These two words can provide a lifetime of anxiety and fear for cancer survivors.
The truth of the matter is: It is impossible to fully eliminate the thought of cancer coming back. This is compounded when you’re right out of treatment and no longer actively fighting the disease or later in life when you start experiencing symptoms that are related to when you were first diagnosed.
This resource is meant to help cancer survivors work through any anxiety or fearful thoughts of cancer recurrence. The following text includes natural thoughts and feelings immediately after treatment, short-term and long-term, finding and utilizing support groups, the importance of mental health, and online resources you can help.
The message that I want to convey right at the onset is: You’re not alone. The fear of cancer recurrence is a natural one for survivors. What we can do is arm ourselves with knowledge and how we can combat these feelings.
I’ll also share some resources where there are online communities of folks that are going through diagnosis, treatment, and post-treatment life.
Immediately After Treatment
Often, the fear of cancer recurrence happens strongest immediately following treatment completion.
Think about it: you just got through front line treatment. You likely had chemotherapy, radiation, surgery, or a combination of these.
You were actively fighting against your cancer disease.
Now – you’re supposed to get back into the swing of things. Life before cancer. Before this life-altering disease was discovered.
And that’s scary!
So these feelings of nervousness, or anxiety, that invade your mind during this time are completely natural. You’re not different because you have this fear. It’s about how you cope with this fear; how you refuse to let is paralyze you or limit your post-cancer life.
Short-Term / Long-Term Post-Cancer
The fear of recurrence might leave your day-to-day but years after treatment this fear might pop up unexpectedly.
Perhaps a visit to the hospital where you had your treatment will give you some anxiety.
Or news about someone you know becoming diagnosed with cancer might make you reflect on your own diagnosis and treatment journey.
These types of triggers are natural and are bound to happen. What you shouldn’t do is try to shy away from these feelings; this can lead you to “shutting down” or having a negative mental image about yourself or your life.
Instead, look to reflect on the experience. And focus on any positives that may have come about since treatment. Did you meet new friends? Did the experience make you stronger in any way?
Additionally, obtaining a pet can lead to joy in the lives of cancer patients. Careful consideration of the pros and cons of pet ownership should be thought of first.
Take the sadness or fear, reflect, and then turn it into positive thinking.
Cancer Support Groups
There are a multitude of both in-person and online support groups for those affected by cancer.
- The American Cancer Society has a search tool to find local groups in your area. These typically range from different cancer diagnoses as well as different age groups.
- Cancer.net has a search tool that starts with what diagnosis you have to find groups.
- Your local hospital or cancer center should have a list of local groups along with meeting times. Ask the receptionist for more information.
Mental Health Help
Ask your oncologist or local cancer care center for recommendations for psychiatrists that specialize in counseling those who had have a cancer diagnosis.
You’re looking for a trained professional in psychosocial care, which is the specialty of counseling someone affected by cancer.
A psychiatrist who specializes in psychosocial care can help combat recurrence fears as well as address any other issues you may be having.
Unfortunately, there isn’t a great resource online to use to find a psychosocial psychiatrist. Our recommendation is to talk to your local nurse navigator or oncology department and ask for a referral or simply those qualified in the area and contact information.
There are many different resources you can use online based on the type of cancer you were originally diagnosed with.
For folks who live in rural areas, online support may be the only option. Fortunately, there are a lot of resources you can utilize.
- Cancer.net has a comprehensive list of cancer organizations. Included are phone numbers and website addresses.
- The Association of Cancer Online Resources has a large list of organizations that are specific to having communities online.
- CancerCare has a long list of support communities that they moderate. These often have rolling start dates for new online start times.
- Stupid Cancer has a fairly active community where folks discuss recurrence fears.
- Specific Reddit subreddits can provide support. The general r/cancer has lots of topics; it might be wise to track down a specific subreddit that is your cancer type, such as r/lymphoma, which I moderate.
I recommend a terrific podcast (or recorded webinar) from CancerCare titled Fear of Recurrence and Late Effects: Living with Uncertainty. This audio resource is part of their The Ninth Annual Cancer Survivorship Series: Living With, Through and Beyond Cancer. This specific podcast has three experts that bring unique perspectives to living with the thought of recurrence.
You can also listen to the podcast below:
If you want something a bit more personal than an online forum or listening to an audio recording, watching a video can help you connect a bit more.
I love this positive message from the Happy Chemo! channel:
The Breast Cancer Answers YouTube channel has a video that covers four tips for coping about recurrence fears that can be applied to any type of cancer diagnosis.
Watch it below:
Cancer Support Community has some good, individual-style interview videos that show coping with cancer affects everyone.
One that I recommend for a general “reducing fear and stress” message is below:
Care To Share?
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