Desmoid Tumors and Social Security Disability Benefits - Desmoid Tumor Research Foundation


Learn how to apply for social security disability benefits if you are suffering from desmoid tumors.


If you have been diagnosed with a Desmoid tumor, the last thing on your mind should be worrying about finances. Fortunately, there could be help available. The Social Security Administration (SSA) offers disability benefits for people who are ill and no longer able to work. If your Desmoid tumor treatments or complications will keep you from working for 12 months or more, you could be eligible.


Medically Qualifying with Desmoid Tumors

The biggest challenge for people diagnosed with Desmoid Tumors will be medically qualifying for disability benefits. When the SSA receives an application for disability benefits, it will compare your medical records to its own medical guide known as the Blue Book. The Blue Book lists what illnesses can qualify, and what test results you’ll need to qualify.

Desmoid tumors are not listed in the Blue Book. The only similar listing, Soft Tissue Sarcoma, requires that your tumor is malignant. Because Desmoid tumors are not classified as malignant by the SSA, you will not be able to meet the Soft Tissue Sarcoma listing. This also means that you will not be able to meet the SSA’s Compassionate Allowance listing for Soft Tissue Sarcomas that have returned despite treatment.

Because there is not a suitable Blue Book listing to meet, you will need to prove that you are unable to work through a Medical Vocational Allowance.


Qualifying Through a Medical Vocational Allowance

A Medical Vocational Allowance is where the SSA approves a disability applicant even when he or she does not meet any Blue Book listing. This is done when your illness keeps you from performing any work that you are qualified for.

Applicants with Desmoid tumors who are older will be more likely to be approved through a Medical Vocational Allowance because the SSA will assume that they will be less likely to be retrained for another job. You will also have a better chance of qualifying through a Medical Vocational Allowance if you do not have a college degree or any other form of education past high school. This is because applicants with college degrees may be more likely to be able to take a sedentary desk job than those without.

Example: Jodi is a 59-year-old woman who has been diagnosed with Desmoid tumors in her abdomen. She will be going through treatments for the next 24 months. She never went to college and has only ever worked in retail, which requires her to stand on her feet all day. Because her chemotherapy and surgery limits her to primarily bed rest, she may qualify for disability benefits through a Medical Vocational Allowance.

Tina, on the other hand, is a 30-year-old marketer who has been diagnosed with Desmoid tumors in her abdomen. She will also receive two years of radiation and other therapies. But Tina works primarily at a desk or from home, and she has a Master’s degree. The SSA does not approve her for disability benefits because it believes she could still attain gainful employment ($1,130 or more per month in 2016).


What You Need to Apply For a Medical Vocational Allowance

The primary form the SSA will need to approve an applicant through a Medical Vocational Allowance is a Residual Functional Capacity (RFC) evaluation. This is a guide that is found online on the SSA’s website. You can download the RFC and ask your physician or oncologist to fill it out on your behalf.

An RFC is a detailed questionnaire that covers exactly how much physical movement or labor you can do: how much you can lift, how long you can stand or stay seated, how far you can walk, etc. The SSA will compare this report with your medical records and your work history to determine whether or not the physical activity you are capable of will keep you from finding employment.


How to Apply for Disability Benefits

If you are ready to apply for benefits, you have a few options. The most straightforward way is to apply entirely online on the SSA’s website. You can also schedule an appointment to apply in-person at one of the SSA’s 1300 offices across the country. You can do so by calling the SSA toll-free at 1-800-772-1213.

The most important component of applying will be listing all of the doctors you’ve received treatment from, as well as any hospitals where you’ve been treated. Because Desmoid tumors are not found in the Blue Book, you will need to submit as much medical evidence as possible to qualify.

With any luck, your claim will be approved in 3-6 months and you can focus on what’s important: recovery.

This article was provided by Social Security Disability Help, an independent organization dedicated to helping people of all ages receive disability benefits. If you need any additional assistance with your claim, we can be contacted at