Three Simple Things to Improve Cancer Care

Nick Mulcahy

January 15, 2020

After practicing for years in Suffolk, United Kingdom, Liz Ball, MD, was a credentialed, skilled, and very knowledgeable oncologic surgeon.

"I thought I knew everything one should know about breast cancer. I was a consultant breast cancer surgeon. I even had a postgraduate degree in oncoplastic breast surgery," she writes in an essay published last month in the online journal ecancer.

She adds: "I was wrong."

More education was on the way for the British surgeon. In 2015, at age 40, Ball, who is more widely known by her married and social media name Liz O'Riordan, was diagnosed with stage 3 breast cancer.

New lessons came fast and hard. With her essay, O'Riordan has now summed up that continuing medical education for her peers, offering "three simple things that anyone can do to improve cancer care."

O'Riordan clarifies that oncology is "very good at offering clinically effective and safe treatments" — but is often deficient in a singular way.

"The one area where many providers fall short…is the patient experience," she writes.

Mark Lewis, MD, a medical oncologist at Intermountain Healthcare in Murray, Utah, has read O'Riordan's essay and summarized its uniqueness: "She probes the gulf between what doctors are taught and what patients need to know."

"In this powerful article, she invites us into the bicameral mind of the patient-physician," Lewis told Medscape Medical News via email. Lewis is also living with cancer and is on medical leave.

Full of compassion for both patient and physician, the essay is affecting and memorable, testified dozens of essay readers on Twitter, including Kathryn Mannix, MD, a palliative care specialist in Newcastle, United Kingdom, and author of With the End in Mind : Dying, Death, & Wisdom in an Age of Denial (HarperCollins).

"I may be crying on a train but it was worth it," she (@drkathrynmannix) tweeted about the article. "Every healthcare practitioner should read it and ponder. What do we REALLY know about the experience of the patients we hope we are helping well?"

https://twitter.com/drkathrynmannix/status/1205114352296181760

 

O'Riordan's reaction to the essay's reception? "I've been gobsmacked by the response it had," she told Medscape Medical News

Simple Thing #1

O'Riordan starts her essay exploring the deep angst she felt as a young doctor breaking bad news to patients. "Nothing prepares you for the first time," she says. "It's hard."

Fast forward to later years: angst has been replaced by efficiency.

"Over half of my time as a breast surgeon was spent in the clinic, and most days, I would end up telling many women that they had breast cancer. It often felt like I would break a woman, pick up the pieces, pass her on to the breast care nurse and repeat. It became routine…" she writes.

Speaking as an old hand, O'Riordan summarizes her skill: "I thought I was good at telling people they had cancer."

She now knows she was mostly mistaken: "…until you have been on the other side of the table, you have absolutely no idea what impact your words have."

O'Riordan sees a common blunder of hers: "I used to tell women with small cancers that they were 'lucky' we caught it early. No one is lucky to have cancer."

She recalls the moment when she had just learned she had cancer.

"Like most patients all over the world, I had to do the 'walk of shame' past everyone else waiting to be seen, down long hospital corridors, desperately swallowing to stop myself from screaming and shouting and swearing," she reveals.

This brings O'Riordan to Simple Thing #1: "Signpost" patients to safe, accurate, and friendly information.

"Recommend useful books, websites, forums and apps that they can browse with their loved ones and get the support they don't yet know they need when they walk out of the hospital," she writes.

If this sounds onerous, it's not, O'Riordan says.

"Ask your current patients to give you a list of the sites they found helpful. Trust me, we've already done the hard work for you," she explains.

O'Riordan emphasizes the difference between having knowledge about cancer and having experience of cancer.

She needed radiotherapy (a process she had never even seen despite referring many patients), followed by tamoxifen tablets.

"I used to gloss over the menopausal side effects, saying that 'most women find they settle within 6 months or so.' Who was I kidding? The menopause was horrific — it happened overnight," O'Riordan reveals. She turned to a website for young mothers with cancer, and other patients for help.

Simple Thing #2

"Second, make sure that every patient knows what the symptoms and signs of recurrence are, and what to do when they are worried," writes O'Riordan. Again, this involves providing patients with information — once the initial treatment has ended. It also should be reviewed at every follow-up. "So many patients don't realize that cancer can come back years later," writes O'Riordan.

"Patients have to deal with the daily worry of recurrence," she says, adding that information can help.  Further, she believes in introducing patients to the concept of "scanxiety" — mental anguish that commonly occurs while waiting for follow-up imaging results.

Simple Thing #3

There's more to life after treatment than yearly scans, says O'Riordan, as a person living with cancer. But as a cancer surgeon, she acknowledged that she "never really thought about [patients'] returning to work, exercising to reduce the risk of a recurrence, or sex."

That's Simple Thing #3: empower patients to start living again — by addressing these issues.

"Thanks to the menopausal side effects of the drugs patients take for up to 10 years, the loss of libido, vaginal dryness, and painful sex that can wreck relationships and ruin lives. Especially if you are young and single," O'Riordan writes.

Her former self "never talked about sex after breast cancer with my patients," she admits. "I didn't think it was my job to." She now believes it is a physician's responsibility, if possible.

Anxiety, depression and posttraumatic stress disorder (PSTD) can occur months or even years later "when the reality of what you've been through, what you look like, and what might happen in the future starts to sink in," O'Riordan also points out, advocating for awareness.

Make the extra effort — it's not exhausting, O'Riordan says. "It's actually really easy to improve cancer care, and often it's the little things that can make the biggest difference. You just have to ask the experts — the patients themselves."

O'Riordan and Lewis have disclosed no relevant financial relationships.

ecancer. Published online December 12, 2019. Full text

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