Who has the worst cancer?

Does it matter?

Does anyone remember the (widely panned) Kevin Costner movie Robinhood: Prince of Thieves? Why I became obsessed with this particular film in my teenage years, I will never know. It probably had something to do with the theme of fighting for the little guy.

In one moving scene, Costner as Robinhood gathers the band of men who have assembled to fight against the increasingly oppressive actions taken by the tyrannical Sherriff of Nottingham. After suffering a series of defeats, the bandits are tired and dejected. There are rumors of mutiny, and they consider abandoning Robinhood, returning home and accepting the Sherriff’s violence. Costner delivers a rousing call to action.

Morgan Freeman was in this movie! And Christian Slater. It was not that bad!

Costner says, “If you truly believe in your hearts that you are free, then I say we can win.” He then pleads for the men to stop their internal fighting. “If you wish to end this, if you wish to go home, then we must stop fighting amongst ourselves, and face that the price for it may be dear.”

Last week I gave a keynote address at the American Cancer Society’s Lung Cancer Round Table in Atlanta. This annual event brings together leaders, researchers, activists, survivors, industry representatives and healthcare professionals to discuss challenges facing the lung cancer community. Committees update the group on their progress and together they develop goals for the next year.

The organizers asked me to present the system I developed to provide comprehensive, patient centered survivorship care. Although my clinic served patients with a broad range of cancers, early-stage lung cancer survivors were one of our largest groups. In 2023, my group published a paper which detailed our process and results from the first 300 lung cancer patients. I am proud to say that I am truly one of the few physicians with expertise in lung cancer survivorship program development which is why the ACSLCRT organizers asked me to speak

During one of the planning calls, a committee member urged me to push the audience out of their comfort zone, to present something controversial that would generate conversation. I took her directive to heart.

My presentation included a slide with breast cancer on it which as anyone who works in this area knows could have led me to being chased out of the room by an angry mob. I used the slide to illustrate a concept that I suspected many in the audience would chafe at: that there are lessons to be learned from survivors of other “better” or more curable cancers.

My argument was that when we began screening for these other cancers 50 years ago, no system was developed to care for the survivors that early detection was intended to produce. The result is a system that fails to equip patients with information on, for example, how to decrease their risk of cancer recurrence and step wise approaches to address common side effects from medications which may help keep their cancer in check, but many patients stop due to toxicities. As such, despite rising cure rates and successful screening programs, many patients with breast, colon and cervical cancer feel unprepared for the challenges of survivorship.

Source: NIH Cancer Trends Progress Report.

Right now, the estimated number or eligible patients who undergo an annual low-dose lung cancer screening CT is less than 10%. I proposed to the crowd that while they develop programs to improve screening rates (which many sessions at the conference covered), they should simultaneously plan for how the newly diagnosed will be cared for. This, for example, would include increasing operating slots for thoracic surgery, training more interventional radiologists and investing in thoracic oncology navigators. It would also include setting up survivorship programs to maximize health after diagnosis, through treatment, and into survivorship.

There were some rumbles in the audience after that slide, however, my most controversial statements came later. Towards the end of my 20-minute talk, I presented our data that showed that despite undergoing different cancer treatments, early-stage lung cancer survivors had similar concerns. This interesting finding suggested patients treated with surgery and patients treated with radiation could be combined into one survivorship clinic. I also suspected that we could combine patients with different cancers into clinics, but I didn’t have that data to make a definitive conclusion.

My data suggested that the arbitrary nature of how we split up patients with cancer (based on body site and treatment modality) is antiquated and need of fresh examination. I believe patients in the future will be separated based on the genetic profile of their cancer rather than organ of origin. We are already seeing hints of this in patient taking immunotherapy.

Keytruda (pembrolizumab), for example, has FDA approvals for more than 40 tumor types, including melanoma, lung, bladder, head & neck, colorectal, gastric, cervical, liver, breast, kidney, endometrial, and certain blood cancers like Hodgkin lymphoma. In addition, other patients whose tumors express certain genetic markers are eligible to receive the drug. Patients with what we previously thought were incurable cancers of many disease sites are being put into remission with this remarkable therapy.

Source: AACR

Long term immunotherapy comes at a cost, however. The immune system not only attacks the cancer but often attacks the body. The result is many difficult to manage “-itis’s” including inflammation of the lungs, heart, liver, kidneys and adrenal glands to name a few. These reactions are relatively disease-site agnostic so ideally patients on immunotherapy could be placed in a follow up clinic together. There, cardio-oncologists, onco-dermatologists, nephrologists, pulmonologists and others could manage their symptoms and study ways to mediate or prevent these complications. Why not bring those experts together to address these shared concerns while a primary oncologist is still available in case cancer care needs to change? What would be the harm? And, more importantly, what would be the benefit?

At a breakout session later in the day, I received strong push back to my suggestion that survivors could be lumped together. Researchers and patient advocates passionately conveyed their feelings that stigmatization is experienced most by people diagnosed with lung cancer. “No one asks the breast cancer patient if she smoked,” said one survivor, “And yet, I get asked it all the time. And the answer is No. I didn’t, not that it matters.”

Another audience member emphasized that no other disease group faces the same amount of clinical nihilism regarding their prognosis as lung cancer patients.

I gently countered that nihilism is common in many cancers. Aggressive brain tumors like glioblastoma, for example, are about a tenth as prevalent as lung cancer, but most patients are not expected to survive for more than a year. This fact is repeatedly and pointedly conveyed to patients from diagnosis on. As Adam Marc poignantly shared in a recent post on his excellent Substack Glioblastology:

“You do know you’re going to die from this, don’t you?”

I turned to Whitney, squeezed her hand, and turned back toward the physician, rotating at the torso in my chair, opening my shoulders and chest to the doctor. “Yes,” I replied. I did know that I was going to die from this…

“Good,” he continued, “because I want you to know that what we’re doing here isn’t curing anything.”

I also shared with the audience my experience treating patients with HPV+ head and neck and cervical cancer. The shame associated with these technically STD related tumors can be profound. I remember one uncomfortable consultation when I met a retired Southern Baptist preacher with newly diagnosed HPV+ tonsil cancer. His wife had died a few years prior and he had recently married the church organist.

The patient, his new wife, and his adult children crowded in the exam room as explained his excellent prognosis. As I laid out my treatment recommendations, the realization of what “human papilloma virus” meant dawned on the minister’s son.

“Wait,” he interrupted me, “Are you telling me that this WOMAN gave my dad an STD? And now he has CANCER?” The prim, grey haired lady sitting next to his father blushed and lowered her head. I stammered that most of us are exposed to HPV in our teens and it was NOT a sign of sexual promiscuity. The tension in the room escalated and everyone started yelling at each other. I stepped out to call a social worker. If that organist could have disappeared into her sensible tan purse, I think she would have.

Right now, as we develop different screening paradigms, including in lung cancer, we have an opportunity to build a different system. We can learn from the experience of others (including breast cancer!) and in areas where body-site based survivorship has never been the standard. In pediatric cancers, for example, there is rarely a leukemia service versus neuroblastoma survivorship clinic due to the rarity of childhood cancer. This extends into the AYA space where organizations like First Descent and Elephants and Tea welcome any patient under 40 who has been diagnosed with any type of cancer. Site-neutral survivorship is not new in concept, just new in practice.

Everyone who has heard the words “You have cancer” enters a new reality and deserves resources tailored to their needs. We can also acknowledge that suffering related to a cancer diagnosis is not and does not have to be comparable. Someone diagnosed with an early-stage cancer can experience suffering just as much or more as someone diagnosed with incurable disease.

I’m not sure it’s productive to cordon survivors off away from each other as we consider allocation of limited healthcare resources. Instead, what if we provided ALL survivors with what they need to live the best life possible. Creating this future will require survivors to work together which is a project I’d love to be a part of.

As Robinhood told his men, “If you wish to end this, if you wish to go home, then we must stop fighting amongst ourselves, and face that the price for it may be dear.”

One my mind…

Dr. Pat Burney was a talented surgeon, fierce patient advocate and beloved member of our medical community. He died last month, and his service is today. I shared my memories on the page announcing his death:

I was privileged to share many patients with Dr. Burney. There was nothing like the thrill of answering a page to hear his gravelly voice on the other end of the line “Stace, it’s Pat. I’ve got a patient for you.” He was always teaching - pointing out interesting anatomy in the operating room when I stopped by to deliver radioactive mesh. Recovering from a broken arm, he took great interest in a trip that I was planning out West. We had a wonderful vacation thanks to his recommendations! What I will most remember, however, was how Pat embraced new treatments for patients with cancer. When he could have rested on his considerable talent and experience, his mind remained open. Thank you to his family for sharing him with us for all those years. It was an honor to be his colleague.