Don’t ignore pain!!!

Ever have the feeling your doctor isn’t taking your pain seriously?

A recent study by Dr. Reshma Jagsi from the University of Michigan, compared what patients said about the side effects they were experiencing from radiation treatment, with what their doctors reported.

What the study found

Approx 9,900 breast cancer patients participated, who had received radiation treatment after lumpectomy;

Patients and physicians were asked to complete a questionnaire after each treatment detailing symptoms they were experiencing. The study found:

  • About 30% of the patients reported moderate to severe pain, yet physicians reported that the patients had experienced pain at only 1 on the scale or no pain at all.
  • For patients who said they were experiencing itching of the breast often or all the time: the doctors, on about 36% of their responses, said their patients were experiencing no itching at all.
  • For patients who reported they were experiencing swelling of the breast often or all the time: the physicians, on 51% of their responses, said their patients were experiencing no swelling at all.
  • Although patients reported they were experiencing significant fatigue most of the time or always, about 19% of physicians said their patients were experiencing no fatigue at all.

In addition, the study found that this under-recognition of symptoms occurred more often in certain groups of patients, in particular, those who were:

  • younger (less than 50 years old) or
  • “Black or other race”

Discussion and reactions

Patients frequently reported very significant symptoms while their doctors said these same symptoms were nonexistent or very minor. Also demanding attention were the age- and race-based disparities in under-recognition of symptoms.

During Q & A  it was asked whether patients may be more comfortable reporting side effects on questionnaires, rather than “disappointing” their doctors with “complaints”.

Dr. Jagsi replied that she absolutely thinks that’s the case, saying “we need to encourage patients that, when we tell them certain side effects are expected, it doesn’t mean they shouldn’t tell us if they’re bothered by those side effects.” She stressed that doctors need to emphasize to patients that they want to know about any side effects that they’re experiencing and that there are things they can do to help support them through the experience.

Dr. Virginia Kaklamani, MD, Co-Director of the conference, said “we need to listen more to our patients.”  Or perhaps learn to understand what patients are trying to say?

Implications of the findings – you are not alone

DiFerrari says this is not the first study that has found major differences in reporting of cancer treatment side effects between patients and their doctors. For example, Dr. Jagsi cited in her presentation a study published in 2020 on radiation techniques for cervical and endometrial cancer that had found similar discrepancies.

Under-recognition of treatment side effects impacts patients in at least two major ways. The first, of course, is ensuring they receive quality care including appropriate management of symptoms and side effects while undergoing treatment.

Directly related to that, getting a clear picture of individuals’ experiences with side effects, which can differ across populations, is an important part of addressing cancer health care disparities.

Resources

There is no doubt that the best resource is a patient actually speaking up and making sure their doctor and medical team understand what they are saying.

Breastcancer.org. has Tips for Communicating With Your Doctor .  This includes suggestions and questions to ask when talking with your doctors and nurses about pain and other side effects.  This is written for American patients, who often have time for more direct communication with their treating physicians, but, wherever we live, it’s OUR  body – the only one we have – so we MUST speak up for ourselves.

What to do
Pain relief has improved dramatically in recent years – even months.  If you are experiencing pain, go back to your GP and ask for another referral – but this time do some research on the Internet, find out what consultants specialise in, and ask to see a named consultant.
Pain relief is getting more attention, and the Covid-19 crisis can work in our favour, as focus is being given to long-covid and the problems it is causing (including pain). 
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