Childhood Cancer Survivorship

Getting cancer is something NOBODY wants, and it is even more tragic when a young soul is diagnosed with cancer. Fighting cancer is a battle that leaves many scars, not all of them physical…

Those who have survived cancer are often left with a different appreciation of life, even children who have not yet lived much of theirs.

Survivors can also, however, become very anxious about their health; about whether the cancer will return; about the visits to the doctor for the next how many ever years, and then when the regular visits stop.

Another problem is that unless you have had cancer or have cared for someone who has survived cancer, there is NO WAY you can understand what a cancer Survivor goes through for the rest of their life! Most people seem to think that having cancer is a temporary situation and that once you are through the treatments it means that you are cured and life should just continue as per normal – this is FAR from the truth!

Cancer is in effect a revolving door, and at any moment a scan could land a Survivor right back in the territory of Active Cancer Treatment


Defining Survivorship

Surviving cancer or “survivorship” generally has two common definitions:

  • Having no disease after the completion of treatment;
  • The process of living with, through, and beyond cancer. By this definition, Cancer Survivorship begins at diagnosis and includes individuals who continue to undergo treatment to either reduce the risk of recurrence or to manage chronic disease.

Sometimes various terms are used to describe the specific period a survivor is experiencing:

  • Acute Survivorship: describes the time when a person is diagnosed and/or in treatment for cancer;
  • Extended Survivorship: describes the time immediately after completed treatment, usually measured in months ; and
  • Permanent Survivorship: describes the longer passage of time since completed treatment, usually measured in years.

Sometimes close friends and families of those who have survived cancer (especially Childhood Cancer) are considered to be “co-survivors” because of the experiences they have had in caring for the person with cancer.

Some individuals with metastatic cancer don’t feel that the “survivor” label applies to them because they continue to live with cancer every day. No matter the definition, survivorship is unique for each person.


Surviving Cancer: What to Expect

Many survivors often have mixed emotions at the end of their active cancer treatment – this can include relief that the treatment is over as well as anxiety about the future.  In some ways, this transition is one of the least understood aspects of the cancer experience.

Once the “safety net” of regular, frequent contact with the health care team ends, some survivors may feel a bit lost without the support and anxieties about the future may surface at this time.

Some survivors will be plagued by physical, psychological or behavioural problems while others may feel guilty about surviving while friends (sometimes those made in the hospital) did not survive. This can be very confusing for children and they may ask why their friend died and they lived – especially if it was another child that had the same type of cancer and received the same type of treatment. This may also increase their fear and anxiety about the cancer returning and them not being able to fight it off again.

Some survivors may also suffer from poor body image or low self-esteem because of the treatments they received; they often need help to learn to accept their new body and on how to deal with other people’s comments, especially Childhood Cancer Survivors.


Fear of Recurrence

Fear of the cancer coming back after treatment ends is very real and very common and may lead to the survivor constantly worrying about common physical problems, such as a headaches, coughs, and joint stiffness (or their parents becoming very over-protective).

It is hard to know what is “normal” and what you should tell the doctor, but discussing the actual risk of recurrence with your child’s doctor and the symptoms to report ahead of time can often lower anxiety levels markedly.

Maintaining a regular schedule of follow-up visits can also provide a sense of control although most cancer survivors report feeling very scared and about routine follow-up visits and tests – hopefully these feelings will ease over time.



Once active treatment is over, things can change in a myriad of ways, and this can make different relationships very hard to deal with:

  • Some survivors still need support, although it may be support of a different kind than they had before;
  • Some friends may become closer, while others distance themselves;
  • Families can become overprotective or may have exhausted their ability to be supportive;


Long-Term Side Effects

Some physical and psychological changes such as fatigue, lack of stamina, difficulty focusing, changes in skin texture, or neuropathic (nerve) changes in fingers and toes, do not magically disappear with the final treatment and seem to last for months or even years after treatment ends.

There can also be other long-term side-effects such as some medications that may affect his or her bone density – there needs to be a plan in place as to how this will be monitored once regular check-up visits end, as well as any available treatments.

Another possible side-effect is the onset of lymphedema [swelling (usually in the legs) caused by lymph accumulating in the tissues in the affected areas], which can often appear only years after treatment and can be very painful and crippling.

It is important that you discuss any concerns about the future during the last few visits with your child’s doctor or treatment team. It is important that you have all the relevant information regarding the treatment given, the prognosis, possible late complications or side effects, and the follow-up care schedule. This should all be encapsulated in an “end of treatment summary.”

A life may be forever changed by the experience of having cancer, and those changes deserve careful attention and respect. We all need to recognise that many individuals live with cancer and an uncertain future.


The unique challenge facing Survivors is that while the fear of recurrence is real and normal, they need to get on with living, celebrate the joys of the present, and hopefully recognise when they need help and ask for it.



About LFCT

This is a blog about CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 15 March, 2017, in Advice & Tips, Blog and tagged , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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