said, almost verbatim. I said, “Okay, this is the right diagnosis, and we know what the right treatment is. It’s not surgery for me. It’s chemo and radiation.” Then the surgeon at Memorial Sloan-Kettering said, “I’m happy to treat you, but you need to look up a guy named Marty Heslin at UAB, because he is as good as I am and you will get as good of treatment from him as you get from me.” Guess who I had seen at UAB? Marty Heslin.
“How Many Cases?”
Sarah’s surgeon at Memorial Sloan-Kettering had one more task for her.
He said, “The one thing you’ve got to find out before you commit to a treatment, because your cancer is so rare, is how many cases they saw last year at UAB. This is so rare that even cancer treatment centers can go a whole year without seeing one like yours. If they didn’t see anybody last year, we might want to look at other options for you.” I said, “So how many did you see at Sloan-Kettering?” He said, “I saw ten.” When I got back to Birmingham, I asked the same question, and the answer was 12. I knew that I was in the right place with the right treatment.
A Loyal Fan
From the initial finding of the cancerous tumor, to going through a diagnosis, and determining the treatment, the things that make me such a loyal fan of UAB and The Kirklin Clinic are:
- A. Most importantly, they are delivering the highest quality care possible that is based on evidence. Evidence-based treatment gives you the best patient outcome.
- B. UAB is the only MAGNET hospital that met the other criteria that I wanted. MAGNET status is an indicator that you’re going to get superb nursing care and in fact, that’s exactly what I got.
- C. What also made it magnificent for me was that the individuals that I interacted with were kind and caring, and just as importantly, they were efficient and were patient advocates. If they knew a way to make something happen positively for me, they went the extra mile.
They encouraged my participation in the decision making. They respected that I wanted to be sure before we started, and to contrast that with the response that I got from the original surgeon when I began to try to talk diagnosis, treatment, biopsies, and looking for metastasis, he seemed offended. At UAB when I talked the lingo, they welcomed it and told me anything I wanted to know. There was a night-and-day difference. The philosophy of the institution permeates the care, because at UAB they want you to be as well informed as you can be. They want you to participate in the decision making. They’re not threatened or challenged when they have a well-informed patient. I’ve been a nurse for almost 40 years and I know that is true.
When I learned I had cancer, I began working my offensive plan. I set out to find the best team of doctors and nurses, with the best “track record.” My search was deliberate and methodical without regard for location … I was willing to go anywhere. Through an objective evaluation, I determined the place most likely to save my life—and that was UAB.
“Gentle, Kind, and Encouraging”
After her diagnosis with her team at The Kirklin Clinic, Sarah began a five-week chemotherapy and radiation course at UAB Hospital.
I had two weeks of in-patient 24/7 chemotherapy and, unfortunately, two more weeks of hospitalization from complications from the chemo. The unit manager, Faye Williams, leads a phenomenal team of nurses. At one point, I had a “near code” situation and the Rapid Response Team was there within minutes; I saw my kind, gentle nurse run for the crash cart and begin emergency procedures. My specialty is critical care, and as I watched that coordinated team effort during the crisis, I actually relaxed thinking, “These guys really know what they’re doing!”
My radiation oncologist, Dr. Jacob, could not have been better. The people were so kind. Even the parking attendants were gentle, kind, and encouraging. My nurse in radiation-oncology, Sandy Brant, called me at home, sometimes in the evening, to check on the severity of my side effects. My family and I went into treatment aiming for a cure, and I decided that I could put up with anything if there was a possibility of remission.
A Happy Ending
Today Sarah’s cancer is in remission, and she lives each day with hope and a strong faith. Sarah lives in Gadsden with her husband Joel; They have two adult sons and a daughter-in-law.