I was at work when my cell phone rang. I glanced at the caller ID and saw that it was my mother-in-law. There was no dread, no surprise, because, unlike most sitcom characters, I genuinely love and get along wonderfully with her. Since I was with a patient, I figured I would call her back.
Much later in the day, I finally had a moment to listen to the voicemail. And my radar immediately switched from distracted mother to experienced clinician on high alert. “I just don’t feel right,” the message stated, “maybe it’s just my diabetes or a-fib…can you walk me through it?”
Here’s what you need to know about my mother-in-law: She’s 63-year-old Caucasian female, DM II, chronic a-fib, BMI 32, mild hyperlipidemia, lifetime non-smoker who enjoys red wine and rich foods, has a master’s degree, and is retired from state government. She is happily remarried and travels frequently. I was aware that she’d lost 20 pounds slowly over six months, which she attributed to a new diabetic medication and smaller meal portions, but I did not know her current weight. I learned later that she’d lost an additional 30 pounds over the preceding two months.
My mother-in-law told me she felt very weak and fatigued but immediately tried to minimize her symptoms. “Maybe I’m just dehydrated,” she asserted. “Why would you be dehydrated?” I asked. Diarrhea? No. Vomiting? No. She paused, “maybe I just need some Gatorade.” Now I’m not aware of the mystical healing powers of Gatorade, but I wasn’t buying that.
Fever? No. Chest pain? No. Shortness of breath? No. Abdominal pain? No. Headache, numbness, focal weakness, rashes, bruises, polydipsia, polyuria, temperature imbalance? Nope. I asked if she had checked her glucose recently and it was then she casually mentioned that she hadn’t checked it because she hadn’t gotten out of bed all day. Whaaat? She was too weak to walk. I implored her to call 911.
She was vacationing at her condo in Florida, too far for us to get to her quickly enough from Michigan. Her mother has DM and CAD and has undergone CABGx4 and given my MIL’s risk factors, MI, so hyperglycemic complications were understandably high on my differential. I told my husband that his mother was ignoring my excellent medical advice and, he, also an EM doc, could have a turn talking some sense into her.
She gave him her home vitals: Glucose low 200s, BP 80/40, HR 110s. Still, incredibly, she wouldn’t agree to go to the hospital. My husband decided to simply badger her until she agreed to go. She refused to call an ambulance and instead took a cab, much to our dismay.
After what felt like an eternity, she called and assured us, to our delight, that she was not having a heart attack. She then went on to tell us her WBCs were elevated, as well as “some kind of liver tests” and that they were “ordering some kind of scan.” She’d had no N/V/D or abdominal pain but the elevated WBCs and LFTs in the setting of a hypotensive, tachycardic patient was certainly worth looking in to. We told her to call no matter what time it was with her results.
At 3 a.m., my phone rang. I grabbed it quickly and asked “how are you doing, how is the scan, is everything OK?” There was a long pause, and then my mother-in-law asked me a question that is forever burned into my memory: “They said I have a mass in my pancreas…is that bad?”
I finally understood what books meant when they said “my heart sank.” I tried to keep the trembling emotion out of my voice as I lamely tried to reassure her that we don’t know anything concrete yet and there is no need to Google it until we had more information. She said she was tired and assured me that they were taking care of her symptoms and were admitting her; we would talk in the morning. Then I took a deep breath and told my husband that his mom had a mass in her pancreas. And we cried.
When you tell people you have, for example, breast cancer or prostate cancer, there is generally an attitude (after the initial shock) of “you can beat this.” When you tell people you have pancreatic cancer, you usually get sympathy and sad looks. It is well known that it is a devastating diagnosis and usually carries a very poor prognosis. The five-year survival rate for breast cancer is 91%; 99% for prostate cancer. For pancreatic cancer, the five-year survival rate is only 8%.
Over the past year, I have learned more about pancreatic cancer that I ever expected to. After a whirlwind of biopsies, ERCPs, a percutaneous biliary drain, chemo, radiation with more chemo, horrible side effects, and then a Whipple (complete with vascular reconstruction, 10 and one-half hour grueling operation); my 180-lb mother-in-law was 90 pounds and exhausted. I also learned that outpatient appointments can take frustratingly long to schedule and that outpatient tests don’t come back as quickly as I would like.
I was her kind-but-fierce advocate and navigated her through the system with speed and access to contacts that a layperson could never have accomplished in such a short time. But her biopsy showed an extremely aggressive and invasive form of pancreatic adenocarcinoma and she was wasting away before our very eyes. She went from an energetic world traveler to a confused, cachectic chemo patient in less than two months. It was heartbreaking. I coped by making calls, getting appointments arranged, and learning how to help manage her side effects.
It has been more than a year since that fateful phone call from my mother-in-law. In that time I have personally diagnosed two patients with new pancreatic masses and had one patient with a known history of pancreatic cancer that had been in remission for five years whom I found to have recurrence with extensive diffuse metastases. Armed with my newfound knowledge and old-fashioned empathy, I was able to handle each with kindness, compassion, urgency, and a sense of hope. As EM doctors, this is the kind of care we’ve always strived for.
As EM docs, we will diagnose people with cancer; it is part of our job as expert diagnosticians. It is estimated that this year, 53,070 people will be diagnosed with pancreatic cancer in the US and approximately 41,780 will die from the disease. We will be making some of these diagnoses in the emergency department. We don’t do their chemo, we don’t perform the Whipple, but we absolutely can help.
Five Things an ED Physician Needs to Know about Pancreatic Cancer
1. It’s common—and it’s deadly
Pancreatic cancer recently moved from the 4th to the 3rd leading cause of cancer-related death in the United States and is anticipated to become the second by 2020. Eighty-five percent of patients diagnosed with pancreatic cancer are diagnosed at an advanced stage and are not candidates for surgical treatment, which is currently the only chance for long term survival.
2. Symptoms are vague
Symptoms may include abdominal pain, back pain, weight loss, jaundice, anorexia, nausea, changes in stools, new-onset diabetes and worsening glycemic control in known diabetics. The location of the pancreas makes it less amenable to palpation and the lack of visceral innervation means that pain can be a late or even absent. Jaundice is also often a late finding. Until the tumor invades the biliary tree and causes blockage, jaundice will not occur. Patients who get jaundiced earlier in their course have an increased chance of survival because they are more likely to be scanned and diagnosed compared to those who become jaundiced late. Sadly, many patients will not manifest worrisome symptoms until too late. Keep pancreatic cancer on your radar for any patient with unexplained weight loss, which should be explained.
3. Experience matters
It is important to see oncologists and surgeons who specialize in pancreatic cancer, so your patient can get the most aggressive and up to date care. There are an increasing number of clinical trials for chemotherapy, radiation, gene therapy, and more to target this deadly cancer. Because the survival rate for pancreatic cancer is dismal, a clinical trial may be the best chance at effective treatment. Pancreatic cancer patients who undergo a successful Whipple surgery may have a survival rate of up to 25%, a huge improvement over 8%. A Whipple is a complicated and highly technical surgery. Because of the complex nature of this surgery, experience matters. “Research has shown that patients achieve the best outcomes at ‘high-volume’ hospitals. High-volume hospitals are those hospitals that perform at least 10-16 Whipple procedures per year. The experienced surgical teams at these hospitals have been able to significantly reduce patient risk and complication rates.”
4. Know your resources
Most major diseases and cancers have a leading advocacy and education group. For pancreatic cancer, it is the PANCAN, the Pancreatic Cancer Action Network. The website is pancan.org and they offer resources to physicians and patients. They have the wonderfully audacious goal to double survival of pancreatic cancer patients by 2020 through their Wage Hope campaign.
5. There is hope
Yes, this is a devastating diagnosis with a poor prognosis. But people do survive. At a PANCAN event, I met an 85-year old patient who was a 15-year survivor because her doctors moved quickly, her surgeon was an expert in the Whipple procedure, and she had a wonderful oncologist. When you diagnose the next patient with a mass in their pancreas, please do the following: Sit down and look them in the eye. Tell them what you see and that it could be a serious form of cancer. Educate them that there are physicians and surgeons who specialize in the kind of cancer that they might have and that even if they have to travel some distance, expertise is important. Tell them that moving quickly can significantly improve their chance of survival. And remember that this patient is someone’s family member. That their lives are forever changed the moment you deliver the words “it might be cancer.”
I am surprised by the lack of mention of early referral to palliative medicine in this article. Pancreatic cancer is a disease with complex symptoms which a palliative medicine specialist can help control. In addition, facing this disease and decision making about the various treatment options benefits from psychosocial support, which a palliative medicine team can provide. As a long time EP now also trained and Board certified in palliative medicine I have seen how much can be accomplished to improve quality of life and to support patients facing this devastating disease and their families. Palliative medicine referral is not the same as hospice referral; it is appropriate to refer patients with pancreatic cancer from the time of diagnosis.
My mother had her Whipple’s surgery 33 years ago in 1984. She will be 81 this summer. There’s always hope!