Communicating Symptoms and Treatment Side Effects With Your Healthcare Team

May 9, 2019 Published by
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This post is sponsored by Med-IQ but all opinions are my own. Med-IQ is an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists and other healthcare professionals.

As you know, darlings, I was once diagnosed with two different types of cancer in one day.

It was the most challenging thing I’ve experienced as an adult. As I’ve looked back on the past decade as a cancer survivor, I want to share some wisdom I’ve absorbed from my experience.

I wish someone would have told me as I journeyed through cancer treatment how to best communicate my symptoms and side effects to my care team.

While this sounds like a simple enough idea, the truth is: it’s difficult! It’s difficult because we’re all humans interpreting information from the filter of our own experiences. A pain level of 7 may be very tolerable for me and not worth noting, but my care team may assess that a 7 pain level is unacceptable.

It’s important to remember that when you’re in the center of treatment, you’re not always your most present. You might be sleep-deprived, uncomfortable and not able to articulately relay what is happening with you and what you need.  That’s why it’s important to communicate your symptoms and treatment side effects regularly with your healthcare team.

Why reporting side effects and symptoms is important

Reporting your symptoms and side effects is important because some side effects are minor, whereas others may indicate a more serious problem that needs medical attention. For example, if you’re suddenly feeling feverish or confused, that is a serious concern and should be communicated. As I mentioned earlier, you’ll be in an altered state (even just from the distress of the situation) and it’s important not to make any medical judgments yourself as to whether side effects and symptoms are or are not significant.

When getting cancer treatment, ask the care team about common side effects, how long they might last, how severe they could be and when to call for help.  In these moments, what you don’t know can hurt you. If your symptoms are becoming too disruptive or concerning, your healthcare provider may prescribe medications to help prevent or lessen certain side effects. Being organized and providing better control over the symptoms and side effects can help cancer treatment go more smoothly.

Strategies for tracking symptoms/side effects

The American Cancer Society has a great set of tools for keeping track of symptoms and side effects.

  1. The Side Effects Worksheet
    The worksheet allows you to note the side effects of everything: surgery, chemotherapy or radiation. You can include when each is occurring and using a scale of 1-5, how severe they are. This is important. It should be done daily, not left to the end of the week.
  2. Pain Diary
    The Pain Diary includes a scale for rating pain and notes of where you feel it, what it feels like and what makes it better or worse.
  3. Medicine Chart
    This chart allows you to track not only meds but also vitamins and supplements. This is extra important, as supplements can interfere with treatments.

Be watchful of well-intended friends and family giving you medical advice. Although they mean well, they are not your doctors and nurses. Thank them for their concern and inform them you are sticking to what your oncology team advises you to do.

When to reach out to your care team

A key to recovery was my support team, led by my ultimate concierge, my husband Shelly. He was pivotal in making sure I made my appointments, followed my doctor’s directions and gave me a new bracelet every time. While none of my symptoms were very extreme, Shelly would have been the first one to demand that I go to an emergency room if it seemed like I needed medical attention. Some examples of serious side effects that require immediate care or an emergency room visit are:

  • A fever of 100.5°F or higher
  • Difficulty breathing
  • Increased pain
  • Trouble swallowing
  • Confusion
  • Uncontrollable diarrhea
  • Swelling in the legs or arms
  • Bleeding

Regardless of your stage of cancer diagnosis, I want to leave you with one key thought: hope! There is so much hope to be had and I have so much for you and yours. Yet, while we look ahead to the hope of a healthy tomorrow, dealing with cancer treatment symptoms and side effects calls for a commitment to your care team, your wellness and your family. If you need more information about the topics I’ve mentioned in this post, here are a few helpful resources.

Resources for further reading

American Cancer Society – Chemotherapy Side Effects

Cancer.Net – When to Call the Doctor During Cancer Treatment

Cancercare – Talking to Your Health Care Team About Treatment Side Effects

Links to external sites are provided as a convenience and for informational purposes only. They are not intended and should not be construed as legal or medical advice; nor are they endorsements of any organization. Med-IQ bears no responsibility for the accuracy, legality, or content of any external site. Contact the external site for answers to questions regarding its content.

I was compensated by Med-IQ through educational grants from AbbVie, Astellas, and Genentech to write about communicating symptoms and treatment side effects with the healthcare team. All opinions are my own.

Med-IQ is conducting a survey and would appreciate your input. The survey, which includes additional education on this topic, will take less than 15 minutes to complete. Survey responses are anonymous and will be shared only in aggregate.

Your responses to these survey questions will provide Med-IQ with important information about your experiences with cancer symptoms, treatment-related side effects, and your care team, which will help us develop future educational initiatives for healthcare providers to improve care.

Once you’ve completed the survey, you will be asked to provide your email address if you’d like to be entered into a drawing administered by SOMA Strategies to win 1 of 5 $100 VISA gift cards. If you choose to enter, your email address will not be sold, kept, or stored; email addresses are used only to randomly draw the winners and notify them of their prize.

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