I would like to tell you the tale of a patient who want to fire me but never got around to it. I think there are some good learning points in his story – for him, for me, maybe even for you. Instead of using his real name, I will call this patient Mr. B.
Mr. B was diagnosed with adenocarcinoma of the pancreas two years ago at the age of fifty-three. He had a biopsy confirming his diagnosis a few weeks before Christmas 2020. Staging CT of the chest and abdomen and MRI of the abdomen were consistent with a pancreas tumour encasing the portal vein and celiac plexus. He also had blood and tumour clot in his portal vein. Based on these findings, a hepatobiliary surgeon deemed him a nonsurgical candidate. His cancer could not be cut out.
Mr. B was referred to our cancer centre to talk about palliative chemotherapy. When I saw him, he told me he started having issues a few months prior, that he was gradually worsening. Most notably, he described abdominal discomfort with eating. He had a band-like tightening pain around his mid-section, sometimes radiating to his sides and back. He also had spasms of belly pain. He was constipated which was abnormal for him. His energy level was lower than he was used to.
He and I had a long talk about pancreatic cancer. I told him his cancer was not curable. Pancreas cancer is only curable if it can be completely cut out. Even in best case scenarios where a surgery takes place, the chance of cure is so small. Overall cure rates across the world for all those diagnosed with pancreas cancer are still below ten percent.
We explored our main treatment goals: to improve symptoms and prolong life. He was not interested in knowing how much time he might have left to live. I think he knew time was short, but he didn’t want to know how short. We discussed the use of FOLFIRINOX chemotherapy, which would extend his life by several months. Potential toxicities of FOLFIRINOX were reviewed. I told him we typically treat in two-to-three-month blocks with interval monitoring CTs. We base subsequent decisions for treatment on the results of these CTs.
Mr. B told me I was the first person to tell him his cancer was not curable. Many who read this will ask how is this possible? How is it possible that a person can go through multiple investigations, with many physicians involved, get a diagnosis of unresectable pancreas cancer, and not have a single interaction where the words “not curable” are used???
It happens. It shouldn’t, but it does. When it does, it’s always a little cloudy trying to sort out if those words were said and the patient just didn’t hear them, or want to hear them, or if they were not communicated. Either way, as the oncologist delivering these words, it sometimes turns into a “shoot the messenger” situation. I am the bearer of bad news. I can become someone that is not to be trusted. I can be disliked simply by providing truth and attempts at clarity. I also can be accused of squashing hope. Hope is such a tricky thing. I’ll talk about hope in another post soon.
I could tell Mr. B was distraught during our initial consult. I tried to normalize his reaction for him. He was otherwise a well man up until this point in his life. He had always been fit and strong. That was all about to change. He didn’t have control over his cancer or his life anymore. He shouldn’t even have this cancer. He was too young for this to happen to him. It was all a little surreal for him. I understood. I really did.
Mr. B went on to receive four months of FOLFIRINOX chemotherapy. He had a very good response to treatment with imaging showing a reduction in the size of his cancer. Unfortunately, he also felt unwell on this chemo. He “no-showed” to clinic after his fourth month of chemotherapy, not bothering to call and cancel or reschedule his appointment. He had just had a CT. We were supposed to talk about the results and make a further plan. I had to contact him via phone to determine what he was thinking and what his wishes were. He told me he didn’t want more chemotherapy. I said that was fine. Doing treatment or not is his choice; it was up to him how he wanted to spend the rest of his days.
He stated he still wanted to be monitored. I was willing to do so if further chemo delivered under my care was a possibility in the future, so we set up a monitoring schedule, scanning him every three months with phone call reviews. Looking back, I think this is when our relationship fell apart.
Each time we talked on the phone, Mr. B insisted I treat him with immuno-oncology drugs. I explained there was no evidence for the use of these drugs in his cancer, that we can’t get them. He insisted. I explained again. He demanded I find him a clinical trial with one of these drugs. I explained we didn’t have any of these trials. He didn’t believe me. I tried to explain again. He didn’t accept my explanation. I tried to run through the nuances of trials and his clinical situation. Again, he disliked my explanation.
For the next year, he got scans every three months. I called him after each of those scans to tell him his cancer was progressing. Without treatment cancers tend to grow and spread and that is exactly what Mr. B’s cancer did. Each time we spoke, I offered him the only treatment I could – chemotherapy. Each time he declined, insisting I give him immune drugs. There was a broken record on our tabletop with a scratch right down the A-side causing an inability to effectively communicate. I know he was frustrated with me. I was frustrated with him too.
In the summer of 2022, I received word from Mr. B’s family doctor. He wanted a different oncologist. I welcomed this. Mr. B was not getting what he wanted from me. I knew he wouldn’t get what he wanted from any of my colleagues but sometimes hearing the same words from someone else is more effective than continuing to hear it from the same person.
I explained the process of requesting a new oncologist to Mr. B’s family doctor. Patients must go through the proper channels to do this. There is no way around it. Mr. B would have to fill out paperwork through our patient relations office requesting a new provider. His case would then be reviewed by our management team to determine whether there is a good reason for the request. If deemed appropriate, he would be put in the queue for a different medical oncologist.
I called Mr. B when I received this request to ask him if there was anything more I could do for him while waited for a new oncologist. He said no. I explained the above process to him too. He again requested an immune drug. I again told him that was not possible.
A few more months went by. I found out Mr. B didn’t request another oncologist when he reached out asking if he could have chemotherapy again. He was getting sicker. I made an appointment for him to come see me to discuss his symptoms and treatment. He didn’t show up. I rebooked him the following week. He didn’t show up. I rebooked him a third time. He didn’t show up.
As I write this story in the middle of January 2023, Mr. B is dying. His choice for more chemotherapy was badly timed. He will never receive any more anti-cancer therapy. Would things have happened the same way, in the same timeframe if he would have chosen more chemotherapy earlier? We will never know.
I’ve thought about Mr. B a lot over the last few years. I’m not sure there was anything more I could have done to prevent our trust breakdown. I understand hard feelings developed toward me because I gave him bad news and couldn’t give him what he wanted. Sometimes patients want treatments we cannot access because they have no proof of efficacy. Say what you will about the Canadian health care system but one thing I appreciate is that we can’t just give patients whatever the flavour of the day is on a google search for cancer treatment. Treatments must prolong survival or progression or improve quality of life before we can access them. I believe this so important, especially when we are dealing with drugs that potentially have life threatening side effects.
There are some individuals who don’t trust science or medicine or medical advice. That is their choice to make. We live in a world where individual autonomy is paramount. We’ve seen this over and over again through the Covid-19 pandemic. Individuals make their own choices about most aspects of their lives, including health care. When someone like me has to tell someone like Mr. B his choice is not an option, I imagine it felt to him like I didn’t have his back. In fact, I did. I had his back the entire time. He just couldn’t see it.
Author Notes:
Choices are great, aren’t they? I can choose what I want to wear, how I will do my hair, whether I will have pasta or Thai food for supper. If I have enough money, I can choose if I want to take a holiday and where that might be, what car I will buy, and what neighborhood I want to live in. I get to decide what time I will wake up in the morning and when my head will hit my pillow at night. I can choose to workout every day or have a PJ day on the couch in front of endless Netflix shows.
Yes, choices are great . . . until you don’t have any. Mr. B reminds me of the great privilege of choice. He also reminds me the lack of choice can flip us upside down and inside out. Is the belief we don’t have choice a choice in itself? How many times have you heard a friend say, “I didn’t have a choice”? How many times have you said it yourself? How true is that statement?
Mr. B didn’t choose cancer. He didn’t choose death at the age of fifty-five. Hell, he couldn’t even choose the treatment he wanted. But, he did choose the treatment he didn’t want. He chose not to show up to appointments. And, that is okay.
I often wonder what drives the choices people make. Is it fear or anxiety or denial? Is it a deeper knowing of oneself? Can the driver be curiosity or love or joy?
Life happens. We make choices along the way. Sometimes we think we don’t have choice. I believe there are circumstances where this is true: children get abused; spouses get deserted; cancers grow. But much of the time, we can choose how we react, how we heal, how we survive, and sometimes, even with what grace we die.
I’d like to think we all have it in us to fly with the choices we make, even if flying happens on a wire, with ropes and carabiners, and with the help of friends getting us in and out of our gear.
I am curious to know reader, what choices are you grateful for?
