Olubukola Ayodele, Breast Cancer Lead at University Hospitals of Leicester NHS Trust, shared on LinkedIn:
“So, I’m sitting in front of the TV, munching on caramel popcorn enjoying the taste and suddenly, I went down memory lane of how few weeks ago, I couldn’t taste anything.
This wasn’t just a dulling; everything was gone. I had been placed on strong antibiotics due to some complications post op, and overnight, one of my greatest joys disappeared. If you are close to me, you’ll know that I’m a foodie; I even review restaurants. If medicine hadn’t claimed me, I would probably be running a restaurant as a chef. But suddenly, food became pointless. Eating turned into a chore. In just two weeks, I lost 7 kg, not by choice, but because there was no joy in eating.
No one had warned me that this might happen. While I wouldn’t have refused the treatment, perhaps I could have been better prepared for the consequences.
That’s when it struck me: I gained a tiny glimpse into what my patients with metastatic breast cancer face every day.
Unlike me, their treatments often continue for life, and the side effects are not just abstract concepts; they shape their daily existence.
Yet in oncology, we often describe toxicities as “well tolerated” or “manageable.” But tolerable for whom?
- Loss of taste for a chef isn’t “mild.” It’s devastating.
- Peripheral neuropathy for an artisan isn’t a “side effect.” It’s losing their craft, their livelihood.
- Grade 2 diarrhea might look “manageable” on paper, but on the day of your daughter’s recital or an important client meeting, it’s anything but.
One of my mentors, Prof. Ian Tannock, once told me: “When treating metastatic disease, only two things matter; helping people live longer, or improving their quality of life. Ideally both.”
The truth is, patients often prioritize quality of life, while oncologists prioritize survival. However, survival at the cost of misery is not the gift we imagine it to be.
I once had a patient who feared hair loss above all else. I knew of a drug with better efficacy, but it guaranteed alopecia. We sat together, weighed the options, and she chose to keep her hair even if it meant fewer months of life. Because that was what mattered to her.
That experience, along with many similar conversations I’ve had with my patients in clinic and my own short-lived “taste blindness,” has reinforced something I believe deeply: shared decision-making isn’t just a box to tick; it’s the heart of compassionate cancer care.
As clinicians, we must never forget that behind every toxicity grade is a person. Their priorities may differ from ours, and that’s okay. Our job is to listen, inform, and work together with them so that their treatment reflects their values, not just our medical judgment.
Because living longer is only meaningful if life itself still feels worth living.
I’m curious: what “manageable” side effects do you think we often underestimate?”