#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.”

#CSSMchat summary – Dr Mandi Pratt-Chapman. 25th November 2020

Author: Farah Qasier

“Quality Cancer Survivorship Care & Survivor Experiences Amid COVID-19.”

It’s been a long and challenging year for many, and we are grateful to have had several excellent monthly chats hosted on Cancer Survivor Social Media. Our last of the year took place on November 25th 2020, hosted by Dr. Mandi Pratt-Chapman, who led a conversation about quality cancer survivorship care and survivor experiences amid COVID-19.

As any followers of Cancer Survivor Social Media will know, cancer and its treatment can have long-term effects, meaning that cancer survivors need access to quality follow-up care, as highlighted in this National Cancer Institute resource, and in this Cancer Survivorship E-Learning Series accessible via the GW Cancer Center’s Online Academy.

Pratt-Chapman is Associate Director of Patient Centered Initiatives & Health Equity for GW Cancer Center, and carries out research to build the capacity of the workforce to advance patient-centered care and health equity in oncology. To help improve patient-centered cancer survivorship care, the GW Cancer Center created the Advancing Patient-Centered Cancer Survivorship Care Toolkit. This toolkit, funded by the Patient Centered Outcomes Research Institute, is meant to act as a starting point to help address reported care needs of post-treatment cancer survivors, and consists of many resources, including tip sheets, facilitation guides and a worksheet to help patients prepare for their next doctor’s visit. The toolkit can be found at: http://bit.ly/AdvancingSurvivorshipPlanningGuide2019.

While the toolkit is already in use, that doesn’t mean there isn’t room for improvement. Pratt-Chapman kicked off the #CSSMchat by asking: “The Quality Framework includes engaged patients, information and resources, supportive providers, meaningful communication, care coordination, practical life support, mental health care and a medical home. Is there anything missing?”

Some of the responses included: 

Access to cancer specific exercise rehabilitation programmes!

— Patricia (Sheehan) Ferncombe, PhD (@FERNTRI)

#cssmchat I haven’t looked at all of it, but just glancing at it, are there specific places that mention living with metastatic disease, advanced disease, never post treatment.   Will dive into this later. #oncsurv #metsurv

— Project Life (@ProjectLifeMBC)

I am interested in the idea of the medical home for cancer survivors. What does that look like? #CSSMchat

— Jennifer M. Jones (@jjonestoronto)

Pratt-Chapman described a medical home for cancer survivors as “coordinated care where all records are in one place and your doctor knows and communicates with all of your other providers.” A second chat participant chimed in to ask whether this should all be done online. Are there accessible apps or portals to enable this, which aren’t tied to a single institution? Here, Pratt-Chapman pointed out that this can be done broadly, but that “electronic health vendors are not getting paid by collaborating. The business model needs to change.”

Currently, Pratt-Chapman is leading a study to learn about the experiences of cancer survivors and providers during the COVID-19 pandemic. For example, recent studies have already demonstrated that there has been a significant decline in the number of new cancer diagnoses, where delayed cancer diagnoses and treatments could mean worse outcomes. The GW Cancer Center has already developed a tip sheet for coping with COVID-19 to their toolkit. 

In the #CSSMchat, Pratt-Chapman asked cancer survivors: what has been your biggest challenge as a cancer survivor during the COVID-19 pandemic? For healthcare providers, what has been your biggest challenge in caring for survivors during the pandemic?

As a #cancersurvivor it was the unknown of when I would get the MRI follow-up I have every year. I had my MRI 2 months later than what it was expected because they stopped imaging across my province because we were the epicenter of the pandemic in Canada

— Vicky R (@mtllatina)

As a result of COVID-19, our @PMCancerRehab team switched to virtual care in March. While we have started to see some patients in person, most continue to be on-line. #CSSMchat

A total of 1968 virtual patient @PMCancerRehab visits were completed during the first 90 days of the pandemic!  #CSSMchat

The majority of program visits could be adapted to virtual delivery, with some modifications. Interestingly, virtual care demonstrated an increase or maintenance in the # of completed visits by appointment type vs in-person care, with attendance ranging from 80-93%. #CSSMchat

— Jennifer M. Jones (@jjonestoronto)

While COVID-19 has disrupted multiple aspects of cancer care, it has also introduced new opportunities, such as the wide-spread provision of telemedicine. Pratt-Chapman led a survey of U.S.-based cancer care survivors and providers to ask about some of the challenges associated with accessing health care services, and their experiences with telemedicine. Results will be shared in 2021. Similarly, she asked cancer survivors tuning into the #CSSMchat: how has the pandemic affected your access to needed healthcare services?

Yes my appointment with my fertility clinic got cancelled. Chemo made me infertile and that appointment was booked 3 months in advance. It was a hard pill to swallow, but I understood the situation.

— Vicky R (@mtllatina)

Thankfully, it hasn’t really affected my screening much, although I did delay all my follow up visits (Aftercare, Onco, Derm, etc) by a few months.

— Diana Merino Vega (@d2merino)

Everything for my still-metastatic still-alive #survivorship #kidneycancer f/u care including imaging, web/telephone consults has gone very smoothly (Toronto) #CSSMchat

Only difficulty now would be the timing of any intervention: better to wait things out until the spring vs taking risk of inpatient care during 2nd wave? Inclined to wait. #CSSMchat

— Deb Maskens (@DebMaskens)

Pratt-Chapman then shifted to the topic of resilience during the COVID-19 pandemic, suggesting a number of tips and resources, such as exercising regularly, using telemedicine where possible, staying connected and cultivating mindfulness. But just as importantly, Pratt-Chapman noted that sometimes resilience comes in the form of accepting our negative feelings and letting them pass through us, noting a relevant piece from The New York Times.

To end, Pratt-Chapman asked cancer survivors: what has been your biggest source of resilience during the pandemic? Similarly, what strengths did healthcare providers draw from to get through this challenging pandemic?

Exercise… even going out for a walk has been crucial. Definitely felt the need for it and how important it was for my physical & emotional state when we had to quarantine! In the future, i want to remember how much I needed exercise so i don’t take it for granted #CSSMChat

— Diana Merino Vega (@d2merino)

I understood being healthy was a privilege. So when I lost my job in April, I decided to help in a nursing home in Montreal and worked there for 2 months. Surviving cancer made me fearless but more empathetic and resilient, I was scared of catching covid19 but I needed to help.

— Vicky R (@mtllatina)

Try free app: http://covidcancercare.com Great for decreasing stress and creating coping strategies in people after a cancer diagnosis who have anxiety and concerns during #COVID19. @mark_elfers @DianneSF

— Lisa Kennedy Sheldon, PhD (@lisaksheldon)

To help our @PMCancerRehab team we have hosted team cooking classes, meditation and yoga. We are starting weekly virtual coffee breaks. #CSSMchat

— Jennifer M. Jones (@jjonestoronto)

“I appreciated hearing from survivors and other researchers during the chat,” says Pratt-Chapman. “Specifically, I appreciated the questions about how aspects of quality cancer survivorship care fit into the Framework I shared. Peer and community dialogue is critical to define and refine frameworks to be useful in practice.”

Moving forward, how will this chat inform Pratt-Chapman’s work?

“I think there is a lot of potential to share research findings via social media to reach people outside the “ivory tower,” she said. “I make a concerted effort to share my research findings across various social media platforms; however, facilitating a structured dialogue has potential for higher impact, particularly with the ability to dialogue with others.”

Summary of #CSSMchat hosted by Emily Wolfe Phillips on July 31st 2019. “How are cancer caregivers managing their own health needs and what can we do to better support them?”

For July’s chat we were delighted to have Emily Wolfe Phillips hosting. Emily is a PhD student from the University of Ottawa focusing her studies on health behaviours among cancer caregivers. Emily has kindly written a summary of her #CSSMchat below.

“T1: How has caregiving had an impact on your life (as a caregiver yourself or as a cancer survivor, researcher, or healthcare provider working with caregivers)?”

Several participants who have been caregivers and who are now cancer survivors expressed a better understanding of the demands of caregivers as well as a unique perspective within the healthcare system. This was highlighted by @megsnuggets “A1: As a caregiver and a cancer survivor I have a whole new appreciation for the dedication and love it takes” and by @ViolentKuchar “T1: as someone who was chronologically a caregiver first and a patient second, caregiving provided me with more realistic expectations about navigating the healthcare system. For example, I wasn’t mad when my appts took hours longer than expected.”

Researchers and clinicians also shared their perspectives on the impact of caregiving. @DrClaireC expressed the dedication, energy, and compassion she sees in caregivers “A1: Wow, I’m finding this hard to put into words! I’m a provider, and I often work with caregivers. Every day I’m impressed by the dedication, energy, and compassion that they bring to the table. I just wish that we had more services/support for caregivers!”

T2: What self-care strategies do you use if you’re a caregiver, or would you recommend to a caregiver in your life, professional practice, or research to promote caregivers’ own physical, mental, and social health and wellbeing?

T2a: Do you or any caregivers in your life, professional practice, or research use health behaviours like physical activity, healthy eating, or getting adequate sleep as a form of self-care?

Caregivers, survivors, clinicians, and researchers identified a wide range of strategies such as self-compassion, maintaining social interaction and support, mindfulness, eating well, and being active to help maintain caregivers’ own health and wellbeing:

“A2: Ask for help and continue doing the things you were doing before you entered the role as a caregiver. Keep doing activities and maintaining a social life. Remember to love yourself and be kind to yourself. And never forget to always put yourself first” @megsnuggets

“A2: Some evidence to support self care strategies such as self-compassion, relaxation and meditation, eating well, trying to get some physical activity (just taking a walk if you can), getting enough sleep and trying to stay connected socially.” @jjonestoronto

“I keep trying different things to see what helps me most as I would guess everyone is different . Mindfulness, calm app, breathe+ app, acupuncture, naturopath, biofeedback, music, yin yoga. The thought of not being alive to care for my daughter motivates.” @tat_fet

“A2a: I talk to patients and caregivers a lot about the HALT principle! When you’re feeling distressed, check to see if you’re Hungry, Angry, Lonely, or Tired. It seems simple, but when these basic needs are not met, it’s WAY harder to deal with stressful situations.” @DrClaireC

“A2 – Remember what they tell you on an airplane. Put your air mask on first before helping someone else. The same holds true for being a caregiver. If your reserves are empty, you can’t help someone else.” @SYusishen

Despite many positive strategies, difficulties making time for these strategies were expressed:

“A2: I know a lot of caregivers who will – understandably – put off their own medical care to prioritize the patient’s care. Finding/taking the time for medical/dental/vision appointments can be challenging, but is also super important for caregiver health!” @DrClaireC

“A2a: It can be so hard to find the time for these self care activities but they help!” @jjonestoronto

It is also important to note that there is no “one size fits all” solutions for caregivers, as highlighted by @DrClaireC, “These are all such great self-care strategies! I also think it’s important to have a variety – not all strategies will be helpful for every time/situation/stressor. It’s just like having all different kinds of tools in your toolbox, right?”

T3: Are there any resources, programs, or support groups in your community that help caregivers engage in self-care and promote their own health?

Several resources identified are presented below:

“A3: The 4th Angel program ((link: http://4thangel.org/) 4thangel.org) does peer mentoring over the phone – much of their services are patient-oriented, but I do think they also provide peer mentors for caregivers!” @DrClaireC

“T3: this is a link to a good resource for people living in Toronto (GTA) from Princess Margaret (link: https://t.co/Vwfl548QKW?amp=1)” @jjonestoronto

“#CSSMchat The Cancer Support Community in the US also has some caregiver resources and support groups (link: https://www.cancersupportcommunity.org/caregivers) cancersupportcommunity.org/caregivers” @jjonestoronto

“I found this recently and it seems like a great thing to for healthcare providers to be consistent on to help implement to try and standardize the psychosocial needs which arise for both patients and caregivers/families. (link: https://www.mattiemiracle.com/standards) mattiemiracle.com/standards” @tat_fet

“A3: @colontown provides online support communities for colorectal cancer caregivers & patients. They have groups where we all talk, and separate safe spaces for only caregivers & only patients. #CCSMchat #crcsm” @ViolentKuchar

Overall, it was expressed that although resources do exist, they remain difficult to identify and access:

 “A3 – There are resources, but they are difficult to find, especially when the focus is on the patient. Many people don’t realize that psychosocial oncology is for both the patient and their family and friends.” @SYusishen

“A3 #CSSMchat not really that I’m aware of. I’m aware of an online tool for some free counseling sessions, and some charities have a few parent nights annually but that’s all I know about.” @FrugalPharm

T4: What do you think healthcare providers, community organizations, and/or researchers can do to better support caregivers?

Suggestions to better support caregivers included better integrating caregiver support and distress screening where the care recipients are being treated, more awareness and recognition of caregivers by healthcare providers, and more tangible support.

“A4 – Include the caregiver’s wellness check along with the cancer patient. Ensure they are aware of how important it is to take care of themself, and not let cancer and caregiving take over their life.” @SYusishen

“A4 #CSSMchat. I addressed this a bit in another answer: medical support where caregivers are at. Perhaps (not just 10 minute in the chair) massage services after months of sleeping on chairs or benches? And another pet peeve: more monetary support, less feel good branded “swag”” @FrugalPharm

“#CSSMchat for providers, I think being more proactive in addressing how caregivers are caring for themselves, especially if they voice a concern or frustration! And, I would love to see more remote work options… be it “subsidized” work through charities- even stuffing envelopes” @FrugalPharm

“A4: Some providers are better at this than others, but remember to ask how the caregivers are doing, too. It breaks my heart when I ask a caregiver how they’re holding up, and they say “no one else has asked me that” 💔” @DrClaireC

“I think a lot of cancer centers have patients complete a distress thermometer/checklist at their visits – it lets the team know if there’s issues to check in about. Why not just have the caregivers fill one out too?” @DrClaireC

Conclusion

The chat began with participants introducing themselves and discussing how caregiving has had an impact on their lives (topic 1). Participants highlighted challenging aspects of caregiving such as navigating the healthcare system, discussed caregiving from both a cancer survivor perspective and from a caregiver perspective, and providers working with caregivers shared their experiences. Next, self-care strategies to promote caregivers’ health were discussed (topic 2). Strategies such as self-compassion, social support, mindfulness, eating well, and being physically active were identified as helpful; however, caregivers face challenges with implementing these strategies. Participants then discussed resources to help caregivers (topic 3), though some participants were not aware of where to access support and the consensus was that such resources are not easily accessible. Last, participants suggested ways that healthcare providers, community organizations, or researchers can better help caregivers (topic 4). Going forward, caregivers may benefit from better acknowledgement of their role, more check-ins and/or distress screening, services in locations convenient to caregivers (i.e., where care is already being provided to the cancer survivor), and more monetary support. Going forward, it is essential to make sure caregivers’ experiences and preferences are being heard by co-designing resources to make caregivers’ mental and physical wellbeing a priority.

#CSSMchat hosted by Deb Maskens, “Living with chronic cancer.” Summary from June 26th 2019

On the 26th of June, we had a wonderful chat on “Living with chronic cancer,” hosted by Deb Maskens, a patient advocate for kidney cancer, co-founder of Kidney Cancer Canada and Vice-Chair of the International Kidney Cancer Coalition.

Our facilitator kindly wrote a summary of the chat, including the questions and themes that emerged from our contributors. You can read these below.

T1. Intro – what does living with “chronic cancer” mean in your situation? Ongoing treatment for metastatic disease? Episodes of recurrence? Living with late term effects? #CSSMchat

Deb Maskens: “Different groups of survivors emerged here with different survivorship needs. What was clear is that there are different reactions to the term “chronic cancer”. Some who are dying or see others around them dying reject the term ‘chronic’ altogether (i.e.,for metastatic breast cancer — they see the disease as progressive and fatal, so not having achieved a time when we can call it a ‘chronic cancer’). Others commented on having slow-growing indolent cancer and the challenges of having others understand/accept that they have stage iv disease that isn’t in remission, isn’t NED (no evidence of disease), but isn’t always being treated. And for some the term ‘chronic cancer’ means living with the after effects of treatment (e.g., neuropathy) while not being on active cancer therapy anymore (the side effects are chronic).

T2. What issues related to your chronic cancer perspective do you wish your Healthcare Team better understood? #CSSMchat

Deb Maskens “That we long-term survivors are mostly figuring things out for ourselves because no one seems to have the answers about lingering side effects, late-terms effects, and impacts of sequential interventions across years, decades…”

“That we are people first, patients second. Trying to live our lives and co-exist with the cancer/effects; that even the “successful” survivors (from disease management perspective) have been profoundly impacted.”

T3. Healthcare professionals/researchers – from your experiences with people living long-term with cancer, what research do you think is needed? #CSSMchat

Deb Maskens: “More research on caregivers taking care of long-term cancer survivors. Impact on caregiver careers, caregiver issues for those living with caregiver issues for 5, 10, 20 years when there is no “getting back to normal” in sight, only uncertainty. Add to this concerns about financial impacts (costs, insurance, mortgages) and other barriers (travel insurance, retirement planning).”

“Overall, more research on the needs of metastatic patients needed; including the impact of repeatedly losing fellow patients to the disease, recurring cycles of grief.”

T4. What are the impacts on the lives of chronic cancer caregivers/family members? #CSSMchat

Deb Maskens: “Largely unknown. We noted that patients/caregivers get lots of support in the beginning with a new cancer diagnosis, but that can fade over time and it is difficult to keep calling on the same people. Perhaps compassion fatigue.”

Our next #CSSMchat will be on July 31st. We have a wonderful speaker and topic lined up and will be announcing more details on our Twitter page soon. Hope to see you there!

Would you like to host a #CSSMchat?

After our first few successful #CSSMchats, we would like to put a general call out for people to facilitate a chat! The chats are always on the last Wednesday of each month – if you are in North America, we host them at 9pm EST/6pm PST. However, in the next few months, we would especially like to feature a facilitator based in Europe doing a chat in the evening there so that our European followers can participate in a chat!

We welcome applications from anyone involved in cancer survivorship – researchers, healthcare professionals, survivors, advocates, organizations* and caregivers. As you may have seen from previous chats, our facilitators raise 4 discussion topics during the evening around one central theme. These topics and themes can be varied – but we ask that you try to involve as much of our community as possible, for example – researchers/healthcare professionals must seek to involve survivors in at least most of the discussion topics for the night.

We don’t want to overly dictate the content of chats, so if you have an idea and want to discuss whether it will work for a chat – please do send us a message either on the @CancerSurvSM Twitter account (our DMs are open) or via the form here and we will happily discuss it with you.

As an aside, if you’d like to talk to our community but don’t think a #CSSMchat is suitable for you – we have some interesting plans in the works to allow people to take over our account for a period of time to discuss personal experiences, thoughts, research, advocacy etc. Stay tuned!

*if your organization is a non-academic, for-profit enterprise, please do contact us first to discuss.

#CSSMchat hosted by Nicole Stout, PT. Summary from May 29th 2019

Hello everyone, sorry for the delay in getting this tweet summary out. Busy month so far!

On 29th May, we were lucky to have Nicole Stout host our chat. Nicole is specialist in physical therapy and rehabilitation for those living with and beyond cancer and her chat focused on activity for cancer survivors.

Below, we have posted the discussion topics and a few replies which summarize some of the themes of the chat. We had over 350 tweets during and shortly after the chat and we are working on a way to collate them all for easy access. We will update this post with this as soon as possible.

The first topic that Nicole introduced was: “It is quite a challenge to stay active during cancer treatments. Did you receive any advice or guidance about how to get active or stay active? #CSSMchat

Kimberly Miller, PhD: “Researcher here but anecdata from patients at our cancer center is they’re told to stay active but don’t know what that means! No clear guidance. #CSSMchat

Jennifer M. Jones: ” The problem in Canada is that there is very little access to physio unless you are an in-patient. #CSSMchat

Sarah: “As a young adult with cancer in the UK I felt invisible. After a 10 week in-patient stay with wasted muscles I had to practically beg for a physio assessment. I got one and was deemed ok for discharge and got no follow up or exercise advise #cssmchat

Mary Beth Collins: ” In 20 years, my son has never seen a physiotherapist. #CSSMChat

Emily McIntosh: “I didn’t get any guidelines, but was told that exercising would help with symptoms. #CSSMchat

Our second topic of the evening was: ” Exercise programs and advice for people living with and beyond cancer are becoming more and more common. Did you find a program that was useful for you? And, what was most helpful about it? #CSSMchat

@megsnuggets “I started remission a few months ago. I’m a Stage 4 Ovarian Cancer Survivor. I’m just in the stage where I’m getting back to working out and the program I’m in is kickboxing and rock climbing. It’s important to choose something you enjoy and there’s so much out there #CSSMchat

Jennifer M. Jones: “This is really important advice! Do what you enjoy! #CSSMchat

Jackie Bender ” I agree. It is very important to select an exercise activity that you enjoy. I think it would be great if the exercise guidelines for cancer survivors could be adapted or translated for a wide variety of exercises forms (e.g, kickboxing, climbing, yoga).”

Mary Beth Collins: “I’m still stuck at “Exercise programs and advice for people living with and beyond cancer are becoming more and more common. ” Didn’t even know that. Where does one even begin to learn more?”

Dr. Martin Stoermer: ” One final thing from me. My physio put me on to walking around empty shopping malls in the early morning before opening. There’s a few seniors walking groups in our local mall. Good for immune compromised folk too as minimal crowds to catch bugs from, and seats! #cssmchat

The third topic was: “Are you worried about exercising safely? Have you received advice about safety with exercise? (good or bad advice…) #CSSMchat

Emily McIntosh: ” Unfortunately, when I go too hard w/ cardio I get a headache & vomiting. That is unique to me, however, so I keep an eye on heart-rate while training and slow down if I need to. It hasn’t prevented me from doing anything and I would recommend exercise to everyone! #CSSMchat

@realslimsheyla ” A3: My biggest concern was finding resources that 1) held me accountable 2) required me to be with a human 3) were catered to my needs specifically for military readiness while still being safe w/ my weak muscles and neuropathy. Still have yet to find anything lol #CSSMchat

Sarah: ” A3. Raised this many times but no real advice given. I have #PelvicRadiationDisease and have had to guess/go it alone. Joined a gym and had to stop after 7 months (only gentle/moderate exercise) due to bone pain which no one can explain to me #cssmchat

Dani Taylor: ” I think that there is exercise literacy, just as there are other types of literacy we discuss (health literacy, etc.). We treat movement like it’s obvious, but for many (myself included) it can be intimidating! #CSSMchat

Our final topic was: “What is some advice that you can pass along to others who might say “I’m just not an exerciser”, but want to stay active? What advice did you get that supported you the most? #CSSMchat

Shelby Waters, MPT: “Explain why it matters. The research behind prescriptive exercise is impressive enough to change minds on its own. Then support the patient in finding something they will enjoy, bc that exists for everyone! #CSSMchat

@realslimsheyla: ” A4: Get. The. Caregivers. Involved. When doctors would tell me to exercise, I gave them death glares lol. But when it was my mom or my PCA harassing me, I tended to listen more. More or less, finding environments that are open for even just walking like malls is cool. #CSSMchat

Heather Campbell: ” The exercise is treatment. You take your prescribed drugs for cancer, therefore you should take the prescribed exercise. Then celebrate on the day you’re okay to swim or go in a public pool. Public pools are basically human soup. #CSSMchat

Rhea Crighton: “As a pain specialist nurse and someone whos had cancer I know how important it is to move and be active. Sometimes the word “exercise” scares people so I encourage people to just move and do more of whatever makes them feel good, great for body and mind! #motionislotion

Allie Morse: ” Find what works for you. I never thought I would enjoy spin class, but I’ve found it to be easily adaptable depending on energy level (you set your own resistance) & I don’t need to worry about not always feeling my feet. #CSSMchat

Thanks Cancer! “Even a walk around the block will help. Set a time, make a goal, and do SOMETHING! Here’s a podcast for our thoughts on cancer & exercise for those who don’t prefer the exercise of reading: #CSSMchat

Thank you to everyone who joined us for May’s #CSSMchat. We are currently in the process of scheduling June’s chat and will announce our facilitator as soon as possible.

Summary of our first #CSSMchat – Weds April 24th 2019

The first #CSSMchat was held on the evening of Wednesday 24th April. We had 233 tweets using the #CSSMchat tag during the chat hour (and many more afterwards!) from almost 30 accounts, featuring survivors, caregivers, researchers and healthcare professionals.

We were scheduled to have a session hosted by Nicole Stout, an expert in physical therapy and cancer rehabilitation for cancer patients and survivors, but due to some last minute travel delays, she was unable to host (her session has been rescheduled for 29th May).

Instead, we took the opportunity to find out more about our new community members and what was important for them. We have curated a selection of tweets which summarize the main points raised in the discussion topics.

First chat topic, T1: What topics in survivorship are most important to you? What would you like to see us cover here?
This was a very busy topic with a lot of excellent points raised. Main themes were mental health, financial toxicity and the role of caregivers throughout survivorship. Others also mentioned pain and symptom management, fertility and also discussion of how any interventions could be implemented successfully.

Cancer survivors and caregivers talked about the emotional impact of late effects, coping with being a cancer survivor and the lack of cancer patients/survivor involvement in some decision making processes:

“You don’t expect problems decades later even if you’re told to. Feeling of regression from “healthy” to “sick/dysfunctional” identity is hard! – @CESchilstra

“Lack of representation of cancer pts and survivors advising programming and interventions that are designed for them’ – @realslimsheyla

“Survivors need to know that their experiences are not felt in isolation. There are many others who experience the challenges that go along with feeling misunderstood.” – @michaeltaccone

“My 22 yr old (survivor) is convinced no one understands him. The psychosocial supports needs to be there before :5 yrs, when things get more challenging in mind, body & spirit.” – @marb1111

“Late effects of treatment – from PTSD to infertility to secondary cancers – and how that is not always communicated to the patient. And how the heck can we keep up with all these specialist appointments (survivorship plan adherence)!” – @magthenomad

Health professionals and researchers also shared their interests and expertise:

“Mental health. Particularly the long-term impact of cancer diagnosis and treatments on emotional outcomes. We know that depression and anxiety can persist at clinical levels for 5+ years after diagnosis! – @DrClaireC

“Many people get messaging from their docs about exercising and eating better. But how does this get implemented into everyday life?” -@AlixSleight

“Pain and symptom management are important areas that are often not discussed in the survivorship context” – @PerriTutelman

Second chat topic, T2: What can Cancer Survivor Social Media do to help you in you as a survivor and/or with your advocacy, research or healthcare work?

A lot of the discussion here centered around increasing connections between survivors and members of the research community.

“From a research perspective, it would be great if @CancerSurvSM could help encourage participation in cancer survivorship research studies.” – @benderjack

“I’m grateful for any efforts that build bridges between survivors and researchers. We need to talk to each other more often.” – @AlixSleight

“I hope that @CancerSurvSM can be a place to facilitate communication between students and researchers and be a place to involve survivors and caregivers in the research process from engagement in the early phases to participation in ongoing research.” – @emily_wolfe6

“Help give survivors (& those living with active disease) a voice & a platform to be heard. Important insight can be provided by patients but not enough are given the opportunity to get involved in research. We are a HUGE untapped resource” – @badassbaglady

Third chat topic, T3: Survivors, would you be happy to participate in research studies that were linked to via @CancerSurvSM or other social media platforms. Researchers, would you be happy to use social media to ask for research participants?

This topic was raised by the discussion and related to cancer survivors participating in research studies that recruited on social media and any issues that came with this. Should the #CSSMchat hashtag be used to disseminate information about research studies to people who may want to participate? What are the ethical concerns that come along with this?

“Do people think this would be an acceptable platform to promote research and surveys” -@jjonestoronto

“As someone involved in research, I think this would be great but would love to hear potential participants thoughts on this” – @emily_wolfe6

“Hashtags belong to the community – It’s up to individuals which research studies they want to share and how they personally vet them. #AYACSM is often used to promote #AYACancer research studies and it’s up to individuals if they want to RT, participate, etc. – @EK_Drake

“As a researcher I wonder how an REB would feel about that. As a patient and a possible research participant I’m all for it!” – @mcintose

“Yes+yes! I’m happy to participate and would love to use it to invite research participants to my research! Social media’s so powerful – as an AYA survivor it’s my go-to for connections, and as a researcher working with AYAs, I’ve found it the best way to reach them!” – @CESchilstra

The final topic centered on other initiatives which connect researchers and survivors well, with people mentioning patient-researcher forums and questions being raised about why these initiatives are not more widespread.

We thank everyone who came along to the first #CSSMchat and continued to contribute to the conversation afterwards too!

Our next #CSSMchat will be on Wednesday 29th May at 9pm EDT/6pm PST

How to join in with #CSSMchat

Our first #CSSMchat is in two days! We can’t believe how quickly time has flown, but we are eager to get started! If this is your first time participating in a Twitter chat, please do read the handy guide below to make sure you get the most out of your experience.

Always use the #CSSMchat tag on your tweets

Using the tag means that everybody in the chat can see what you are saying. We recommend using the tag to follow along with the chat, rather than looking at the @CancerSurvSM profile page – we will retweet some of the chat tweets here, but might not keep up with everything. To do this, you can put #CSSMchat in the search bar on Twitter on whichever device you are using and new tweets will pop up in real-time on your feed.

Searching #CSSMchat on Twitter desktop or any app will mean you see all of the tweets from the chat in real-time.

Introduce yourself if you feel comfortable doing so

Our facilitator will introduce themselves and then invite you to do the same. We would love to know who you are and what brings you to #CSSMchat, but also appreciate that some people just want to see what is going on and might not want to identify themselves. This is completely fine – you can always hop in and tweet at any point of the chat if you feel like it.

Chat topics

Our facilitator will introduce 4 chat topics throughout the chat. They will be numbered T1-4. When responding to a conversation topic, its great if you

For example:

@CancerSurvSM

T1: Do you find that you are more or less active now than you were before your cancer experience? #CSSMchat

@vickyyyf

A1: I’m definitely less active now than I was before, I experience sporadic pain sometimes even when walking, so I’m reluctant to try more intense exercise. #CSSMchat

Keeping language simple and accessible

Our chat is for survivors, researchers, advocates, family members and healthcare professionals. We absolutely want researchers to make new connections and talk about their work and research interests, we just ask that you bear in mind that #CSSMchat is a community where we want everyone to be able to participate and understand the conversations that are going on. Hence, if you are talking about your work and research interests, please try to use language which is free from jargon and acronyms to ensure that everyone is able to understand you.

At the end of the chat hour

In the last 5 minutes of the chat, the facilitator will thank everyone for coming and briefly summarise some of the takeaways from the chat. Please do feel free to continue talking afterwards and make new connections and contacts from the chat.

After the chat

We will be working to create chat summaries posted on this blog site so that everyone can go back and look at the key takeaways from the discussion. We also hope that people who weren’t able to make the chat because of time zone differences or other commitments can then catch up and be involved in our community.

What if I have any problems during the chat?

Both our facilitator and an admin will be monitoring the #CSSMchat tag during the session – feel free to ask any questions using that tag, or DM us at the @CancerSurvSM account and we will get back to you as soon as we can.

We really hope you will join us for what we hope will be the first of many CSSM chats!