If you have recently been diagnosed with sarcoma, in the coming days and weeks you may feel lost, overwhelmed, and unsure of what to do first. There are resources and support available to help you. Take a deep breath and use this guide to help you get started.
First, Do Your Research.
What is sarcoma? It is important to take the time to understand the basics of your diagnosis. Knowledge is power. We have all heard of breast, prostate, or brain cancer, but chances are sarcoma is not familiar to you or your family. The first step in becoming your own personal advocate is to learn more about sarcoma.
Although the internet can provide a vast amount of information, remember that not everything we read is true. It is important to reference only reliable websites to gain accurate information, and refrain from researching statistics or life expectancy. This information can be scary and may not relate to your specific diagnosis.
Select a Treatment Center.
It is essential to find the right fit for treatment. Start by identifying a high-volume sarcoma center, one that treats a minimum of 50 sarcoma patients yearly. Because sarcomas are rare, you will need treatment by a care team that specializes in this disease.
Do not assume that your local oncologist is familiar or qualified in this instance. The Sarcoma Alliance maintains an updated list of medical centers and hospitals specializing in sarcoma that meet the specific criteria of a sarcoma center. Take the time to figure out which one works best for you based on their experience with your sarcoma subtype, as well as their geographic location, and whether they are in network with your insurance.
Prepare for Your First Appointment.
Ask for Help.
Talk with Loved Ones.
The conversation with family and loved ones about cancer is a difficult but important step. When a parent or guardian is involved, the age of the child(ren) will be important in deciding what and how much you should tell about a cancer diagnosis.
The guiding principle should be to tell the truth in a way that children are able to understand so that they can prepare themselves for the changes that will happen in the family.
Kids thrive on routine—it helps them feel safe. When life becomes unpredictable, they will need help adjusting to the changes. Young children (up to 8 years old) will not need a lot of detailed information, while older children (8 to 12 years) and teens will need to know more. Teens will have very different concerns from a 5-year-old who needs adults for basic care giving.
Consider Work and Personal Finances.
If you are employed, contact your human resources representative to understand medical benefits and costs related to your insurance. You will need to consider not only the costs related to your oncologist and other team members, but also imaging, pathology, and lab tests. Let your advocate help you understand out-of-pocket maximums, co-insurance provisions and in-network versus out-of-network costs.
You will also want to learn more about:
- Short term disability, long term disability
- Employment assistance, FMLA
- Legal assistance
You should also consider researching your privacy rights as regards your cancer at work. You will need to decide how much to tell your employer about your cancer. Depending on your situation, you may have rights under the American Disabilities Act. This is another area in which a social worker can be of value in helping.
Finally, Take Care of Yourself.
It is essential to take care of your mental health during your cancer journey. Counseling is working with a mental health professional to cope with the challenges that come with a cancer diagnosis. Counseling can help you understand your feelings and reactions, and it provides a safe place to talk about your worries. A counselor can provide a helpful, outside viewpoint and is trained to help you deal with difficult situations.
You may want to consider therapy, either as an individual or part of group therapy. Most large hospitals and treatment centers also offer psycho-oncology support and a palliative care team. There are as many mental side effects to cancer as there are physical; learn more and don’t be afraid to get the appropriate resources.