#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!

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