The new face of cancer survival is younger, with a challenging road ahead : NPR

Four years ago, Lourdes Monje was 25, had quit an uninspiring job in New York, and was crashing at a sister’s apartment in Philadelphia while plotting a career shift to teaching.

“Instead, I found cancer in my body,” Monje says.

On Halloween morning of 2020, Monje felt a strange bump on their left breast. An agonizing series of scans and biopsies revealed cancer that had spread to spots on the lung. That devastating diagnosis narrowed Monje’s vision of any future to a small, dark point.

But at the next appointment, Monje’s oncologist explained that even an advanced diagnosis is not a death sentence, thanks to revolutionary changes in cancer care. Technology, using tools like artificial intelligence, is better at identifying cancers, earlier. AI can help radiologists read mammograms, and the chemical profile of cancer cells can be determined so targeted therapies can succeed.

A generation ago, the typical cancer patient cut a very different profile than Monje: Older, with an empty nest, living at or near retirement, and thus more financially secure. In older age, the average patient also had peers aging into illness alongside them — and few survived very long. So Monje represents, in many ways, the new generation of cancer survivor — a person who is younger, less financially secure, and still having to navigate life after treatment, from dating to career, sex and child rearing.

Life, recalibrated

Monje has a cancer subtype known as ER+/Her2- (estrogen-receptor positive, Her2-protein negative) that is among the most common forms of breast cancer, and there are therapies effective at fighting it. New drugs and immunotherapies target and destroy cancer cells while leaving healthy cells intact. Those advances can keep even metastatic disease at bay for years, the doctor told Monje. “She even told me to try to ignore the fact that it was Stage 4, which is a little hard to ignore,” Monje says.

But undergoing those treatments also thrust Monje into turmoil — physically, hormonally, career-wise and, obviously, emotionally. “Life — for me — it felt infinite, and I think that’s something that a lot of us have when we’re young, is that life feels like it’s going to go on for a long time,” Monje says. “I spent a lot of time mourning that. I spent a lot of time mourning that I don’t have this carefreeness about life anymore. That, I think, has been one of the harder emotional changes.”

People in their 20s, 30s and 40s have been overlooked when it comes to both cancer research and support, says Alison Silberman, CEO of Stupid Cancer, a group for people affected by young-adult cancer. Because they have so much life to live, their needs are greater and more complex, she says.

“When we think about all the things that are happening in your life at that time, you’re graduating from high school, going to college or starting a career or starting a family – having a cancer diagnosis has such a significant impact,” Silberman says. And, she says, those impacts can be long, and are almost always painfully socially isolating.

Silberman herself lost a beloved 24-year-old younger brother who’d followed her to college in Maine, and then to New York City afterward. He died following a grueling 18-month bout with Ewing’s Sarcoma, a form of bone cancer, and the punishing treatments. “It kind of put a halt to my life,” says Silberman of caretaking and mourning him, which prompted her to pursue patient advocacy.

The flip side of great news

Cancer survivorship today in many ways is revealing the myriad struggles on the flip side of the great news that cancer is increasingly a treatable disease. Like Silberman, many experts worry too little attention is also paid to the quality of life people are left to live when they’re no longer actively undergoing medical treatment. She says often their educational, financial, or social concerns go ignored or undiscussed, leaving them unprepared.

“A lot of these survivorship questions are being asked too late, and they’ve lost years where they could have prepared for it,” she says. Things like whether to preserve fertility, how to maintain social and educational connections, or how to budget for out-of-pocket costs of aftercare and manage disruptions in career and income. “Those conversations need to happen earlier and they need to happen more often.”

Those kinds of life questions are still sorting themselves out for Lourdes Monje, whose cancer’s been contained, four years on. Like: When — and how — to get back into dating. Only recently, after many years of recovery and deliberation, has Monje felt ready to “dip a toe in the water.”

“I think for a long time I felt like I just wasn’t worthy of that,” Monje says. “I kept feeling like I was just going to be traumatizing someone, so I kept on feeling like: Why do that? Why push that burden onto someone else?”

Monje says being nonbinary made the infertility from treatment a bit easier to accept; unconventional families felt familiar to them. But that hasn’t resolved the existential question Monje says is a source of internal debate: “Would I want to form a family with a child, you know, knowing that they might have to see me die young?”

“So much happier with my life”

Monje’s new teaching career has also taken longer to launch, in large part because the maintenance treatments they receive cause bouts of fatigue or other side effects brought on by abrupt hormonal changes.

But Monje recently started working part-time, teaching computer skills to immigrants, reminiscent of classes Monje’s own parents took when they first immigrated with 8-year-old Monje from Peru two decades ago. “My parents benefited from programs like the ones that I work in now. So it feels like really valuable work that feels very much worthy of my time,” Monje says.

There are ways in which cancer focuses a spotlight on the things that make life precious, like family dinners and playtime with nieces. “It makes me savor those good little moments, so much more,” Monje says. “It makes me feel so much happier with my life than I was before. On ‘paper’ I have less than I used to, but the value of my life feels so much more.”