IKCS 2022: The Patient Perspective on Side-effects and Care

(UroToday.com) The 2022 IKCS North American annual meeting featured a session on side-effect management and quality of life perspectives in kidney cancer treatment, including a presentation by Laura Esfeller discussing the patient perspective on side-effects and care. Ms. Esfeller started by highlighting her own patient journey. In May 2016, she was diagnosed with stage IV papillary renal cell carcinoma at 29 years of age, related to hereditary leiomyomatosis and renal cell cancer (HLRCC). After a radical nephrectomy, adrenalectomy, and IVC resection it was discovered that she had continued metastasis to the liver and lungs, as well as throughout the mediastinum and chest. She was subsequently enrolled in the PAPMET/SWOG S1500 trial by her medical oncologist Dr. Nick Vogelzang in September 2016 and assigned to cabozantinib. Her first scan in December 2016 showed an 80% reduction in tumor burden and she was declared NED in August 2017. Cabozantinib was discontinued in April 2020 and she is still NED as of July 2022 and now on a 6-month surveillance scan regimen.

Ms. Esfeller importantly highlighted the side effects that she experienced while on cabozantinib, including:

Hypertension
Hypothyroidism
Nausea
Vomiting
Diarrhea
DVT
Edema
Hair color lightening
Skin pigment changes (lightening)
Mouth sores
Changes in taste
Hand-foot syndrome
Fatigue
Irregular menstrual cycles
Bleeding gums

Ms. Esfeller notes that today’s cancer patient is not the same as yesterday’s cancer patient given that targeted therapy and immunotherapy are yielding different patient responses in many cases than chemotherapy and radiation. Additionally, patients may not always “look” like a cancer patient, requiring education for not only themselves, but also for caregivers. It is important to be honest with patients on the severity they may experience with side effects. “Fatigue”, “diarrhea”, and “mouth sores” don’t always adequately prepare the patient for what to expect. It is much better to be honest and transparent than to cause unnecessary concern and panic when side effects occur (usually after hours). For patients on targeted therapy and/or immunotherapy, provide them with easily transportable information on their treatments in case they need treatment from other providers, especially in emergency settings.

Ms. Esfeller highlights that it is important to involve palliative care early on and to determine what is most important to patients when dealing with side effects from treatment. How risk tolerant or averse are they? Additionally, it is important to discover barriers to successful treatment and help patients develop a game plan on how to address (i) if home health is needed, (ii) if work accommodations are needed, and/or (iii) if they need supportive services from social workers or therapists. Patients should be encouraged to have a caregiver present at all appointments, and if it is not possible due to COVID or other factors, they should be encouraged to record appointments and to refer back to the recordings later (which is less stressful and more comprehensive than writing notes). It is crucial to create an environment of trust with the patient. The oncologist, the staff, the patient, and the caregiver(s) are on the same team, fighting the same enemy. The more the patient trusts their doctor, the more open they will be with their side effects and other quality of life outcomes.

Laura Esfeller concluded her presentation discussing the patient perspective on side-effects and care with the following take home messages:

A patient who feels well equipped and knowledgeable about their care is worth their weight in gold
How you approach these sensitive conversations can be positively or negatively life-changing for them
Make it positive!

Presented by: Laura Esfeller, Strategic Communications SWOG Kidney Cancer Patient Advocate

Written by: Zachary Klaassen, MD, MSc – Urologic Oncologist, Assistant Professor of Urology, Georgia Cancer Center, Augusta University/Medical College of Georgia, @zklaassen_md on Twitter during the 2022 International Kidney Cancer Symposium (IKCS) North America, November 4-5, Austin, Texas, USA

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