This is how the bottom drops out of your world in 10 seconds. It’s the sound of your doctor telling you, “I’m sorry.”
That is how Mary Elizabeth Williams, award-winning journalist and author, describes the moment her worst fears were confirmed.
On August 11, 2010, her doctor called and said: “We got your biopsies back, and I’m sorry to tell you this, but you have malignant melanoma.”
In the book she has written since then, A Series of Catastrophes and Miracles, she recalls some very dark thoughts.
”This morning, I had examined my shampoo bottle as I washed my hair and wondered if I would make it to the bottom of it…. I wonder if I will finish a canister of oatmeal, or if my bottle of Tabasco will outlast my presence in the world. These are the things I think about these days, because I have Stage 4 melanoma….”
The book outlines what happened next, the procedures she underwent and the challenges of having to deal with cancer when the world continues all around you.
It ends on an upbeat note: after joining a clinical trial for ipilimumab (Yervoy), her cancer disappeared within a few weeks.
Williams was an invited guest at this year’s ASCO Bookclub event, held during the recent American Society of Clinical Oncology (ASCO) 2021 annual meeting.
She was joined by Jedd D. Wolchok, MD, PhD, medical oncologist from Memorial Sloan Kettering Cancer Center, New York City, whom she credits as “the guy who eventually saved my life” after he invited her onto the clinical trial.
Leading the discussion about the book was Ann H. Partridge, MD, MPH, director of the Young and Strong Program for Young Women With Breast Cancer at the Dana–Farber Cancer Institute, Boston, Massachusetts.
The book highlights the importance of the patient–doctor relationship, she said.
Williams said that for her, “it played a role in everything.
”I really always try to impress upon people in the medical profession the importance of that respectful, collaborative relationship,” she continued.
”If Jedd had been a different person,” she in all likelihood would not have agreed to take part in the clinical trial. “It came down to feeling like I trust this person.”
Wolchok said that for him, it boils down to being “a good listener and a partner” to patients. The moment that he first realized this was during his third year at medical school, when one of his mentors said: “If you always treat your patients like a member of your family, you’ll never go wrong.”
”That’s the way that I try to approach this…to see this as another human being and an opportunity for me to reflect on what it’s like to be on the ‘other side’ of the examining table,” he commented. “What would I want if I were the one who were seeking medical care?”
Williams pointed out that she did not always receive such empathy on her cancer journey. She recounted an excruciating moment that occurred while she was being evaluated for the clinical trial.
She was to be examined by a doctor who was part of the team. When he came to see her, he brought a “bunch of people with him” and said: “Oh, this is the tumor I was telling you about.”
Although she can understand the detachment that doctors and nurses can have, and perhaps even the need to protect themselves from emotional burnout, this was someone who was “not even looking at me as a person.”
Even worse, she said, was the conversation that followed. Her melanoma was both painful and very visible on her back, and she had been told by a surgeon that it could be removed to make her more comfortable.
”Oh, no, no, no. You can’t do that if you want to be in this trial. We need that tumor,” the doctor told her.
Williams said she “was just so shocked and demoralized.
”Here I was, a person who was facing dying in a few months, leaving my children without a mother…and this person just didn’t see me as a human,” she said.
During the discussion, Partridge asked Wolchok to describe the progress that has been made in recent years in the treatment of melanoma and in immuno-oncology in particular. The huge change in prognosis for patients with melanoma, with survival lengthened from a year to more than 10 years for some patients, has been described as “truly amazing.”
Wolchok said that 10 years ago, clinicians talked about participating in clinical trials because the standard options were “not so acceptable,” but now, “we know how many people will benefit from this approach, and it’s at least half of the people that we treat in the first-line setting.
”We also know that there’s still the need for clinical trials, because we’re not curing 100% of people yet, and we’re going to stay at work until we do that, but the hope is so much more palpable.”
Asked what he would say to young oncologists who are working in areas where immunotherapy has reaped fewer benefits so far, such as pancreatic cancer, Wolchok replied: “Be persistent.”
The change in prognosis for patients with melanoma has occurred during the past 10 to 15 years. Before that, the prognosis for these patients was grim; the average survival was only 1 year.
Wolchok recalled being asked why he would “ever want to choose to specialize in a disease as depressing as melanoma.”
He saw it as a “challenge…. There was so much that we needed to do” to improve outcomes for patients.
Wolchok added: “I really believe that for those folks who are still dealing with very challenging, complex diseases, we can get there. I don’t know when, but it will be through the thoughtful integration of science into the medicine.”
Williams described scientific discovery as a “relay,” with each breakthrough being passed on to the next stage, and added that the same could be said for clinical care.
She explained that if someone doesn’t “communicate well, they weren’t compassionate, they weren’t respectful, they weren’t kind, they weren’t inclusive, they didn’t try hard enough,” the “baton” of care “gets dropped, and all that great science gets ignored.”
And for the patient, their care does not stop with the end of their treatment.
Williams described how her husband, Jeff, became stressed, anxious, and depressed, which he could not understand until she said, “They call it ‘posttraumatic stress’ for a reason.”
The impact of cancer lasts for “the whole rest of your life,” she continued.
”There’s managing your side effects. There’s managing your long-term chronic conditions. There’s managing you and your family and your employer and what everyone around you has gone through, and what that might look like long term.
”And I think that there is such a rush in our culture, both outside the medical sphere and certainly within the healthcare sphere, to go: ‘Okay, you’re great. Bye.’ “
It is therefore crucial that patients find support outside of the cancer center, she emphasized. “I can’t overstate what it means to be around other people who are going through what you’re going through, for my husband to be in a room where he can say, ‘My wife has stage IV cancer and it’s really hard for me,’ and for my kids to be around other kids whose moms and dads and brothers and sisters have cancer and to not feel like that’s weird or unusual or strange.”
She warned other patients that they should not turn to the internet if they want that kind of succor.
”Don’t google too much,” she said, “and look out for the online support groups, because you’re not going to find people who are doing well in them.”
Wolchok said that he and his colleagues are “very aware” of the pressures that a melanoma diagnosis can bring to a person and their family and friends.
”We encourage people to give up their feelings of taboo about seeing a mental health professional,” he said. “Why not take advantage of the fact that there are true mental health clinicians who know about ‘scanxiety,’ who know about what it’s like to be a long-term survivor of a disease where many people did not live a long time?”
Williams also urged patients not to fall into the trap of being a “hero” or “brave warrior.”
”Be vulnerable. It’s honestly the best thing you can be in the world.”
Partridge asked Williams what her message would be to encourage patients to participate in clinical trials.
She replied that, “first of all,” her message “would be to the people who run clinical trials to make them more expansive and easier to get access.”
Williams would also like to see changes in some of the parameters regarding access. She would like to see it become easier to participate in clinical trials remotely and that trials include people with comorbidities.
She said the pandemic has underlined that diseases such as cancer “don’t just affect people who are like me and basically otherwise healthy and fit and have access to great medical services.
”They affect people who are vulnerable. They affect people who have other kinds of sicknesses and who don’t have flexible schedules and easy access to healthcare facilities.”
Partridge has a relationship with UpToDate. Wolchok has disclosed no relevant financial relationships.
American Society of Clinical Oncology (ASCO) 2021: ASCO Book Club discussion on June 5, 2021.
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