Survivorship begins immediately after the diagnosis of childhood craniopharyngioma. The children under treatment and whose disease conditions are cured after the treatment are referred to as the cancer survivors. Survival is considered one of the most challenging aspects of childhood craniopharyngioma, as every child has unique conditions as per the disease’s severity. The survivors have experience emotions of concern, relief, remorse, and terror during their cancer journey. Survivorship of Craniopharyngioma involves three phases acute survivorship begins at the diagnostic stage and goes through until the initial set of treatments, extended survivorship that starts at the end of the initial treatment phase and goes through the months following, permanent survivorship that refers to a permanent condition where it’s been years since treatment has ended, and there is significantly less or no chance of the tumor recurring back in the body.
Craniopharyngioma survivors and their caretakers can feel stressed once the frequent visits to the hospital and meetings with the health care team end. They will begin to experience a lack of security or support, as the relationship built with the health care team provides them with a sense of support, comfort and protection. Patients and their families may experience powerful emotions after the treatment, including excitement, concern, relief, guilt, and dread. Coping with such emotional distress has been known to be the primary goal of survivorship. Recognizing the difficulties that your family is experiencing, solution-oriented thinking, requesting and accepting help from others, and feeling at ease with the course of action that the family takes are some of the most common coping effective necessitates. The treatment survivorship serves as a solid motivation to initiate healthy changes in lifestyle and maintain good health and live a cancer-free life.
Survivorship in Childhood Craniopharyngioma
The meaning and perception of “survivorship” can vary from one individual to another. It can mean having no signs or symptoms of cancer or tumor post-treatment. Or it can tell, “living with, through and beyond tumor”. Survivorship of Craniopharyngioma begins right after the disease is diagnosed. People who have been taking treatments and whose disease condition has been cured post-treatment are also considered survivors 1.
Generally, survivorship of Craniopharyngioma has got three phases:
- Acute survivorship begins at the diagnostic stage and goes through until the initial set of treatments. Here the focus is on treating the tumor by using suitable strategies.
- Extended survivorship begins at the end of the initial treatment phase and goes through the months following. The prime focus is on the effects of the tumor and its treatment.
- Permanent survivorship refers to a permanent condition where it’s been years since treatment has ended, and there is significantly less or no chance of the tumor recurring back in the body. The focus is on the long-term side effects of the treatments. Follow up care is essential in this phase.
Survivorship of Craniopharyngioma is one of the most complex parts of having craniopharyngioma, a rare brain tumor. This is because survivorship for the disease condition varies from one individual to another. In the case of childhood craniopharyngioma, some children whose tumor condition is likely to become chronic continue to receive treatment and care for an extended time. This is also to manage and reduce the risk of cancer recurring again in the body.
Cancer or tumour Survivors can experience a mix of emotions. They may portray strong feelings like relief, joy, fear, concern, or guilt. Many cancer survivors say that they have learned to appreciate life more and accept themselves for whatever they are after being diagnosed with the disease. At the same time, some others have become more tense and anxious about their health and seem uncertain about what lies ahead. These people may lose interest in their life, and find no meaning in living. They are mostly apprehensive of a bright future.
Craniopharyngioma survivors and their caretakers can feel stressed once the frequent visits to the hospital and meeting the health care team ends. They will begin to experience a lack of security or support, as the relationship built with the health care team provides them with a sense of support, comfort and protection 2. This may be triggered even more if any new worries or challenges like any side effects of the treatment, emotional challenges like the fear of recurrence, metastasis, sexual well-being, fertility concerns, financial and professional issues have started to bother the survivor.
The concerns and challenges every survivor may experience will be different. The prime step to overcome any hurdle or challenge is to recognise the fears and speak out about them. Parents and caretakers are encouraged to talk with the affected child and understand their feelings openly. To effectively cope and outshine any challenges, it is vital to:
- Understand the challenge the child/ adult and their family are facing
- Attempt to think and find solutions
- Asking for and allowing others to support and help.
- Feeling comfortable and confident with the course of action that your family chooses or initiates.
Many craniopharyngioma survivors say that joining a support group or an online community of survivors has helped them come to terms and confidently cope with their situations. Support groups or survivor communities allow survivors to interact with people from different walks of life who have had similar first-hand experiences with cancer. To find such groups or match support options, patients or parents (if the patient is a child) can talk with a friend, approach their health care team or a counsellor or ask for assistance at the learning resource Centre of the hospital or clinic where the patient received the treatment 3.
Role of Caregivers
A caregiver or a loved one who takes care of a child with craniopharyngioma (or any disease condition) is often called a “Co-survivor”. Caregivers play a pivotal role in treatment and cure. The family and friends, just like the patient, undergoes a lot of changes during the cancer treatment and survivorship journey. A caregiver’s role in providing emotional, mental, physical and practical care and daily support is beyond explanation. They accompany the patient throughout their treatment and recovery period, which may sometimes last for months or years after active treatment.
But as the active treatment comes to an end, the role of caregivers may also change. Sometimes, the patient may need significantly less or no care after successful treatment. In such a case, caregivers can slowly try to cope with their surroundings and learn to carry on with their daily life.
Not just caregivers, changes can happen with almost all relationships. During survivorship of craniopharyngioma, family members of the survivors can become overprotective. Or sometimes they tend to care very little or no more after cancer treatment. In the case of friends, some may become closer, whereas some others will keep a distance. So as a survivor or their parent or guardian, the best you can do is understand that most people connected with the affected person might change because of the cancer experience they have been through in ways they may not be aware of. Work through these changes, vocalize your needs, and get the desired support.
Follow Up Care for Survivors
Survivorship of Craniopharyngioma can serve as a solid motivation to initiate healthy changes in lifestyle. Children affected with craniopharyngioma must follow established guidelines to maintain good health and live a tumor-free life. The procedures include no smoking, limited alcohol intake, eating healthy and managing stress and anxiety. Children are also encouraged to regularly perform physical activities, which can help them regain their energy level and strength, but under adult supervision. Parents or guardians can seek the help of your child’s healthcare team to design an exercise plan as per your child’s needs, physical capabilities, fitness level and health condition.
Follow up care is pivotal in cancer treatment and cure. Caretakers must communicate with their doctor or health care team regarding creating a survivorship care plan that best suits their child’s abilities and needs.
- 1.Crom D, Smith D, Xiong Z, et al. Health status in long-term survivors of pediatric craniopharyngiomas. J Neurosci Nurs. 2010;42(6):323-328; quiz 329-330. doi:10.1097/jnn.0b013e3181f8a59d
- 2.Sands SA, Milner JS, Goldberg J, et al. Quality of life and behavioral follow-up study of pediatric survivors of craniopharyngioma. Journal of Neurosurgery: Pediatrics. Published online October 2005:302-311. doi:10.3171/ped.2005.103.4.0302
- 3.Yano S, Kudo M, Hide T, et al. Quality of Life and Clinical Features of Long-Term Survivors Surgically Treated for Pediatric Craniopharyngioma. World Neurosurgery. Published online January 2016:153-162. doi:10.1016/j.wneu.2015.08.059