Fear of Recurrence

One of the most common things that cancer patients deal with is the fear of their cancer coming back or spreading. This fear of recurrence causes a lot of anxiety in the cancer community, especially when it comes time for scans, biopsies, and follow up appointments.

When you receive a cancer diagnosis, the treatment goal most of the time isn’t a “cure”. We hear things like “remission”, “no evidence of disease” (NED), “progression free survival”, and many other ways of saying “hey you are still kicking!”. Basically, it’s survival. We get treatment to rid the body of cancer for as long as possible. For many people it isn’t a question of IF the cancer will return, but WHEN. This leads to a lot of fear and anxiety around the possibility of the cancer coming back.

For me personally, this fear is constantly hovering just under the surface. Most of the time I don’t think about it and focus on the here and now, taking things one day at a time. The further into treatment I get, however, the more I start to think about what the future holds for me. The future can be daunting at times given everything I have been through in the last three and a half years. I watched Luke relapse not once, but twice. I saw him fail multiple treatment protocols and saw the toll it took on him each time the doctors told us it hadn’t worked. This makes thinking about the future so tough. We were diagnosed with the same type of cancer, acute B-cell lymphoblastic leukemia, but our response to treatment and overall experience was/is very different.

Having watched Luke go through relapse is what makes my personal fear of relapse worse. It is not some fictional fear for me. I saw it happen first hand and that makes it so much more real. Every little ache and pain or side effect brings on a sense of dread. I know this is a common theme among cancer patients. How do you know if a pain is from picking up something heavy, if a bruise is from walking into a door frame, or is this headache from not drinking coffee. Or is it the cancer? Has it come back? Did it spread? Are these side effects from treatment? Is this a normal life issue or am I back in the thick of it? Should I call my oncologist about this or my primary care? Every little thing can raise a thousand questions and anxieties.

When I look back at 2019 to when Luke first relapsed I remember us being in complete shock. So many times his back pain was dismissed as normal pain from over exerting himself. There was nothing in his blood work or tests to indicate that he had relapsed. There was no way for any of us to know. Then when he was brought to the hospital after his vertebrae collapsed they ran all sorts of scans to figure out what had happened. This is what showed that the cancer had come back, this time on the outer layers of his bones not the marrow (hence why we and the doctors had no reason to suspect relapse).

This first relapse was such a shock to us and it turned our world upside down. When he relapsed the second time however I think that both of us knew it was coming. To be honest, at so many appointments I felt like we were just waiting for them to tell us it was back again. Every time we went in we were so anxious. Even thinking about it makes me nauseous.

Now that I myself am in remission and in the maintenance phase of my treatment, I often start to feel myself getting comfortable with how far I have come. The anxiety is still there though and it comes in waves. Sometimes I feel like I am on the other side of this. Other days every little ache and pain fills me with dread.

I hope that these fears will lessen over time as I get further from my initial diagnosis and closer to finishing treatment. I often wonder if it will ever truly go away though. At what point, if any, will cancer patients not have the anxiety associated with the fear of relapse. When treatment is over? A year later? Five years? For the rest of our lives?

It’s a scary thought living the rest of my life in fear of this disease coming back. That is reality though. All we can do is take things one day and one challenge at a time.

Love, LB

4 thoughts on “Fear of Recurrence

  1. Lindsey, I feel what your going through. We have this hanging over our heads also but I can’t imagine what your going through. I truly believe your going to beat this. Just know we are here for you anytime and we love you. Dad.

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  2. I read your posts all the time and I feel you will weather this . I am rooting for you. My sister passed five months ago from CNS lymphoma after 8 month hard battle and I saw what cancer does to a family and the patient. The worries about every ache and pain. Keep up the battle. You got this.

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  3. I can’t imagine that fear! But please focus on today ! One day at a time because your fear of it coming back may consume your ability to live for today ! You have been threw so much ! You deserve good days 💕💕💕

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  4. I can’t imagine that fear! But please focus on today ! One day at a time because your fear of it coming back may consume your ability to live for today ! ! You deserve good days 💕💕💕

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