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Desmoid tumors are known for being aggressive and often growing back after surgery, making them hard to treat. In the past, surgery was the go-to option, but current guidelines recommend it only in certain cases.
If your doctor recommends surgery for a desmoid tumor, make sure you know the reason and what to expect after the procedure. This article explains when surgery for a desmoid tumor may be recommended and what to expect with recovery and follow-up care.
Desmoid tumors are also known as aggressive fibromatosis. They are rare, noncancerous growths that develop in the body’s soft or connective tissues (nerves, ligaments, muscles, and tendons).
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Surgery was once the standard desmoid tumor treatment but is no longer the first-line approach. Desmoid tumors tend to return after surgery, so other treatment options are now preferred.
Your care team may suggest active surveillance (monitoring the tumor periodically without treating it) or medical therapy.
While surgery is no longer the primary treatment for desmoid tumors, there are situations when it may be appropriate. These include:
The recovery process after desmoid tumor surgery can vary. Recovery time depends on where the tumor is, how big it is, and how complex the surgery is. Here’s a general outline of what you can expect during the recovery process.
Your recovery time depends on several factors, including your tumor location, how complex your surgery was, and how fast you heal.
Pain is common after surgery, and you’ll receive medication to manage discomfort. The intensity and duration of pain can vary based on the tumor’s location and the extent of the surgery.
Immediately after surgery, you’ll be closely monitored for complications such as infection, bleeding, or issues with wound healing. Medical staff will also help you move around as needed.
During surgery, one or more plastic drains may be placed to prevent fluid from collecting in the surgical area. The drains are often removed before discharge from the hospital, but sometimes people go home with them.
It’s important to take proper care of your surgical site. This helps prevent infection and promotes healing. You’ll receive instructions on how to clean and dress your wound. Your doctor will likely recommend that you avoid strenuous activities that could stress the incision site.
Regular follow-up appointments will be scheduled to monitor the healing process and address any concerns. During these visits, your surgical team will:
Your doctor may encourage you to slowly return to normal activities as you feel comfortable. However, lifting heavy objects and intense physical activity should be avoided until your doctor gives the all-clear.
Depending on the surgery’s impact, physical therapy may be recommended to help rebuild your strength and mobility. This is especially true if the tumor was in your arms or legs, or made it harder to move.
Recovering from surgery can be emotionally challenging. You might benefit from counseling or support groups to help cope with the stress and anxiety related to your condition and recovery.
Even after a successful
surgery, follow-up care is critical for managing desmoid tumors. This is because the tumors can grow back after surgery.
You’ll need regular imaging tests, such as MRI or CT scans, to check for signs of new tumor growth. Your healthcare team will tell you how often you need to return for monitoring and new scans. This can depend on your individual risk factors and certain aspects of your tumor.
Typically, scans are scheduled every three to six months at first. They can become less frequent over time if your tumor doesn’t come back. Monitoring helps make sure that new growths are identified and allows you and your care team to determine the best next steps.
If a tumor returns, your treatment plan may involve nonsurgical options such as medication, radiation therapy, or other localized treatments like cryoablation.
You might need to make lifestyle changes to support your overall health and well-being. These healthy measures may include:
Staying active can help improve overall physical function and mental health. Be sure to follow your healthcare team’s advice on the types of exercise that are safe after surgery.
Chronic pain or discomfort
can be an ongoing issue for some people after desmoid tumor surgery. Your healthcare team may recommend medications, physical therapy, and alternative therapies, such as acupuncture. Relieving pain is important for improving quality of life and allowing you to return to your normal routine after surgery.
Coping with the possibility of your desmoid tumor returning can be stressful. Ongoing emotional and psychological support can help you manage anxiety and maintain a positive outlook.
Support groups, counseling, and mental health services can provide a platform for you to share your experiences and gain support from others facing similar challenges. Addressing the emotional and psychological aspects of recovery is as important as managing the physical aspects.
It’s important to educate yourself about the nature of desmoid tumors and any signs that they might return. Regular follow-ups can empower you to take an active role in your care.
Be sure to communicate openly with your healthcare team. Ask questions and seek a second opinion if necessary. Being well-informed can help you make better decisions about your treatment options and follow-up care.
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33 years ago surgery, still painful, two ribs and abdominal tissue removed for clear margins lucky.wish drug option back then.
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