A papillary craniopharyngioma is a rare type of brain tumor that grows near the pituitary gland. It’s often treatable, and surgery is the primary option for many people.

A craniopharyngioma is a very rare type of brain tumor. Only about 600 people in the United States get a diagnosis of this tumor type each year. There are two subtypes of craniopharyngioma: adamantinomatous and papillary.

Papillary craniopharyngiomas are the less aggressive of the two types, and they’re the type that doctors most often see in adults. Papillary craniopharyngiomas are often treatable with surgery.

It’s not clear what causes papillary craniopharyngiomas. Unlike with some other tumor types, there aren’t any known genetic or chromosomal causes. Also, there aren’t any known risk factors for this type of brain tumor.

The exact symptoms of a papillary craniopharyngioma can vary depending on the size and location of the tumor.

Children and teenagers with papillary craniopharyngiomas can have additional symptoms, including delayed growth and delayed puberty. However, it’s rare for children to have this type of craniopharyngioma.

There are a few options for treating a papillary craniopharyngioma. The primary treatment for most people is surgery. The surgeon will be able to remove the tumor and collect tissue samples to confirm an exact diagnosis.

There are two surgical options for papillary craniopharyngiomas: open craniotomy and endonasal craniotomy.

During an open craniotomy, a surgeon creates a temporary opening in the skull to access the brain and remove the tumor. They then use surgical plates to close the skull.

The endonasal procedure uses a small, flexible tube called an endoscope, which has a camera, a light, and surgical tools attached. A surgeon inserts the tube through the nose and into the brain, and the camera sends back a video feed that the surgeon uses to find and carefully remove the tumor.

Factors such as the size and location of your tumor can help doctors determine which surgical technique might be the best option for you.

There are a few secondary treatment options for papillary craniopharyngiomas. These include:

  • Radiation therapy: Radiation therapy can target any tumor cells that remain after surgery or that come back after surgery.
  • Chemotherapy: Doctors use chemotherapy less often for papillary craniopharyngiomas, but it might be an option for some people.
  • Clinical trials: Papillary craniopharyngiomas are rare, but experts are developing new treatments. Your doctor can assess whether you’re a good candidate to take part in clinical trials of new treatment options.

Craniopharyngiomas are rare tumors, and survival data isn’t gathered as often as for many other tumor types. Additionally, recent data isn’t split into survival rates for adamantinomatous craniopharyngiomas and survival rates for papillary craniopharyngiomas.

However, in a study that analyzed 1,213 people with craniopharyngiomas between 2004 and 2017, researchers found an overall 5-year survival rate of 86.2%.

As is true with all tumors, individual factors such as the size and location of your tumor, along with your age and overall health, can affect survival. It’s best to talk with your doctor about the outlook for your specific tumor.

Living with a papillary craniopharyngioma

It can be overwhelming to manage a condition such as a papillary craniopharyngioma, but there are resources you can turn to for support. You can try reaching out to:

  • The American Brain Tumor Association (ABTA): The ABTA offers education resources, tips on living with a brain tumor, connections to support groups in your local area, and more.
  • National Brain Tumor Society (NBTS): You can learn about brain tumors, find the best doctors in your local area, sign up for advocacy and awareness events, join online support groups, and more when you visit the NBTS website.
  • Brain Tumor Network: You can get the support of a patient navigator to help you through your treatment journey, along with a wealth of other resources, by connecting with the Brain Tumor Network.
  • Voices Against Brain Cancer: Voices Against Brain Cancer offers Brain Cancer Coaches who can connect you with resources, help you navigate treatment, provide support, and offer guidance.

Papillary craniopharyngiomas are very rare brain tumors that grow near the pituitary gland. They’re more common in adults than children, and they cause a wide range of symptoms, including vision changes, headaches, excessive hunger and thirst, hormonal changes, and fatigue.

The most common treatment option for a papillary craniopharyngioma is surgery to remove the tumor. Doctors often use radiation therapy to target any cancer cells that remain after surgery.

Individual factors can affect the outcome of a papillary craniopharyngioma, but it’s usually treatable.