What if my disease returns? How to manage this common concern through your unique coping style

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Do you worry about your disease returning? If so, you’re not alone. “Fear of recurrence is one of the most common concerns after transplant,” says Jill Randall, MSW, LICSW, Be The Match Patient Services Coordinator.  In this article, we’ll explore the common triggers, suggestions for how to cope, and the story of one patient who overcame his fears and is now helping others.

Fear of relapse is common—both before and after transplant

Ted blog image with captionTed was diagnosed with acute lymphocytic leukemia, Philadelphia chromosome positive, in May 2005. “When I was awaiting my transplant, and getting a marrow biopsy every 28 days to see if I had relapsed, my fear of relapse grew with each passing month, peaking in the month prior to transplant,” recalls Ted. “But even after I got my transplant, I knew I wasn’t out of the woods. I had to find a way to ease my fears so I could focus on getting better.”

To better understand your fear, look first at what triggers it. “It’s common for specific events like biopsies to set off fears,” says Jill.

Common triggers for fear of recurrence include:

  • Biopsies, scans, and other tests
  • Feeling new aches or pains
  • BMT clinic visits
  • Anniversary of a diagnosis
  • Hearing about someone else’s cancer diagnosis or relapse
  • Stories about cancer in the media
  • Sights, sounds, and smells with negative associations

Find a coping strategy that works for you

A coping strategy can help you manage your fear.  Some examples include relaxation exercises, deep breathing, listening to soothing music, or bringing a friend to distract you while waiting for an appointment. Jill says keeping your body and mind healthy (by exercising regularly and eating nutritious foods) or finding a group of peers to talk with can also help you relax and cope with fears.

Ted uses a variety of ways to cope with his fears. “Personally, I found prayer especially helpful,but I know that’s not for everyone,” said Ted. Just talking can help a lot. While I was in the hospital, I had access to a chaplain and a psychologist, and my wife Cindy and I talked openly about everything, including our fears.” And when Ted’s doctors would ask how he was doing, he would talk about both his physical health and his emotional state.  “If you need help coping, I would encourage you to bring it up rather than wait to be asked.”

“Your care team can suggest resources and programs, including counselors, peer support groups, online tools, and relaxation techniques,” says Jill. “Medications might also be prescribed to help you feel less afraid and tense.”

Ted also created a CaringBridge website, which he describes as an absolute lifeline. “It’s hard to stay fearful when friends and family fill you with hope every day. And it can be especially reassuring to connect with other transplant patients who understand what you’re going through.”

How to recognize the signs when fear gets in the way of healing

Recovery after transplant is an emotional as well as physical process. “Fear and worry can interfere with healing” says Jill. “Talk to your care team if you notice changes in your sleep or appetite, if you’re having trouble concentrating, or if thoughts and fears are interfering with daily life.”

Learn more about understanding and managing emotions after transplant.

On bad days, Ted has another way of coping: “I’d remind myself that as long as my doctor wasn’t telling me to get my affairs in order, I was still here, I was still in the game, he says   “Then I’d tell myself that I was done with leukemia, and pour my energy into healing.”

Celebrating progress, looking forward

After transplant, Ted’s fear of recurrence changed. “The first biopsy was especially nerve-wracking, but after that, I got the most reassurance from the data, from the statistics. I realized my chances of relapsing were decreasing rather than increasing. When my doctor told me I was doing well, I believed him. I’d look back on my pre-transplant worries and focus on how far I’d come.”

Many patients who feel uncertain about their future have a hard time setting long-range goals. “I encourage them to start setting short-term goals for themselves and work their way up to more long-range goals,” said Jill. “Looking forward, anticipating an enjoyable activity, milestone or events are great ways to stay focused on the future.”

Patients support each other

Now that he’s nine years post- transplant, Ted shares his experiences and insights with other transplant patients through a peer- support program. “Being part of the Be The Match Peer Connect Program has been equally beneficial for me as for the people I talk to. It can be easy sometimes to lose sight of how far you’ve come in your recovery. But focusing on the advances is a great motivator to keep going, to make the most of each day and all the days ahead.” The Peer Connect Program can be beneficial to anyone interested in either offering support or receiving support from others.

Share your coping strategies

What has worked for you? What would you recommend to other transplant patients and their families? Share your tips, advice, and favorite resources.

One Response to “What if my disease returns? How to manage this common concern through your unique coping style”

  1. Cindy Rowles says:

    2X AML survivor. Bone Marrow transplant October 2012

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