Survivorship begins immediately after the diagnosis of desmoid tumors. The patients 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 desmoid tumors, as every patient 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 desmoid tumors 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. Desmoid tumor 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 Desmoid Tumor
The meaning and perception of “survivorship” can vary from one person 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 cancer”. Survivorship of desmoid tumors 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.
Generally, survivorship 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 desmoid tumor is one of the most complex parts of having desmoid tumors. This is because survivorship for the disease condition varies from one person to another. Some people 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 1.
Desmoid 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 leaving. They are mostly apprehensive of a bright future.
Survivorship of desmoid tumors can feel stressed once their 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. 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 recognize your fears and speak out about them. To effectively cope and outshine any challenges, one needs to:
- Understand the challenge they 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 one chooses or initiates.
Many desmoid tumor 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 2. To find such groups or match support options, patients 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.
Role of Caregivers
A caregiver or a loved one who takes care of a dear one with a desmoid tumor (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 desmoid tumor survivorship, 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, the best you can do is to understand that most people connected with you 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 desmoid tumor can serve as a solid motivation to initiate healthy changes in lifestyle. Desmoid tumor survivors are bound to follow some 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. People who have desmoid tumors are also encouraged to regularly perform physical activities, which can help them regain their energy level and strength. Seek the help of your healthcare team to design an exercise plan as per your needs, physical capabilities, fitness level and health condition.
Follow up care is pivotal in cancer treatment and cure. Communicate with your doctor or health care team regarding creating a survivorship care plan that best suits your abilities and needs 3.
- 1.Ballo MT, Zagars GK, Pollack A, Pisters PWT, Pollock RA. Desmoid Tumor: Prognostic Factors and Outcome After Surgery, Radiation Therapy, or Combined Surgery and Radiation Therapy. JCO. Published online January 1999:158-158. doi:10.1200/jco.19184.108.40.206
- 2.Schut ARW, Timbergen MJM, Lidington E, et al. The Evaluation of Health-Related Quality of Life Issues Experienced by Patients with Desmoid-Type Fibromatosis (The QUALIFIED Study)—A Protocol for an International Cohort Study. Cancers. Published online June 22, 2021:3068. doi:10.3390/cancers13133068
- 3.Sawada T, Mizumoto M, Oshiro Y, et al. Long-term follow up of a patient with a recurrent desmoid tumor that was successfully treated with proton beam therapy: A case report and literature review. Clinical and Translational Radiation Oncology. Published online March 2021:32-35. doi:10.1016/j.ctro.2020.12.004