#CSSMchat summary – “Living In Fog: The Cognitive Changes After Cancer And Cancer Treatment.” 27th January 2021.

Author: Farah Qasier

We were excited to kick off 2021 with a Cancer Survivor Social Media chat about living in ‘fog’ — often used to describe the experience of cognitive changes which take place after cancer and cancer treatment. 

As many followers of Cancer Survivor Social Media will know, people with cancer often describe having chemo brain: a mental cloudiness or cognitive changes that take place before, during and after cancer treatment. Over a third of cancer survivors can show cognitive changes in the months to years after treatment completion. As described by the American Cancer Society, this can involve memory lapses, spacing out, taking longer to finish tasks and having trouble with learning new things.

On Wednesday 27 January 2021, our #CSSMchat about living in fog was facilitated by four individuals:

  • Megan-Claire Chase (a breast cancer survivor and patient advocate);
  • Dr. Samantha Mayo (an Assistant Professor at the University of Toronto’s Lawrence S. Bloomberg Faculty of Nursing, whose research focuses on improving the long-term health outcomes of cancer survivors); 
  • Dr. Diane Von Ah (a Professor at the Indiana University School of Nursing, whose research focuses on advancing the science in the area of cancer survivorship);  
  • Dr. Maryam Lustberg (an Associate Professor at The Ohio State University, who is a medical oncologist specializing in treating breast cancer).

Our four facilitators began the #CSSMchat by asking: “What are some of the daily challenges you experience with cancer-related cognitive difficulties?”

Some of the responses included:

“T1Q1: I’m not sure how much it affects my day to day now, but back when I was getting chemo it was difficult to keep up with my schoolwork, even with one on one instruction. We ended up having to remove me from an advanced math class that I should’ve been able to take because I couldn’t keep up with the schoolwork involved. #CSSMchat”

— Cheyenne Heflin (@resilient_aka)

“A1. How many patients literally cannot think of the name of what they want to say mid-sentence? It’s like my brain becomes a void. #CSSMchat”

— Megan-Claire Chase (@warriormegsie)

“My son was in treatment at 2 yr old. The chemo-induced ADHD is severe. Chemo before the maturation of the prefrontal cortex presents severe challenges to executive functions. Organization is a challenge. Concentration. Initiation. He is grateful for the hyperfocus when it occurs”

“This is part of my son’s prefrontal cortex. He must have about 25 of these books now. Each book represents some area of his life. At the beginning of the day he pulls out the books he needs. Its so sad, and makes me so proud, all at once. Determination instead of exasperation.”

— Mary Beth Collins (@marb1111)

One chat participant flagged the impact of fatigue on chemo brain: 

“One issue not often addressed is the impact of fatigue on #ChemoBrain. Before chemo, cognitive abilities decline gradually with fatigue. Post chemo, with fatigue, cognitive abilities drop off a cliff. #CSSMchat”

— Susan Mazrui (@SPMazrui)

Facilitator Dr. Diane Von Ah noted that “other symptoms such as fatigue, depression, anxiety, sleep disturbances can impact cognitive ability”, and flagged the importance of working with your healthcare provider to address all symptoms. Facilitator Megan-Claire Chase echoed this concern, stating that “I often think even the name #chemobrain or #chemofog is too benign a term for how debilitating it can be.” 

There is still no gold-standard tool to screen for chemo brain symptoms as health-care providers are still learning about how to assess these symptoms in their practice. Here, initiating a dialogue with cancer survivors can be a starting point, followed by suggesting further investigations or consultations with specialists. A care plan may involve a combination of symptom management, ongoing monitoring, and exploring different helpful strategies.

In the #CSSMchat, our four facilitators asked cancer survivors: what can healthcare providers do to better address your concerns about cognitive changes?

Suggestions included:

“Recognizing that cognitive changes before, after and during treatment are real is very important. Sometimes the care team is more focussed on visible side effects of treatment like nausea or digestive issues than less visible side effects like brain fog. #CCSMchat”

— Ann Marie Hume (@AM_Hume)

“Recognition from healthcare professionals that it is a genuine long term effect. I went to my doctor 11 years after I finished tx & 1 Yr post after discharge but just said nothing can be done. Would love to see baseline neuro tests before tx starts so can be assessed post tx”

— Nicola Lewis (@nichlewis)

“I think medical professionals need to recognize the impact of #ChemoBrain in work and in school. Begin talking about lifestyle changes that may help. Focus on rehab not just monitoring decline.”

— Susan Mazrui (@SPMazrui)

Facilitator Megan-Claire Chase flagged a number of important concerns, including a desire to see a standard process when discussing cancer survivorship plans, noting that “I’ve never been told what type of specialist to seek out to help improve my #cognitive thinking due to #chemobrain.” Chase also wondered whether “our health care providers are worried they will scare us by listing possible long-term effects. I would rather be armed with a list of possibilities that I could reference.” Here, facilitator Dr. Samantha Mayo stated that this was a worry, but acknowledged that “it’s not about me and I think information should be shared and tailored to each patient and family. It’s an art and we all need more training in this.”

The #CSSMchat then shifted to discussing coping and supportive strategies for chemo brain. Here, adaptive organizational strategies, such as lists and note-taking, can help reduce episodes of forgetfulness. Studies have also shown that activities to stay mentally stimulated and stress-reduction activities, such as exercise and meditation, can help improve attention, concentration and memory. Our four facilitators then asked: what things do you do to manage the challenges related to cognitive difficulties? If nothing currently, is there anything you feel inspired to try?

Some of the responses included:

“I try to stay well rested. Important appointments, even lunch w/ a friend, goes on my phone’s calendar. I avoid multitasking and try to finish one project before taking on another so I can focus better. I’m good at spelling and grammar but I quadruple check everything now.”

— Deeply Missing Mardi Gras (@christylorio)

“I could never remember if I just took my medication or if I was just about to take my medication.  I decided to pair my med schedule with my dog’s meals and he is really good about reminding me!”

— Cheryl White (@LadyScorcher)

“T3 A: I make exercise and stress management a priority. Walking, yoga, meditation, gratitude journal, sleep… and nutrition. I also read to relax and unwind (although that impossible during treatment and for a while after). Make lots of lists. Do one thing at a time. #CSSMchat”

— Ann Marie Hume (@AM_Hume)

Finally, our facilitators shared resources and emerging research in this area. This included the National Cancer Institute’s page about cognitive problems in cancer survivors, an ongoing study to understand the risk factors of cognitive concerns in cancer survivors (participate here), and cancer support groups, such as Elephants and Tea, Lacuna Loft, and GRYT Health

The final #CSSMchat question was: what information have you found helpful for those experiencing cognitive difficulties?

Chat participants shared:

“T4 Q4: I took a Brain Fog course offered by @OttawaCancer . It offered lots of great tips and practices for us. And nice to share challenges and strategies with others. Highly recommend. #CSSMchat”

— Ann Marie Hume (@AM_Hume)

“T4. My issues have been going on so long I’ve found more comfort in speaking to others with the same issues rather than information (haven’t found much out there tbh). I have found as student therapeutic radiographer Im able to support others experiencing issues during treatment”

—  Nicola Lewis (@nichlewis)

During the chat, Dr. Victoria Forster, a cancer survivor and co-founder of the Cancer Survivor Social Media, asked a question which resonated with many participants: “my question is, because I was diagnosed at age 7. How do I know what normal as an adult is? How was it supposed to be compared to how it is!?” 

Cheyenne Heflin (@resilient_aka) echoed this, stating that “I was treated at 13, so I wonder—out of what I deal with now—what is normal and what might be a consequence. I wasn’t referred to a specialist because I said I felt “normal” and didn’t show any severe signs of problem.” Similarly, cancer survivor @Jiffs81 pointed out that “I find if you try to tell someone about your cognitive issues as related to cancer they usually turn around and just say its cause you’re getting older and they have problems too. There’s [really no] measure.”

Facilitator Dr. Diane Von Ah stated that “This can be difficult and frustrating-because we can only measure cognitive performance at a single moment in time. And measures are limited. Tests can be used to compare you to those without cancer history. But focus should be on maximizing current cognitive status.”

Following the chat, Dr. Diane Von Ah said that “these conversations with survivors truly validate the importance of my work in identifying factors that contribute to cognitive impairment, and working to find interventions or treatments that will alleviate this bothersome and debilitating symptom. It demonstrated the urgency and critical need to do more and that we have to do better in alleviating this issue for cancer survivors.”

For Dr. Samantha Mayo, the chat “further highlighted the diverse and persistent impacts that cognitive impairment can have on the daily lives of survivors. While I was inspired by the creative strategies that survivors adopted to manage cognitive impairment, the many challenges that survivors described in accessing supports continue to motivate my research efforts to enhance clinical services in this regard.” 

Dr. Maryam Lustberg noted that they were “Impressed with the resilience and creativity of participants with coping and managing cognitive symptoms in a number of different ways” and “could see how validating it was for them to interact with one another.” 

Finally, Megan-Claire Chase said that “this chat gave patients impacted by chemo brain/fog a voice to express their concerns, frustration, and fear while feeling truly heard. Most of all, discussing these shared experiences lets patients know they are not alone.”

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