Travel for Desmoid fibromatosis

Desmoid fibromatosis or commonly known as Desmoid tumors are benign fibrous growths that is quite rare in the population of USA. The fibrous connective tissue forms tendons and ligaments, typically in the arms, legs or the midsection, and also in the head and neck to cause a tumor. Usually, a single tumor is formed in the affected person but sometimes it can be multiple too. These tumors are non-cancerous as they do not spread to the other parts of the body.

If you happen to travel for the treatment of Desmoid fibromatosis, you would have to carefully plan out your travel expenses and the itinerary. You have to decide for the treatment center and hotels to stay for the treatment of Desmoid fibromatosis. Be sure to take up the appointment in advance for the treatment of Desmoid fibromatosis, so that you do not face any trouble.

If you already know where you will be going for the treatment of Desmoid fibromatosis, or a consultation or a second opinion then click here to plan your travel. Otherwise, click here to get the information about facilities that specialize in Desmoid fibromatosis.

If you cannot afford travel for medical treatment, please consult our directory of charitable organizations that can help arrange no-cost transportation for you.

For more information: (links to the section below)

  • About Desmoid fibromatosis
  • Where to go for Desmoid fibromatosis?
  • Treatment of Desmoid fibromatosis
  • Risks associated with Desmoid fibromatosis
  • Who can go for the treatment

About Desmoid fibromatosis

A Desmoid fibromatosis is the tumor that arises from the connective tissue of a particular body part. These tissues are the ones that provide strength and flexibility to parts like bones, ligaments and muscles. This kind of tumor can transpire on any part of the body. Desmoid fibromatosis are scar like tissues which are non-inflammatory fibroblastic tumors.

Even though these can be non-cancerous tumors but a Desmoid fibromatosis can aggressively spread to its surrounding tissue and can cause difficulty in removing it surgically. These tumors can come back even after the surgery. Desmoids tumor majorly affects the tissue that is elastic and easily moved. The tumor may exist for a long time before actually being discovered while it is growing large, pushing aside surrounding tissue.

The word, ‘Desmoid’ was taken up from Greek word, ‘Desmos’ that means tendon or bend like and was coined by Muller in 1838. It is known as an aggressive tumor as it has similarities with the cancerous tumor called fibrosarcoma. The difference between Desmoid tumor and other types of tumors is that it generates in the fibrous tissue and other fatty tumors tend to occur right under the skin.

Where to go for Desmoid fibromatosis?

In USA there are various facilities that can offer treatment for Desmoid fibromatosis, if you have already determined your child’s symptoms from early stages. As there are more precautions and management rather than the treatment, quite many hospitals cater to the treatment of Desmoid fibromatosis.

The following health care facilities would help you largely deal with the diagnosis and treatment of the syndrome:

  • Coming Soon

If you are diagnosed with Desmoid fibromatosis and if your insurance policy allows you, travel to a hospital with a professional staff in sarcoma. These hospitals are generally designated as National Comprehensive Cancer Network (NCCN). However, not all hospitals with NCCN accreditation are experts in sarcoma. Prior to making an appointment, just check up with the facts from the health care facility itself. Superlatively, patients with Desmoid tumor should be treated with a multi-faceted hospital which has experts like, surgeons, medical oncologists, radiation oncologists, geneticists and nurses.

Researchers claim that the exact cause of Desmoid fibromatosis is still unknown. The most prominent diagnosis for Desmoid fibromatosis is biopsy where the sample of the tumor is taken through a surgical procedure. Along with biopsy, electron microscopy can be taken up to get clarity for the further treatment of Desmoid fibromatosis.

Additionally, immunohistochemical stains is also an option for looking up for the nuclear accumulation of beta-catenin. Beta-catenin is a protein that is affected by the genetic mutation that is commonly found in Desmoid fibromatosis. Nuclear reactivity displays a comparatively higher specificity that is usually detected in about 90% tumors in spite of the position of Desmoid fibromatosis.

To distinguish Desmoid tumor from other kinds of tumors, antibodies are checked up like smooth muscle actin, desmin and KIT. Ultrasound can be helpful in creating of the images through high frequency sound waves to check if the tumor is solid.

Imaging Scans like MRI could be helpful to know whether the tumor is attached to other tissues and can be safely removed through surgery. X-rays from different angles are even more supportive to get a complete picture.

Treatment for Desmoid Fibromatosis

As Desmoid tumor tends to affect different people in varied consequences, there are a lot of treatment options that a person can opt to take up.

  • Because of its non-cancerous characteristic, surgery is the most optimal option to go for. There is a 50% chance that the tumor would reoccur, so in most of the cases more than one surgery is needed to completely cure Desmoid tumor. However, the tumor is more regressive once it has resurfaced.
  • Radiation therapy is also an option for the treatment of Desmoid fibromatosis. To avoid the mutilating surgical option, the recurring tumor can be treated through high energy rays from a specialized machine to damage or kill the cancer or tumor cells. There are two options for radiation therapy, conventional linear accelerators (radiotherapy treatment machines) or proton beam therapy. The choice depends upon an individual’s characteristics of Desmoid fibromatosis.
  • Non- Inflammatory medication is usually given to the patients of Desmoid fibromatosis to help with the pain and swelling. In a few of the cases, these medications assist the tumor to shrink up. There are two kinds of drugs that the physicians prefer for a patient of Desmoid fibromatosis, non-steroidal anti-inflammatory drugs (NSAIDs) and drugs like Imatinib.
  • Hormone Therapy is also provided to some of the patients of Desmoid fibromatosis. In the pharmacologic therapy, anti-hormonal medications like anti-estrogens and prostaglandin inhibitors are given to the patients of Desmoid fibromatosis for the purpose of stopping the growth of Desmoid tumors.

Risks associated with Desmoid fibromatosis

Recurrence of an irritation or a trauma to a certain part of the body, also surgical trauma can increase the risk of Desmoid tumor. Many researchers have been researching for new therapies to help in the diagnosis of Desmoid tumor. Soon mutation analysis would be available to predict the risk of resurfacing of Desmoid tumor.

Patients already suffering from Familial Adenomatous Polyposis (FAP) are at a higher risk of developing Desmoid fibromatosis. The combination of both is known as Gardener’s Syndrome. The Desmoid tumor once if treated through surgery has a higher risk of returning back. Before going to travel for the treatment of Desmoid fibromatosis, one needs to be open to their surgeon about the risk of recurrence. Because of this high a risk, surgery is falling out of option for many people.

Who can go for the treatment?

In USA alone, 900 people are diagnosed with Desmoid fibromatosis every year. In a million people, 2-4 of them are diagnosed with this tumor. According to the experts, this number has a probability to increase as there is difficulty in suitably diagnosing the ailment. That is why, there no accurate statistics about the number of people who are diagnosed with Desmoid fibromatosis.

Individuals between the age group of 15 to 60 are the most affected ones; however Desmoid fibromatosis can occur in anyone. The average of people suffering from Desmoid tumor is 30’s to 40’s. The tumor has a tendency to be prominent among women than men with a ratio of 2:1.

Symptoms of Desmoid fibromatosis depends where the tumor is located in the body. If it is located near skin, one might feel a slightly painful or a painless lump. However, the most common symptom of Desmoid fibromatosis is pain. The signs and symptoms of desmoids Tumor differ according to the size, location and spread of the tumor. So, every person struggling with Desmoid fibromatosis would have different symptoms, but the most common ones are below:

  • A painless swelling or lump
  • Pain caused by compressed nerves or muscles
  • Pain and obstruction of the bowels
  • Limping or difficulty using joints such as arms and legs