Fear of Recurrence – Lessons along the way

The biggest fear after discovering you have cancer is then worrying it will return.    The fear of recurrence begins during treatment and never ends.  It takes managing your fears to keep it to a tolerable level.   For the next four blog posts, I am going to focus on dealing with fear of recurrence including ways to prevent recurrence.

My neighbor, Lisa, is a 12 year survivor of Stage IV Lymphoma.  She was not expected to live.  The doctors threw every treatment at her because she was only in her 30s with three school-age children.  It worked and all three kids are now in college!  However, 12 years later she told me never more than a few hours go by that the fear of recurrence doesn’t enter her thoughts.  The advice she gave me is “Do the best you can to control them.”

Here are things that help me.  And remember, it is like playing that arcade game, Whack-a-Mole.  There is always a new fear that will arise.  Keep beating them!

whack-a-mole

1)  It is unbelievable how many aches and pains we have just because of aging, medications like Tamoxifen or Aromatase Inhibitors and life circumstances.  When my first fears of recurrence began, I would call it “organ of the week” because each and every week something new was hurting.  Good advice was given to me at the beginning of my Survivor journey from another Survivor:  wait 6 weeks before you do anything.  NOW I SAY THIS WITH CAUTION…  the 6 week plan does not work for everyone.  Obviously, if I was having some serious symptom, I would call my Oncologist or physician immediately.

I am talking about mostly muscular pains from aging and the drugs!  Some days I have severe pain from the Arimidex that it is difficult to get out of bed.  Some days I do not.   For me, the 6 week plan has been invaluable advice to me because it calms me down.  BUT THAT MIGHT NOW WORK FOR YOU!   I am not giving medical advice, simply suggestng that you have a plan that you put in place and speak openly to your Oncologist about it.

All of my symptoms have gone away, usually within a week or two.  I kept having pain in the rib area under the breast that was removed.  Rib pain can be common from radiation.  But this was more intense.  I was terrified. Finally it dawned on me that I had started getting out of bed in a new way, throwing my arm over my head and pushing off the headboard, because of my Lymphedema arm.  Well, as soon as I readjusted and found a better way to get out of bed, the pain went away and has stayed gone.

Before you panic about some new ailment, really think about what you have done, what it could be from or what you may have done to cause the pain.   Things that would never have bothered you in the past, are now huge deals!!   And DEFINITELY call your Oncologist or physician immediately if you have some serious symptom.

2)  Learn to try to discipline the thoughts that come into your brain many times a day.  When fear grips me, I try to step back and say, “Oh hello fear of recurrence thought.  There you are again.  But you know what?  You are not going to ruin my day.”    Learning to talk to the fear like a spoiled child gives me more control.

3)  Ask your God to give you encouragement.  This has helped me so many times.  Last week I prayed the prayer that I needed encouragement.  Later that day,  I was sitting in my living room and the thought came to me that I should run over to my local beauty school and get a pedicure.   I called and was told to come right over.

After I sat in the pedicure chair, the student asked me about my arm because I wear a Lymphedema sleeve.  I told her I was a breast cancer survivor.  Another student was walking by the chair and heard those words.  She immediately stopped.   This gal was in her 40s.  She proceeded to tell me she was a 10 year breast cancer survivor –  Stage 3, Triple Positive – MY EXACT DIAGNOSIS!  She was on a clinical trial back 10 years ago and had the same drugs I had taken for treatment.   She said that she always wanted to go to beauty school, but breast cancer got in the way.  Delaying it because she thought she would die or have a recurrence, finally at the 10 year survival point, she decided it was now or never!   What words of encouragement our spontaneous meeting brought to me!

4)  Do things that make you think you can keep cancer recurrence from happening.   In my future posts, I will tell you about things that I do – like supplements and nutrition.  I told my Oncologist even if these things do nothing, the placebo effect for me is huge.  He agreed.

If you have hints or advice for others about things you do to manage recurrence fears, please post and let us know!   And do look for my next posts to help give you more tools!    Be sure to visit my Online Breast Cancer Store at www.hellocourage.com     Thanks!     Denise

Advertisements

8 thoughts on “Fear of Recurrence – Lessons along the way

  1. Yes the fear of it coming back…. Should I go to the doctor with this ache or pain??? After nearly 12 years I still feel this and it will probably never go away totally.. I don’t worry till I get an ache or a pain or some odd thing but then it causes great anxiety… As you say give it a couple of weeks and most aches have gone… I guess it is because when you get diagnosed with cancer the symptoms are not always obvious so one does not want to miss it if it came back … Helen

  2. This really hit home with me Denise! I was just talking about it with some friends last night. I have my first mammogram-6 months out from radiation-next week. It’s been 9 months since my diagnosis. All of the anxiety from that appt. comes flooding back into my mind. We need to take more images…..Can you come back this afternoon for a biopsy?…I didn’t have to wait for the doctor to call wih results, I knew I had breast cancer. There are days when I wish I had gone the Angelina Jolie route and just had them both removed. Some days I’m my own worst enemy!

  3. After reading your last entry, I asked my doctor about your advice about waiting 6 weeks to do anything if you had a new pain. She disagreed. While I understand what you were saying about not wanting to be a hypochondriac about new pains but it seems to me that if you have a medical team available to you, asking the question never hurts. Sometimes even waiting a day is too long for some things, especially if you have a pain in your leg and it could be a blood clot.

    • Brenda, you are absolutely right. The 6 week plan works for me. It would not work for everyone, and I am glad it caused you to ask your doctor the question. It is good to have a plan.
      Usually the pains for me are from the Aromatase Inhibitor drug, Arimidex (generic: Anastrozole).
      And since I am 57 years old and have horrible pain from the AI drugs, honestly, I would be calling my Oncologist daily if I called him about every ache or pain.
      Obviously, if it was something more severe, I would not wait 6 weeks. I will revise my post. I appreciate your bringing it to my attention.
      Plus, once again, I am really glad that you spoke with your doctor about this!

  4. Thank you, Denise for your blog. It’s very helpful. I am interested in the supplements you take and look forward to reading on your blog. I’m in the middle of treatment currently – just finished neoadjuvant chemo and have surgery next week.

    Best,
    KJ

    • KJ – thanks so much! I am writing those future blog posts now!
      Congratulations on finishing chemo! What a HUGE accomplishment!
      Now surgery – I hope it goes well and that you have a fast recovery.
      You are doing it and making us all proud! Denise

  5. Thank you for sharing. I am a month out from radiation and 3 months out from chemotherapy and am having big time issues with the fear of recurrence.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s