Desmoid tumor (patient information): Difference between revisions

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Differentiating Desmoid tumor from other Diseases
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History and Symptoms
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Latest revision as of 20:12, 5 March 2019

Editor-In-Chief: C. Michael Gibson, M.S., M.D. [1] Associate Editor(s)-in-Chief: Sara Mohsin, M.D.[2]

Overview

Desmoid tumor commonly develops by division of myofibroblast cells in the fibrous (connective) tissue of the body that forms tendons and ligaments, usually in the arms, legs, abdomen, head and neck or any part of the body. These tissues of the body connect, support, and surround other body parts and organs.

What is desmoid tumor?

Desmoid tumors grow from the connective tissue in your body
They grow from fibroblast cells, which make up connective tissue and are also important for wound healing
Connective tissue supports and connects your bones, ligaments, and muscles, and helps hold your organs in place
Desmoid tumors are also known as aggressive fibromatosis or desmoid-type fibromatosis
A desmoid tumor can occur anywhere in the body since connective tissue is found everywhere in your body
Desmoid tumors are often found in the abdomen
They can also be found in the shoulders, upper arms, and thighs
Desmoid tumors are benign, which means they are not cancer
While the cells of the desmoid tumor do not travel to parts the body like cancer can, they can invade nearby tissue and are often very painful
Desmoid tumors can grow slowly or very quickly
The quicker they grow the more serious they are
Desmoid tumors can be difficult to completely remove with surgery
Desmoid tumors are most common in people between the ages of 15 and 60 years
They are more common in females than males

How common is desmoid tumor?

Out of one million people worldwide, two to four are diagnosed with a desmoid tumor per year

How is desmoid tumor diagnosed?

Some people with desmoid tumors have symptoms, but others don’t
Symptoms can include:
- Pain
- Swelling in the area of the tumor
- Sleep loss
Difficulty moving
For people without symptoms, these tumors can be discovered if the person has an imaging test for another reason

Imaging

If you have symptoms of a desmoid tumor, your doctor may use imaging scans such as CT, MRI, or ultrasound to see where the tumor is and how big it is

Biopsy

To check if the tumor is a desmoid tumor your doctor will do a biopsy, taking a small amount of the tumor out with a needle
An expert, called a pathologist, will study the cells under the microscope to see what kind of tumor it is
Depending on where the tumor is in the body, it may be difficult for the doctor to take a biopsy

How is desmoid tumor treated?

Treatment for each patient will be unique
You should go to an expert in sarcoma treatment to decide the best approach for your tumor
You can contact MyPART for help finding experts near you
Desmoid tumors can be hard to predict
They can shrink and go away on their own, they can remain the same size, or they can grow quickly
Treatment options to discuss with your doctor include:
- Watch and wait
  - In some cases, the tumor grows very slowly, or even shrinks without any treatment
  - In this case it may be safest for your doctor to check your tumor regularly without treating it
- Surgery
  - Surgery has been a standard treatment for desmoid tumors in the past, but this may be changing
  - Because the tumor often returns to the same location after surgery, doctors are looking for other treatment options
- Radiation therapy
  - Radiation therapy is a treatment option for some desmoid tumors
  - Because radiation therapy can cause other cancers in the future, it is important to discuss with your doctor
- Chemotherapy
  - There is no standard chemotherapy for desmoid tumors
  - But, promising new drugs have been shown to shrink these tumors
It is important to discuss these different options with your doctor and seek second opinions if possible

Do desmoid tumors run in families?

In 5% to 10% of cases, desmoid tumors may run in families
Gardner syndrome is a rare syndrome that runs in families
People with this syndrome have a high risk of colorectal cancer and desmoid tumor

How does desmoid tumor form?

Scientists are always working to understand how tumors form, but it can be hard to prove
We know that some people with a family history of desmoid tumors have a change in a gene called adenomatous polyposis coli, or APC
This change causes too much of a protein called beta-catenin in parts of your cells
Too much beta-catenin can cause cells to grow when they shouldn’t
In some desmoid tumors, there is too much beta-catenin, even though APC is normal
APC and beta-catenin are important in many common cancers, such as colon cancer, and scientists are trying to use this information to develop better cancer treatments, which will help people with desmoid tumors

What is the prognosis for someone with a desmoid tumor?

The estimate of how a disease will affect you long-term is called prognosis
Every person is different and prognosis will depend on many factors, such as:
- Where the tumor is in your body
- How fast the tumor grows
- How much of the tumor was taken out during surgery
If you want information on your prognosis, it is important to talk to your doctor
NCI also has resources to help you understand cancer prognosis
Doctors estimate desmoid tumor survival rates by how groups of people with desmoid tumors have done in the past
Because there are so few desmoid tumor patients these rates may not be very accurate
They also don’t take into account newer treatments being developed
Most desmoid tumors don’t change how long you will live, but they are very difficult to get rid of and can be painful to live with
Desmoid tumors growing in the abdomen can cause problems, such as blocking your intestines
It is important that your doctor monitor the growth of these tumors carefully

Source

NATIONAL CANCER INSTITUTE - CANCER.GOV https://www.cancer.gov/nci/pediatric-adult-rare-tumor/rare-tumors/rare-soft-tissue-tumors/desmoid-tumor

@@ Line 1: / Line 1: @@
 __NOTOC__
 {{Desmoid tumor}}
-{{CMG}} {{AE}}{{S.M.}}{{Faizan}}
+{{CMG}} {{AE}}{{S.M.}}
 ==Overview==
-==Patient information==
+[[Desmoid tumor]] commonly develops by division of [[myofibroblast]] [[Cells (biology)|cells]] in the [[fibrous]] ([[Connective tissue|connective) tissue]] of the [[body]] that forms [[tendons]] and [[ligaments]], usually in the [[arm]]<nowiki/>s, [[legs]], [[abdomen]], [[head]] and [[neck]] or any part of the [[body]]. These [[tissues]] of the [[body]] connect, support, and surround other body parts and [[organs]].
-What is desmoid tumor?
-Desmoid tumors grow from the connective tissue in your body. They grow from fibroblast cells, which make up connective tissue and are also important for wound healing. Connective tissue supports and connects your bones, ligaments, and muscles, and helps hold your organs in place. Desmoid tumors are also known as aggressive fibromatosis or desmoid-type fibromatosis.
-A desmoid tumor can occur anywhere in the body since connective tissue is found everywhere in your body. Desmoid tumors are often found in the abdomen. They can also be found in the shoulders, upper arms, and thighs.
+==What is desmoid tumor?==
+*[[Desmoid tumor]]<nowiki/>s grow from the [[connective tissue]] in your [[body]]
+*They grow from [[fibroblast]] [[Cells (biology)|cells]], which make up [[connective tissue]] and are also important for [[wound healing]]
+*[[Connective tissue]] supports and connects your [[bones]], [[ligaments]], and [[muscles]], and helps hold your [[organs]] in place
+*[[Desmoid tumor]]<nowiki/>s are also known as [[aggressive fibromatosis]] or [[Desmoid tumor|desmoid]]-type [[fibromatosis]]
+*A [[desmoid tumor]] can occur anywhere in the [[body]] since [[connective tissue]] is found everywhere in your [[body]]
+*[[Desmoid tumor]]<nowiki/>s are often found in the [[abdomen]]
+*They can also be found in the [[shoulders]], upper [[arm]]<nowiki/>s, and [[thighs]]
+*[[Desmoid tumor]]<nowiki/>s are [[benign]], which means they are not [[cancer]]
+*While the [[Cells (biology)|cells]] of the [[desmoid tumor]] do not travel to parts the [[body]] like [[cancer]] can, they can invade nearby [[tissue]] and are often very [[painful]]
+*[[Desmoid tumor]]<nowiki/>s can grow slowly or very quickly
+*The quicker they grow the more serious they are
+*[[Desmoid tumor]]<nowiki/>s can be difficult to completely remove with [[surgery]]
+*[[Desmoid tumor]]<nowiki/>s are most common in people between the ages of 15 and 60 years
+*They are more common in [[females]] than [[males]]
-Desmoid tumors are benign, which means they are not cancer. While the cells of the desmoid tumor do not travel to parts the body like cancer can, they can invade nearby tissue and are often very painful. Desmoid tumors can grow slowly or very quickly. The quicker they grow the more serious they are. Desmoid tumors can be difficult to completely remove with surgery.
+==How common is desmoid tumor?==
+Out of one million people worldwide, two to four are diagnosed with a [[desmoid tumor]] per year
-Desmoid tumors are most common in people between the ages of 15 and 60 years. They are more common in females than males.
+==How is desmoid tumor diagnosed?==
+*Some people with [[desmoid tumor]]<nowiki/>s have [[symptoms]], but others don’t
+*[[Symptoms]] can include:
+**[[Pain]]
+**[[Swelling]] in the area of the [[tumor]]
+**[[Sleep]] loss
+*Difficulty [[moving]]
+*For people without [[symptoms]], these [[tumors]] can be discovered if the person has an [[imaging]] test for another reason
-How common is desmoid tumor?
+==Imaging==
-Out of one million people worldwide, two to four are diagnosed with a desmoid tumor per year.
+*If you have [[symptoms]] of a [[desmoid tumor]], your doctor may use [[imaging]] scans such as [[CT]], [[MRI]], or [[ultrasound]] to see where the [[tumor]] is and how big it is
-How is desmoid tumor diagnosed?
+==Biopsy==
-Some people with desmoid tumors have symptoms, but others don’t. Symptoms can include pain, swelling in the area of the tumor, sleep loss, or difficulty moving. For people without symptoms, these tumors can be discovered if the person has an imaging test for another reason.
+*To check if the [[tumor]] is a [[desmoid tumor]] your doctor will do a [[biopsy]], taking a small amount of the [[tumor]] out with a needle
+*An expert, called a [[pathologist]], will study the [[Cells (biology)|cells]] under the [[microscope]] to see what kind of [[tumor]] it is
+*Depending on where the [[tumor]] is in the [[body]], it may be difficult for the doctor to take a [[biopsy]]
-Imaging: If you have symptoms of a desmoid tumor, your doctor may use imaging scans such as CT, MRI, or ultrasound to see where the tumor is and how big it is.
+==How is desmoid tumor treated?==
+*Treatment for each [[patient]] will be unique
+*You should go to an expert in [[sarcoma]] treatment to decide the best approach for your [[tumor]]
+*You can contact MyPART for help finding experts near you
+*[[Desmoid tumor]]<nowiki/>s can be hard to predict
+*They can shrink and go away on their own, they can remain the same size, or they can grow quickly
+*Treatment options to discuss with your doctor include:
+**'''Watch and wait'''
+***In some cases, the [[tumor]] grows very slowly, or even shrinks without any treatment
+***In this case it may be safest for your doctor to check your [[tumor]] regularly without treating it
+**'''Surgery'''
+***[[Surgery]] has been a standard treatment for [[desmoid tumor]]<nowiki/>s in the past, but this may be changing
+***Because the [[tumor]] often returns to the same location after [[surgery]], doctors are looking for other treatment options
+**'''Radiation therapy'''
+***[[Radiation therapy]] is a treatment option for some [[desmoid tumor]]<nowiki/>s
+***Because [[radiation therapy]] can cause other [[cancers]] in the future, it is important to discuss with your doctor
+**'''Chemotherapy'''
+***There is no [[standard]] [[chemotherapy]] for [[desmoid tumor]]<nowiki/>s
+***But, promising new [[drugs]] have been shown to shrink these [[tumors]]
+*It is important to discuss these different options with your doctor and seek second opinions if possible
-Biopsy: To check if the tumor is a desmoid tumor your doctor will do a biopsy, taking a small amount of the tumor out with a needle. An expert, called a pathologist, will study the cells under the microscope to see what kind of tumor it is. Depending on where the tumor is in the body, it may be difficult for the doctor to take a biopsy.
+==Do desmoid tumors run in families?==
+*In 5% to 10% of cases, [[desmoid tumor]]<nowiki/>s may run in families
+*[[Gardner syndrome]]  is a rare [[syndrome]] that runs in families
+*People with this [[syndrome]] have a high risk of [[colorectal cancer]] and [[desmoid tumor]]
-How is desmoid tumor treated?
+==How does desmoid tumor form?==
-Treatment for each patient will be unique. You should go to an expert in sarcoma treatment to decide the best approach for your tumor. You can contact MyPART for help finding experts near you.
+*[[Scientists]] are always working to understand how [[tumors]] form, but it can be hard to prove
+*We know that some people with a [[family history]] of [[desmoid tumor]]<nowiki/>s have a change in a [[gene]] called [[adenomatous polyposis coli]], or [[APC]]
+*This change causes too much of a [[protein]] called [[beta-catenin]] in parts of your [[Cells (biology)|cells]]
+*Too much [[beta-catenin]] can cause [[Cells (biology)|cells]] to grow when they shouldn’t
+*In some [[desmoid tumor]]<nowiki/>s, there is too much [[beta-catenin]], even though [[APC]] is normal
+*[[APC]] and [[beta-catenin]] are important in many common [[cancers]], such as [[colon cancer]], and [[scientists]] are trying to use this information to develop better [[cancer]] treatments, which will help people with [[desmoid tumor]]<nowiki/>s
-Desmoid tumors can be hard to predict. They can shrink and go away on their own, they can remain the same size, or they can grow quickly.
+==What is the prognosis for someone with a desmoid tumor?==
+*The estimate of how a [[disease]] will affect you long-term is called [[prognosis]]
+*Every person is different and [[prognosis]] will depend on many factors, such as:
+**Where the [[tumor]] is in your [[body]]
+**How fast the [[tumor]] grows
+**How much of the [[tumor]] was taken out during [[surgery]]
+*If you want information on your [[prognosis]], it is important to talk to your doctor
+*NCI also has resources to help you understand [[cancer]] [[prognosis]]
+*Doctors estimate [[desmoid tumor]] [[survival rates]] by how groups of people with [[desmoid tumor]]<nowiki/>s have done in the past
+*Because there are so few [[desmoid tumor]] [[patients]] these rates may not be very accurate
+*They also don’t take into account newer treatments being developed
+*Most [[desmoid tumor]]<nowiki/>s don’t change how long you will live, but they are very difficult to get rid of and can be [[painful]] to live with
+*[[Desmoid tumor]]<nowiki/>s growing in the [[abdomen]] can cause problems, such as blocking your [[intestines]]
+*It is important that your doctor monitor the [[growth]] of these [[tumors]] carefully
-Treatment options to discuss with your doctor include:
-Watch and wait: In some cases, the tumor grows very slowly, or even shrinks without any treatment. In this case it may be safest for your doctor to check your tumor regularly without treating it.
-Surgery: Surgery has been a standard treatment for desmoid tumors in the past, but this may be changing. Because the tumor often returns to the same location after surgery, doctors are looking for other treatment options.
-Radiation therapy: Radiation therapy is a treatment option for some desmoid tumors. Because radiation therapy can cause other cancers in the future, it is important to discuss with your doctor.
-Chemotherapy: There is no standard chemotherapy for desmoid tumors. But, promising new drugs have been shown to shrink these tumors
-It is important to discuss these different options with your doctor and seek second opinions if possible.
-Do desmoid tumors run in families?
-In 5% to 10% of cases, desmoid tumors may run in families. Gardner syndrome  is a rare syndrome that runs in families. People with this syndrome have a high risk of colorectal cancer and desmoid tumor.
-How does desmoid tumor form?
-Scientists are always working to understand how tumors form, but it can be hard to prove. We know that some people with a family history of desmoid tumors have a change in a gene called adenomatous polyposis coli, or APC. This change causes too much of a protein called beta-catenin in parts of your cells. Too much beta-catenin can cause cells to grow when they shouldn’t. In some desmoid tumors, there is too much beta-catenin, even though APC is normal.
-APC and beta-catenin are important in many common cancers, such as colon cancer, and scientists are trying to use this information to develop better cancer treatments, which will help people with desmoid tumors.
-What is the prognosis for someone with a desmoid tumor?
-The estimate of how a disease will affect you long-term is called prognosis. Every person is different and prognosis will depend on many factors, such as:
-Where the tumor is in your body
-How fast the tumor grows
-How much of the tumor was taken out during surgery
-If you want information on your prognosis, it is important to talk to your doctor. NCI also has resources to help you understand cancer prognosis.
-Doctors estimate desmoid tumor survival rates by how groups of people with desmoid tumors have done in the past. Because there are so few desmoid tumor patients these rates may not be very accurate. They also don’t take into account newer treatments being developed.
-Most desmoid tumors don’t change how long you will live, but they are very difficult to get rid of and can be painful to live with. Desmoid tumors growing in the abdomen can cause problems, such as blocking your intestines. It is important that your doctor monitor the growth of these tumors carefully.
 ==Source==
 NATIONAL CANCER INSTITUTE - CANCER.GOV https://www.cancer.gov/nci/pediatric-adult-rare-tumor/rare-tumors/rare-soft-tissue-tumors/desmoid-tumor
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