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Fear of Myeloma Recurrence
If, as the study linked below finds, more than half (59%) of all cancer patients report at least a moderate sense of fear of cancer recurrence (FCR), my guess is that fear of myeloma recurrence is much more… possibly 100%. I believe this because myeloma is an incurable blood cancer. Everyone relapses eventually.
I have been living with MM since my diagnosis in early 1994. Though I think about my MM recurring, I don’t think that I fear my MM recurring.
I posted the video below because I thought the speaker’s six strategies of managing fear of myeloma recurrence would be helpful. I use or have used several of the strategies.
How to Be FREE of Cancer Anxiety (FEAR of RECURRENCE)
The solution to FCR for myeloma survivors? Like most every aspect of managing MM, I think each MM survivor will use or employ different techniques to manage our FCR. I think that you will probably use at least one of the six strategies discussed in the video above.
In my case, I have found that what the video above talks about, to “share your experience,” is my primary technique to cope with my fear of myeloma recurrence. I blog, I admin. my own online MM group and I frequently post in other online MM groups. To be clear, I share with MM patients, survivors and caregivers. I’ve learned that
Do you have fear of myeloma recurring? What are your triggers? Email me with questions or comments about your fear of myeloma recurrence- David.PeopleBeatingCancer@gmail.com
Good luck,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta‐analysis
Objective
Care for fear of cancer recurrence (FCR) is considered the most common unmet need among cancer survivors. Yet the prevalence of FCR and predisposing factors remain inconclusive. To support targeted care, we provide a comprehensive overview of the prevalence and severity of FCR among cancer survivors and patients, as measured using the short form of the validated Fear of Cancer Recurrence Inventory (FCRI‐SF). We also report on associations between FCR and clinical and demographic characteristics.
Methods
This is a systematic review and individual participant data (IPD) meta‐analysis on the prevalence of FCR. In the review, we included all studies that used the FCRI‐SF with adult (≥18 years) cancer survivors and patients. Date of search: 7 February 2020. Risk of bias was assessed using the Joanna Briggs Institute critical appraisal tool.
Results
IPD were requested from 87 unique studies and provided for 46 studies comprising 11,226 participants from 13 countries. 9311 respondents were included for the main analyses. On the FCRI‐SF (range 0–36), 58.8% of respondents scored ≥13, 45.1% scored ≥16 and 19.2% scored ≥22. FCR decreased with age and women reported more FCR than men. FCR was found across cancer types and continents and for all time periods since cancer diagnosis.
Conclusions
FCR affects a considerable number of cancer survivors and patients. It is therefore important that healthcare providers discuss this issue with their patients and provide treatment when needed. Further research is needed to investigate how best to prevent and treat FCR and to identify other factors associated with FCR…
In this study we distinguish between people who have active disease and those who no longer have active disease, by stratifying the results by these groups and calling them patients and survivors, respectively…
Clinical implications
As we have shown, FCR is a highly prevalent concern, affecting more than half of cancer survivors and patients. Consequently, this is an issue that needs to be addressed by healthcare providers and policy makers. We recommend providing brief psycho‐education about FCR to all cancer survivors and patients, to normalize FCR and help individuals seek support when they need it, even if they are no longer undergoing hospital‐based treatment or surveillance.
Due to the high prevalence of FCR, psycho‐education for all may be more effective than screening. An example of a brief psycho‐educational program is a recently piloted intervention including normalization, prognostic information, recurrence symptoms education, advice on managing worry and if FCR was high, referral to a psycho‐oncologist. 96Since FCR exists at all times since cancer diagnosis, we also recommend discussing FCR on multiple occasions…”
fear of myeloma recurrence