Fighting The Fear Of Recurrence

(As seen in Cancer Knowledge Network’s #YARally)

Treatment ends. Your hair begins to sprout anew. Your skin slowly smooths. Your energy levels rise. You can look in the mirror and see remnants of the person you once were. You’ve trudged through the hardest journey of your life and bear the scars that tell the story. Your doctors share the latest results from your scans and there is no evidence of disease. You’re cancer-free.

It’s time to move on with your life and dream again. You’ve gained perspective and see life in a new way. You’re ready to forge new relationships and deepen the bonds you already have. You’re excited to travel and see the world in a new light. You’re ready to pursue the dreams you were reluctant to before. You’re not afraid to fail, because you’d rather try than not try at all. Your character has flourished and you are stronger and braver than ever before. Because you’ve faced your own mortality, you are now fearless.

Right?

While many survivors experience a sense of relief and celebratory whimsy upon receiving cancer-free results, those feelings don’t always last as long as we expect them to.

At diagnosis, my number one goal was to be cancer-free. I wanted to defeat this disease and move forward in my life. I accepted the fact that I would lose my fertility through a radical hysterectomy. I knew it was the only way to reach survival. I faithfully attended every chemotherapy and radiation session. I grieved the loss of my hair, the changes in my skin, weight gain, and even my nails peeling off. I could no longer recognize the woman staring back at me in the mirror, but I reminded myself that this would only be temporary. Cancer would be only but a chapter in my novel of life.

I received my first clear scan seven months after diagnosis. My doctor was elated as she shared the news. No matter that I was given a less than 20% chance to survive the first year, I beat the odds. I was cancer-free! I danced around the house, smiling genuinely for the first time in months. My husband and I celebrated. The burden of cancer began to slough off our shoulders and we were able to see the future we so desperately hoped we could share together.

But that’s not how the story ended.

Because of the type of cancer I had, I would need routine scans every three months to ensure that the disease did not return. It was time for my first follow-up scan and I felt anxious. Only three months prior, a scan showed no evidence of disease (NED), but I was aware that cancer is hardly predictable. We followed protocol and I received the most potent and effective cocktails of chemo and radiation and it had worked. But just as our celebration began, the party was over. A softball-sized malignant tumor had grown within ninety days, and I was facing my first recurrence.

That moment changed everything. The knowledge that cancer had returned with a vengeance sent chills racing through me. To the depths of my soul, I was shaken. My fear of cancer rose exponentially from the trepidation I had experienced at diagnosis. I was facing my own mortality through realistic lenses as I knew my already small statistics would shrink even more. More surgery. More chemo. More pain, grief, fear, exhaustion, and nausea.

Diagnosis pales in comparison to recurrence. At diagnosis, the majority of people feel strong and able to defeat the giant. Bright eyes and bushy tails, we are ready for the fight. Determination and perseverance with a sprinkling of naivety propelled my first battle against cancer. Recurrence comes at a bigger price. The price that we know exactly what we are facing. There are fewer unknowns because we’ve traveled the road before, and can foresee the afflictions that are to come.

It’s been four years since diagnosis, and I’ve had three recurrences after first hearing the words, “You have cancer.” Some came swiftly like the first, only three months later. Other recurrences arrived further down the road. No matter the time that we are able to live without cancer invading our bodies, it never really goes away. Though it may not be a physical presence, cancer often lingers in our emotional well-being. A ghost that haunts us, never wanting to leave. We are constantly reminded that cancer can return at any moment. It’s normal for survivors to feel anxious, depressed, and fearful once treatment ends and NED is achieved.

Some survivors feel more scared after fighting cancer than they did in the throes of the disease. Once treatment ends, we are simply left to pray and hope with every remaining healthy cell within us that cancer will no longer choose our bodies as its residency. Life after cancer isn’t always what we dream it will be, therefore we should be prepared for what may come after this chapter has closed.

In order to look forward, we must avoid looking back. Not denying the journey we trekked or ignoring the fight, but by deciding that cancer can no longer have a vice grip on our lives, we can begin to truly live free of cancer. Fear of recurrence gives power to the disease. Our anxieties can fuel cancer, giving it control over us. When fear creeps in, we must stand against it, knowing who we have become in spite of the struggles we have faced. We are much stronger than we think we are.

We have looked straight into the eyes of death, and have come out on the other side. We have been beaten down, knocked around, and yet we have survived. Our faith has been put to the ultimate test and has grown in the fire. Hope has emerged from the ashes. Though we have lost much, we’ve gained more. We are different. We have changed, developed, and flourished. We must acknowledge that though cancer affected every area of our life, we have come out on top. Living every day is a choice. Choosing joy is vital to the continued success of a healthy and happy existence.

Matthew 6:34 (MSG)

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”

22 Comments on Fighting The Fear Of Recurrence

  1. Linnea
    April 20, 2016 at 7:47 AM (8 years ago)

    Again, you’ve nailed it. Thank you for putting words to the emotions that I cannot always explain. I find peace and healing in knowing that I am not alone in this crazy experience. Keep it coming!!

    Reply
    • Stephanie
      April 20, 2016 at 7:59 AM (8 years ago)

      So glad these words resonate with you, and what an honor to be a conduit of peace! Thank you for your kind words. Be blessed!

      Reply
  2. Barbara Matrascia
    April 20, 2016 at 2:16 PM (8 years ago)

    Thank you so much for the words of hope I had stage 4 lung cancer, i am now cancer free and it will be a year this coming July. I Just came home from my 4th ct scan and it is so true what you said, I become anxious every three months before these tests. I know its was through the power of prayer that I have come through this, and your article really uplifted my spirit, glad to know in a way that others go through the same thing. Next ct scan in July,, that would bring me to one year of being cancer free…….

    Reply
    • Stephanie
      April 26, 2016 at 11:58 AM (8 years ago)

      First and foremost, congratulations!! Clear scans after stage 4 lung cancer is an incredible miracle! God is so good. I’m thankful that you’ve been uplifted through my words. I’m praying and believing that your next scan in July will be clear as well. Keep living and choosing joy.

      Reply
  3. Jeannine
    April 20, 2016 at 5:41 PM (8 years ago)

    Just returned from oncology appt with ct scan ordered. I feel like I’m in limbo waiting for the other shoe to drop. And my self-talk sez: what’s your problem- your cancerfree now, don’t worry @ recurrence. And yet I feel that emotional hangover that you referred to. Great article, really spoke to where I’m at right now, thanks.

    Reply
    • Stephanie
      April 26, 2016 at 11:56 AM (8 years ago)

      Ohhhh I totally understand. Fighting cancer isn’t just about the physical fight, it’s often more so the emotional battle that weighs heavier on us. I’m believing in you, and standing beside you as you await the results!

      Reply
  4. DB
    April 20, 2016 at 8:51 PM (8 years ago)

    Thank you so very much! I’m getting scans soon and am scared. Needed to hear these words. God bless you.

    Reply
    • Stephanie
      April 26, 2016 at 11:54 AM (8 years ago)

      Praying that not only your scans are clear, but that you feel comfort and peace as you await the results. Blessings to you as well!

      Reply
  5. Barbara
    April 21, 2016 at 11:52 AM (8 years ago)

    I’m 5years clear today. I still work with every new pain. You were spot on. I wish others understood how we feel.

    Reply
    • Barbara
      April 21, 2016 at 11:53 AM (8 years ago)

      Sorry, worry…

      Reply
    • Stephanie
      April 26, 2016 at 11:52 AM (8 years ago)

      WOOHOO! Congrats to being 5 years NED! What an accomplishment. It’s hard for others to understand because they haven’t walked it before, but that’s why it’s so important to be plugged into a community with fellow survivors. Celebrate, girlfriend. You deserve it!

      Reply
  6. carolann
    April 21, 2016 at 2:43 PM (8 years ago)

    Fantastic commentary on a scary and formidable experience. At nearly two years post-diagnosis and with no evidence of disease, I still find myself occasionally awake at night sure that the cancer has returned. Thank you for putting the feelings into words and into perspective!

    Reply
    • Stephanie
      April 26, 2016 at 11:50 AM (8 years ago)

      Congrats on being almost two years from treatment and NED! I’m learning that only time alleviates the fear of recurrence. You’ll get there!

      Reply
  7. myra benson
    April 27, 2016 at 2:39 PM (8 years ago)

    MY PARTNER HAS JUST Had two weeks treatment as the lung cancer ad returned but positivity keeps him going you show great resilience you have to be positive else the cancer wins

    Reply
    • Stephanie
      May 17, 2016 at 9:59 AM (8 years ago)

      Praying and believing in a full recovery for your partner. Positivity wins everytime!

      Reply
  8. Leisha
    May 3, 2016 at 10:57 AM (8 years ago)

    Had my post treatment middle of the night pity party and then a come-to- Jesus meeting with myself. Still feeling very vulnerable this morning and then I saw your blog. Just starting to move past triple negative breast cancer and on to the rest of my life. Your words and the scripture move me to tears but not for sadness. Its for that someone else knows how I feel.

    Reply
    • Stephanie
      May 17, 2016 at 9:58 AM (8 years ago)

      Your words hit me in the center of my soul. Thank you for connecting. It’s in those middle of the night moments when we kind find our strength to push through. For me, a good cry helps tremendously. Good for you to address those emotions and continue to move forward. Also, a huge congratulations for recovering from triple negative bc! Amazing. I’m thankful that you have found understanding and familiarity in my words. Best wishes to you in your big, wide open future!

      Reply
  9. craig Brown
    May 3, 2016 at 12:57 PM (8 years ago)

    I stumbled on your site as i was trying to find a reasonable example of what 10 cm is equivalent to as I had a 10 cm mass in my stomach when my cancer was discovered last August. I too took to writing a blog about my experience as I went through chemo, surgery then more chemo. I have been blessed to have received the first (of many I hope) diagnosis’ of NED. You have a true gift to be able to express your feelings so eloquently. God bless you for the work you are doing and have done.

    I have stopped writing my blog as I want to put this chapter behind me and not keep dredging it up but i have it available at perryyoureadeadman.wordpress.com if you would like to check it out.

    Reply
    • Stephanie
      May 17, 2016 at 9:52 AM (8 years ago)

      Thank you for your kind words and congrats on your latest NED news! I’m believing you’ll continue receiving great news with each scan you receive. Keep pushing through, there’s so much more life to live! Writing is cathartic isn’t it? I’m sure it helped you understand your own grief and emotions throughout your battle. Best wishes to you in the future.

      Reply
  10. Shawna
    May 18, 2016 at 9:35 AM (8 years ago)

    Thank you for this encouraging post! I found you through your instagram posts about your hair growth. :) I have a scan next week to see if I’m still cancer free and I always feel a little anxious, but I love that verse you posted! What a comfort!

    Reply
    • Stephanie
      May 18, 2016 at 9:37 AM (8 years ago)

      You’re so welcome. Glad you found me! Standing with you in faith and believing that your next scan will be NED!

      Reply
  11. Jodi
    September 10, 2016 at 8:48 PM (8 years ago)

    I just had my first post-cancer scan. My ca-125 (ovarian cancer marker) was higher than normal (but lowest it’s been since diagnosis). My scan was Friday, I get the results Mon-Tue. I feel great, and better each day, but I am petrified. This blog summed up my feelings perfectly.

    Reply

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