A new, provocative study published in March in the journal Cancer sheds some light on the relationship between patients’ belief about their likely curability and the trade-offs they are prepared to make once a definitive diagnosis has been made.
The authors asked 500 patients aged 70-96 years, with incurable cancer–as judged by their oncologist–to rate their belief that their cancer “will go away and never come back with treatment.” A 5% minority reported that there was a 100% chance that their cancer would be cured, and nearly a quarter of patients estimated their chances of cure as 50% or greater.
Patients who held the most absolute beliefs about curability were the most willing to trade their quality-of-life for maximum survival, but in contrast, nearly three quarters of patients said that maintaining quality of life was more important to them than living longer.
Back in January 2017, my 13-years younger brother, Warren, was diagnosed with stage IV (metastatic) gastric cancer. Regrettably, he wasn’t symptomatic until it was too late, which is typical with gastric cancer. His oncologist (at a top-three cancer hospital) recommended a treatment protocol of chemotherapy, surgery, more chemo, and that approach would hopefully result in a cure.
After surviving the first round of 12 cycles of pernicious chemotherapy (decades-old oxaliplatin, together with fluorouracil and folinic acid), the follow-up CT scan suggested that Warren undergo what’s called cytoreductive surgery (CRS) with HIPEC. In English, this means Warren’s abdomen would be opened and the surgeon would remove all the cancer he could see, including his entire stomach. Then the abdomen would be rinsed with heated oxaliplatin before closing him up.
I did some research and learned that Warren’s specific type of gastric cancer is the most unfriendly, with a very poor prognosis, namely, a 2-year survival rate of about 4%. Warren’s tumor profile report from that sector’s leader, Caris Life Sciences, said the profile made Merck’s Keytruda (pembrolizumab) the chief treatment option.
But Warren’s oncologist said he believed the chemo/surgery/chemo approach had to fail first before he would even consider putting Warren on Keytruda. In other words, his oncologist and surgeon stood steadfastly by their recommendation for the removal of his entire stomach and other involved organs, followed by the rinse of his abdomen with the heated chemo. Warren wasn’t told that losing his stomach would be a life-altering event. And the HIPEC rinse might not only not work, but he might also have life-threatening complications as a result of it.
Despite the ugly prognosis, if maybe he was the one in a million patients–the true long-shot, ultra-rare exception–he figured he could get three, who knows, five years, where he could live a relatively “normal” life before succumbing. That would be an acceptable tradeoff for seeking a “cure,” with all the chemo, the surgery and HIPEC, and more post-op chemo. That was essentially what his doctors were leading him to believe.
Warren decided to get a second opinion from the chief oncologist of another fine hospital in the metropolitan region where he lived. Warren had heard “through the grapevine” that this oncologist was a believer in the curative promise of Keytruda and other checkpoint inhibitors like Bristol-Myers’ Opdivo. Maybe immunotherapy with Keytruda would knock back most or all of his cancer and he could keep his stomach.
Meetings like the 2018 ASCO event are replete with promise for those cancer patients undergoing new treatments that work. But as one wades through the data in the papers, it becomes clear that they don’t work as a cure for the vast majority of patients and, in some cases, actually kill a non-insubstantial percentage of them.
Beneath the quandary, though, in each instance whether to take the established medical treatment or just let nature take its course, is the quality-of-life issue. This seemingly should be addressed directly at worldwide meetings like ASCO. But I don’t see it mentioned, as though that’s not the purpose of the plethora of trials and papers wherein most stage IV patients die from the complications of their treatment than the medicines being tested. That seems wrong to me.
But back to Warren. Put simply, Warren got the second opinion and the oncologist said…he agreed completely with the surgery that had been recommended. And when Warren asked about Keytruda he was told, “The realm of science with Keytruda and gastric cancer is evolving.” He made it clear his recommendation was, “Don’t resort to still experimental immunotherapy (Keytruda) when you have another option,” namely the complete gastrectomy.
Warren underwent a cytology test to confirm that he was a candidate for the surgery. The hope was that the cancer was now confined to his stomach and that turned out the result. Although initially crushed that the second opinion confirmed the surgery option was his best bet, not immunotherapy, the conviction was rendered so strongly that Warren was at least relieved there was total consensus among his doctors. He realized that unless he eschewed his doctors’ radical plan, there wasn’t a path to a “good” outcome where he didn’t lose his entire stomach.
Warren passed away earlier this spring from complications of the chemotherapy, the surgery and recurrence of the stomach cancer. Rather than five years of survival, he got 17 months from the initial diagnosis. The six months of chemotherapy was pure hell. He developed severe neuropathy wherein he lost the feelings in his feet, then lower legs, both hands and then his arms. No one had told him such complications were likely permanent.
The chemotherapy was followed by the full gastrectomy whereby his entire stomach, gallbladder and spleen were removed. His recovery from the surgery went reasonably well, lasting about three months. Following the surgery he had difficulty with his new, highly-restricted diet where he ate up to six, small meals a day, hopefully enough to obtain the nutrition needed for him to regain some of the 25 pounds he had lost since the beginning of his treatment.
Twelve months after his initial diagnosis, Warren was feeling better and had put on some weight, having adjusted to his new digestive track where liquids and solid food passed directly from his esophagus into his small intestines. The chemo-induced neuropathy continued. A dedicated ultra-marathoner, he started running again on his beloved towpath adjacent to the Potomac River. He even entered a 10K, set for this October in Harpers Ferry. I told him I’d meet him there and do the run together. All in all, things were looking up.
But one Friday evening in April, he suddenly developed what he termed *real* pain in his back and abdomen. He wound up in the local emergency room where several liters of fluid were drawn from his abdomen. The culprit was “ascites,” an abnormal buildup of fluid in the abdomen, usually as a result of liver cirrhosis. Following the ascites, Warren’s condition cascaded downward. He was in constant pain and began a routine of frequent trips to the ER for more abdominal drainage, and other treatment.
In one of our last conversations Warren said, “Steve, if I knew back then (before undergoing the chemo/surgery treatment) what I know now, I’d have taken the palliative route and let nature take its course.” Yes, Warren did see his eldest son get married and his youngest son graduate from law school. But out of the 17 months from initial diagnosis until his passing, he had perhaps just three where he felt pretty good and was optimistic about the future.
The final 10 weeks were, frankly, exceedingly cruel, but you wouldn’t know it from his demeanor. In one of our last conversations, Warren mentioned that he was finishing work restoring an MG Midget, a surprise gift he was going to give his teenage granddaughter. He had finally put in the “new” transmission, and the project was complete. Strangely matter of fact, he said, “Steve, I finished my last project…I’m going to give [her] the keys to the MG, and then I’m going to check out.” At that moment I knew exactly what he was saying.
Two days later, Warren entered a private hospice where he died peacefully with his immediate family by his side.
The authors of the study mentioned at the outset of this piece note that the broad term “quality-of-life” is interpreted or imagined in different ways by different people depending on their values, beliefs and world view. Therefore, when cancer surgeons and oncologists mention quality of life, they should be aware of the abstract nature of this concept for many people. A more fruitful discussion, however, may be to describe the specific consequences of treatment that people can easily envision, such as vomiting, being bed-bound, worsening memory or prolonged hospitalization.
Ranjana Srivastava, an Australian oncologist and author, points out that many patients either don’t think to ask about such things or figure someone will mention it, but all too often, in the rush to treat the cancer, these vital facts can be omitted. “Far from fear-mongering, a thorough discussion about what it means to have impaired quality of life is vital for patients to make a fully informed choice,” she concludes. She’s absolutely right.
Warren’s simple, honest, remark to me about, “Had I known back then, what I know now…,” rings in my head and heart nearly every day. He taught me that if quality-of-life isn’t mentioned up front in a life-threatening health scenario, it’s incumbent upon the patient to demand it. Far too often, this simply doesn’t occur. Oddly, this seems more the norm today, especially in the top hospitals. Someday–soon, hopefully–a comprehensive study will answer the question of “Why.”
Perhaps this piece will help serve that purpose. Thanks, Bro.
–Steph Walker, Editor