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Have you or someone you love just been diagnosed with a desmoid tumor? Are you unsure what steps to take in the wake of this diagnosis?
Taking the steps listed below will help you take control of your health and support your quality of life. If you’re caring for someone with a desmoid tumor, doing these things can help them feel loved and supported.
The more you understand about these rare tumors, the better you’ll be able to advocate for yourself so you can have the best outcome. Desmoid tumor can be a complicated condition, so you’ll want to make sure you get information from reliable sources and talk it through with your doctors, too.
Learning about desmoid tumor can feel overwhelming, so it’s important to take breaks as needed. You may also want to have a close friend or family member learn with you so some of the information can be stored in their head, not just yours.
There’s not just one way to treat or manage desmoid tumors. A lot will depend on where they are, how big they are, the symptoms you’re having, if and how the tumors interfere with your daily life, how fast the tumors are growing, and more. Some may only need active surveillance or close monitoring, while others may require treatments like targeted therapies.
The more you understand about your tumors and the options specific to you, the better you’ll be able to choose a treatment plan that fits your needs. Your sarcoma specialist will be part of this process, too, of course, but knowing more puts you in a better place to make good choices.
Most of the time, doctors who have expertise in desmoid tumors are sarcoma specialists. These are oncologists, or cancer doctors, who treat soft tissue tumors. You may have access to sarcoma specialists at a cancer center in your area or you may need to travel to get care. If you’re not currently being cared for by a specialist, ask your healthcare provider about a referral.
In addition to working with a sarcoma specialist, you may also need some other people on your team. These may be experts in medical oncology, surgery for cancer (surgical oncology), pathology, radiology (imaging), and more. You may even want to include mental health specialists on your team.
If you have options for specialists in your area, interview them before you decide who to work with. You can ask them about everything from their treatment philosophy to how often they schedule office visits to whether they take your insurance. These answers, as well as their demeanor when you talk to them, can help you decide who you’re most comfortable working with.
There are a lot of options when it comes to resources for desmoid tumor support. The Desmoid Tumor Research Foundation (DTRF) works to connect people and advocate for desmoid tumor awareness and research. If there’s an active chapter in your area, they could help you out. There are also support groups available, both online and in person, for people with desmoid tumor or related conditions. Your cancer center can direct you to some if you want to attend in person.
Paying for desmoid tumor medications and treatments can get expensive, even if you have good insurance coverage. DTRF can be another good resource for helping with costs. If there are state or local resources available, a social worker at your cancer center can connect you to them. Request a meeting with this person as early in your journey as possible so you can get the financial support you need right from the start.
Getting a diagnosis like desmoid tumor can lead to feelings like anger, anxiety, denial, and fear. Taking the time and energy to process these will help you throughout your journey. You may need to journal, share with people you trust, or talk to a counselor or a therapist to get through it all. Investing in these things from the beginning can make your entire journey with desmoid tumor smoother and offer some protection against mental health issues like depression and anxiety.
If you’re not sure how to seek help for your mental health, you can talk to your primary care provider, your desmoid tumor care team, or a social worker at your hospital. They can help connect you with a qualified mental health provider.
Staying connected to the people around you and asking them for help when you need it will help you thrive. One MyDesmoidTumorTeam member shared, “What helped me was to be honest and open with folks. Lean on those closest to you.”
This can feel counterintuitive if you’re used to handling things on your own, even when it’s hard. However, asking for and accepting help allows people to contribute to your well-being and show that they care about you. It also relieves the burden on your immediate caregivers when they don’t have to do everything.
As much as you can, maintaining good nutrition, regular physical activity, and other healthy habits will serve you well during your journey with desmoid tumor. A MyDesmoidTeam member explained, “The most important daily activity that makes a huge difference in my physical and mental well-being is exercising as rigorously as I’m able every day and practicing good nutrition, along with meditation.”
Doing these things will help you have as much energy as possible, feel your best, and deal with the added stress that comes with desmoid tumor. If you can’t keep up your habits for a while because of treatments or the condition itself, aim to get back to them as soon as you can.
No matter what gives you purpose, focusing on that as you’re treating your desmoid tumors can help you make the most of every minute. For many people, this means spending more time with family members and close friends. It can also mean volunteering as you’re able, donating to causes you care about, taking time for creative pursuits, and generally choosing to put your time and energy into the things you value the most.
Different people cope in different ways, and strategies that have worked for you before may not work for you now. That’s OK, because you have a lot of options when it comes to healthy coping mechanisms. Some people may turn to religion, while others choose to express their creativity. Journaling, meditating, stimulating your mind, or continuing to attend weekly meetings for your favorite activity can all be good ways to cope with a desmoid tumor diagnosis.
On MyDesmoidTumorTeam, people share their experiences with desmoid tumor, get advice, and find support from others who understand.
What were the first steps you took after being diagnosed with desmoid tumor? Let others know in the comments below.
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