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Fear of Cancer Recurrence Syndrome

Fear of Cancer Recurrence Syndrome

May 27, 2015 by Liz

Since lung cancer surgery 3 years ago I have met many people who have a multitude of varying questions on what is happening in their lives when they have been diagnosed or had cancer surgery or treatment.  The fear of returning cancer affects a very high number of cancer survivors, some experiencing post-traumatic stress disorder. Many questions deal with the fear of returning or metastasized cancer and I am hoping my experience might be of benefit to others whatever challenges you are facing.

Somewhere the sun is shining, When your journey is shared with a friend
“Happiness is anyone and anything that’s loved by you” ~ Charles M. Schulz

Cancer Recurrence Possibility

Having just passed the 3 year anniversary of lung cancer surgery with the usual CT scan and associated appointment, writing this article brought back memories. The fear of a new primary cancer, a metastasized cancer, waiting for results from scans, x-rays, biopsies and diagnosis, all can play havoc on a cancer patient / survivors mind. I was curious how common this was and from my research it is obvious it is a very real topic for at least 50% (or higher) of women who have had cancer surgery and treatment.

Here are some random comments from blog postings mostly from women with cancer or cancer survivors:

  • Can’t imagine what could have caused these new nodules so once again driving myself mad with worry
  • Having a CT scan tomorrow and am terrified what it will turn up
  • I have until recently been having regular CT scans but due to the amount of radiation they’ve pumped into me over the past 2 years they have decided to stop the scans for the moment and just give me yearly ones
  • I have my very first session booked for Friday so am very nervous and just don’t know what to expect
  • … have been terrified, as I thought cancer was racing around my body
  • I too was told that the CT usually shows up all manner of little blips, cysts and nodules that are of absolutely no concern
  • … any advice how to stay calm and cope would be appreciated
  • The CT showed up multiple indeterminate nodules I was terrified
  • I too showed up with nodules on my lung. I was horrified at this as like you had never smoked. My oncologist I felt handled this dreadfully, I was so upset and he just dismissed it and said that my immediate concern should be focussing on my up and coming chemo. He upset me so much I asked for a different oncologist 
  • I feel that I have to trust them if they say it’s clear, then it is, but when you’ve already had cancer diagnosis you cannot help but worry

Most cancer patients / survivors can empathize with one, some or all of these comments at one time or another.

Cancer Recurrence – what you can do

What’s practical when dealing with the fear of recurrent cancer:

One of the most practical changes in an ideal world, would be that the wait times for tests and test results be shortened as well as to shorten surgery waiting times for all, but especially for critically ill patients. Surgical waiting times Canada-wide are getting longer. Write, petition or call your local MP to let them know your concerns and ask for similar (to the following) or new programs where you live and vote accordingly

An important program that deals with this locally is the Breast Cancer Clinic at Jim Pattison Outpatient Care. After a mammogram and a short wait most patients receive results the same day. Relief is obvious especially for those with ongoing concerns knowing that they do not have to wait another 4 to 6 weeks for results before referral, treatment, or surgery

The second very positive program is the Rapid Autopilot Program (RAP) for lung cancer which I benefitted from as a patient – the lung cancer was diagnosed in minimum time and surgery followed shortly afterwards, relative to normal waiting times for this often aggressive cancer.

Sometimes it seems there is one stressful event after another and this can create anxiety. If at all possible schedule your appointments with enough time in between to recover and make appointments at your best time of day i.e. the morning. Have a friend or member of your family drive you to your appointments as it is great moral support.

Simplify Simplify Simplify
Simplify Simplify Simplify

Reassurance & Support for Cancer Survivors & Warriors

  • Have a friend you can tell “all” to, someone who will listen to what you have to say, who will love and care for you “no matter what” – so comforting to have a shoulder to cry on and a helping hand to support you when needed
  • It is imperative you ask your surgeon, oncologist, radiologist if you have questions or do not understand a procedure
  • While undergoing treatment many cancer agencies offer free counselling and other support to their patients
  • Faith can give joy in times of sickness and anxiety as well as strength and peace
  • Hope is a very positive attribute – don’t give up
  • Keep asking questions

What else you can do :

  1. Deal with the urgent and imminent – and do not concern yourself with “dark imaginings” (I know it’s easy to say)
  2. Fill your time with what you are able and like to do and with people you love and can laugh with
Watching my garden grow with grandchildren ~ a great big positive
Watching my garden grow with grandchildren ~ a great big positive

Health – Be the best you can be!

  • Stop smoking
  • Eat a healthy diet with balanced nutritional content, no fast food.
  • Exercise (such as swimming) and lose a little weight
  • Keep learning about your health and keep notes on your appointments
  • Follow suggestions and recommendations from your medical support team such as stop drinking caffeine, reduce alcohol consumption
  • If you are having trouble sleeping, or nightmares let your doctor know
  • Remind yourself there are no rights or wrongs with cancer
  • Learn something new and adopt whatever activities help you to cope better
Swim or walk - a good form of exercise to help reduce cancer recurrence
Swim or walk – a good form of exercise

These ideas have worked for me in the past. As always there is no “one size fits all” when it comes to cancer. We share the same experiences with many others who also have similar questions on loss of control, negative feelings and side effects of cancer and its treatment. Follow up appointments even when stable or new symptoms can all trigger this fear. Often, over time this fear usually decreases. Whatever your trials you are going through at this time I hope you have found a resource to help you in this article. Cancer is a life altering disease but there is much to enjoy and be thankful for now.

Life is not about waiting for the storm to passLinks & References

  • There is lots of support in different languages – American Cancer Society
  • Wait times for priority procedures 2014 in Canada
  • Wait times for medical procedures, tests and treatment 18 to 39 weeks – Fraser Institute
  • More good advice from the Cancer Research UK
  • Post Traumatic Stress and cancer
  • An explanation and understanding of counselling – Cancercare
  • Fatigue and tiredness from Cancer
  • Nerve pain from cancer surgery, radiation or chemotherapy can be long term
  • The journey of tissue biopsy for cancer testing
  • Some common questions about cancer  that do have an answer

 When it comes to cancer, not all questions have an answer . . . or any answer at all.
Such as the question “Why?“

 

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About Liz Gardner

Live in Canada's Pacific Northwest. Dual nationality & personality. Happy gardener all my life. Love my grandkids & our West Coast beaches. Passionate about all things "healthy". Life long learner & asker of "how". Encourager - we all need a little help sometimes. And a sense of humour. Every day is a gift. Read More…

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