Follow-Up Care of Desmoid tumors

Executive Summary

Follow-up care for desmoid tumors refers to the after-treatment protocols conducted by the healthcare team to look after recurrence, manage the side effects, and monitor the patients’ overall health. Both medical and physical examinations are included in the follow-up care of desmoid tumors. Watching the recurrence of desmoid tumor is seen in test reports of follow-up care. The symptoms due to the long term effects of radiation therapy are treated. The methods of follow-up treatment are often associated with chemo sessions, radiation therapies, and more. It is essential to have a follow-up care plan for desmoid tumors as the patient tends to think majorly about desmoid tumor symptoms and related to them. The doctor will propose checks and testing to check for late effects based on the patient’s desmoid tumor treatment symptoms.

Managing the side effects while receiving treatment is a critical follow-up care approach. Personalizing the follow-up care plan is essential for patients with desmoid conducted by the medical care team. Effective communication with the doctor regarding the long term effects of all the treatments will be effective in the future.

Follow-up Care for Desmoid Tumors

Desmoid tumor is a rare tumor condition. The disease is also called Aggressive fibromatosis. Since desmoid tumors arise in the connective tissues, they can affect any body part. These tumors are seen to grow slowly but can be malignant. Most Desmoid tumors are aggressive and can be a threat to life. It can affect essential organs of the body like the kidneys, intestine, blood vessels, nerves and lungs. Since the disease condition is severe, proper follow-up care post active treatment is essential to monitor the patient’s health condition.

Care for people detected with desmoid tumors doesn’t end with active treatment . The health care team will develop a post-treatment care strategy as per a patient’s disease condition, called follow-up care. Every disease survivor should have a proper follow-up care routine. Follow-up care refers to seeing the health care provider post-treatment for regular medical check-ups and screening to evaluate your post-treatment health progress and disease condition. 

The follow-up care will include routine physical examinations, various medical tests (blood tests, urine tests) and scans, to monitor a patient’s overall health status . These tests and scan results will help the doctor analyze and detect any variation in the patient’s well-being, any other complication, symptoms or signs indicating any disease or side effects due to the treatment. Follow-up care doesn’t just focus on addressing a patient’s physical health issues but also prioritizes their mental well-being. Desmoid tumor survivors should utilize the opportunity to address any emotional, mental concerns to their doctor or health care team. 

You can design a survivorship care plan along with your physician. A survivorship care plan will consist of a full, detailed summary of your treatment, along with a follow-up plan designed as per your health condition and requirements. This plan will function as a tracker to monitor your condition post-treatment. It will ensure that you get regular, competent care to prevent any chance of the disease condition recurring or any side effects of treatment becoming worse. Follow up care should not be missed, especially in the case of rare, malignant disorders like a desmoid tumor, as their behaviour cannot be predicted, and a possibility of this disorder recurring post successful treatment cannot be discarded. Doctors can check for recurrence or distant metastasis through these follow-up check-ups and help treat them.

In Follow-up care, the doctor may recommend rehabilitation. Rehabilitation includes various services such as therapies (physical and mental), pain management, career counselling, emotional counselling, diet and nutrition planning. The ultimate goal of rehab is to aid survivors to regain control over their lives and encourage them to be self-sufficient, active and productive as much as possible. Rehabilitative therapies and sessions help cope with, treat, and relieve these symptoms or side effects post successful cancer treatment. Follow-up care and rehabilitation collectively focus on improving the quality and comfort of the life of cancer survivors. 

In the case of patients who have received desmoid tumor treatment in their legs or arms, a rehabilitation programme, post-radiation therapy or surgical procedure can immensely help regain and maintain their joint and limb function. Physicians and therapists can also recommend strengthening exercises, range-of-motion exercises and other activities to reduce conditions like lymphedema. A rehabilitation medicine specialist can ensure that the patient gets the most appropriate and effective rehab services. In some rare cases, treatment may include amputations, and in such instances, patients should be guided to use artificial limbs or prosthetics. Providing sufficient mental support and encouragement is extremely vital in such situations.

Proper care and guidance should be provided for patients to cope with mental stress, anxiety, and depression post-treatment of desmoid tumors (or any disease in general). Today, most cancer care centers have support groups and services that offer survivors the support they require. These support services will have various therapies, counselling and other sessions to address the emotional concerns of the survivors.

The primary goal of follow-up care post successful treatment is to check for any possible recurrence. Since Desmoid tumors grow at a languid pace, and the symptoms may not be experienced until the case becomes aggressive, it is essential to have frequent medical check-ups. Desmoid tumors are seen to recur locally, and their growth pattern or behaviour cannot be predicted. A doctor who is familiar with your medical history will be able to guide you with personalized information regarding your risk of disease recurrence during follow-up check-ups.


The doctor may ask you different questions to evaluate your health condition. Depending on your disease condition’s type, stage, and gravity during the initial diagnosis and treatment, the doctor may prescribe various medical tests (blood/urine/imaging tests) and scans.

Survivors can get triggered by anxiety and stress while coming for follow-up check-ups and waiting for the test results. They will be constantly worried about cancer recurring again in the body. In such cases, survivors are encouraged to openly communicate their fears with their doctor, who will help them get the necessary support. 

Another important aspect of follow-up care is managing and relieving the side effects of treatment. People may experience many long-term and short-term side effects while receiving treatment for cancer. The late side effects or long-term side effects tend to last for a more extended period (even months or years) post-treatment. These side effects can affect the physical and mental well-being of a survivor.

Patients should talk with their doctor or health care team regarding the treatment they will receive as per their cancer condition and what side effects they should expect, well before the treatment begins. If any side effects are expected to cause troubles, proper treatment and care should be provided to manage and relieve them. 

People who have received treatment for desmoid tumours are urged to make healthy life choices. They are encouraged to follow established guidelines like eating a healthy balanced diet, maintaining healthy body weight, undergoing screening tests as and when required, not indulging in unhealthy practices like drinking, smoking etc. They are also encouraged to perform physical activities without straining their bodies. Talk with your doctor or healthcare team, and design a plan to keep up a healthy lifestyle.

Desmoid tumour survivors and the doctor should work together to design a personalised follow-up check-up and care plan. Survivors should make it a point to address or discuss any fears or concerns regarding their mental and physical health with their health care provider. Also, survivors should record all their treatments and medical history for future reference.  

Survivors can also enquire about who will lead their follow-up care to their doctor. Some people continue to see their oncologists or health care team, whereas others transition back to the supervision of another medical professional or their family doctor. Several factors like the type, grade, gravity of the disease condition, possible side effects, personal preferences etc., shape such decisions. 

If, in case, a medical professional who was not a part of your treatment lead your follow up care, be sure to share all relevant medical history and survivorship plan with them. This applies in the case of all future health care providers. This is very important, as it will help the new doctor plan your care based on your past medical details.