What is Neurological (Central Nervous System - CNS) Cancer/Tumor?

Neurological (CNS) tumors can be malignant (cancerous) or benign (noncancerous).

• Malignant brain and spinal cord tumors tend to grow faster than benign tumors and can spread to other parts of the brain.
• Benign brain and spinal cord tumors rarely spread to other areas of the brain or body. They are usually less aggressive than malignant tumors.

Both malignant and benign tumors can come back (recur) after treatment.

Types of neurological (CNS) tumors include: 

• Astrocytic tumors (malignant)
• Oligodendroglial tumors (malignant)
• Mixed gliomas (can be benign or malignant)
• Ependymal tumors (malignant)
• Medulloblastomas (malignant)
• Pineal parenchymal tumors (usually benign)
• Meningeal tumors (usually benign)
• Germ cell tumors (usually malignant)
• Craniopharyngioma (Grade I) (usually benign)

Astrocytic Tumors

Astrocytic tumors start in the brain cells called astrocytes (a type of glial cell). Astrocytes are responsible for keeping nerve cells healthy. Types of astrocytic tumors include: 

• Brain stem glioma (often high grade): This type of tumor occurs in the brain stem at the base of the head, just above the neck. The brain stem connects to the spinal cord. This type of tumor often spreads throughout the brain stem. It’s rare in adults.
• Pineal astrocytic tumor (any grade): This tumor develops around the pineal gland, a tiny organ in the brain that produces melatonin. Melatonin is the hormone that controls your natural sleep-wake cycle.
• Pilocytic astrocytoma (grade I): This slow-growing tumor occurs in the spinal cord or brain. It rarely spreads to surrounding tissues and may develop as a cyst. Most cysts are benign.
• Diffuse astrocytoma (grade II): This type of tumor—also called a low-grade diffuse astrocytoma—is slow-growing, but it often spreads to surrounding tissues. Its cells look similar to normal cells under a microscope.
• Anaplastic astrocytoma (grade III): This tumor is fast-growing and spreads to nearby tissues. Its cells look abnormal under a microscope. It’s also called a high-grade astrocytoma or malignant astrocytoma.
• Glioblastoma (grade IV): A glioblastoma—also called glioblastoma multiforme—grows and spreads rapidly. Its cells look abnormal under a microscope. Glioblastoma is the most aggressive type of glioma.

Oligodendroglial Tumors

Oligodendroglial tumors start in the oligodendrocytes, which are brain cells that help keep the nerve cells healthy. Like astrocytes, oligodendrocytes are a type of glial cell. Tumors that affect the oligodendrocytes include:

• Oligodendroglioma (grade II): This type of tumor is slow-growing, but typically spreads to surrounding tissues.
• Anaplastic oligodendroglioma (grade III): This tumor type is fast-growing and spreads to nearby tissues. Its cells look abnormal under a microscope.

Mixed Gliomas

Mixed gliomas are brain tumors with two types of tumor cells: astrocytes and oligodendrocytes. Mixed gliomas are also called oligoastrocytomas. These include:

• Oligoastrocytoma (grade II): This type of tumor is slow-growing. Its cells often look normal under a microscope.
• Anaplastic oligoastrocytoma (grade III): This tumor type is fast-growing and spreads to surrounding tissues. Its cells look abnormal under a microscope.

Ependymal Tumors

Ependymal tumors—also called ependymomas—occur in the cells that line the fluid-filled areas around the spinal cord and in the brain. Types of ependymomas include:

• Ependymoma (grade I or II): This tumor type is slow-growing and its cells resemble normal cells under a microscope. Grade I ependymomas include myxopapillary ependymomas and subependymomas. Grade II ependymomas grow in the fluid-filled area of the brain called the ventricle and its connecting paths. They also grow in the spinal cord.
• Anaplastic ependymoma (grade III): This fast-growing tumor spreads to surrounding tissue. Its cells look abnormal under a microscope.

Medulloblastomas

A medulloblastoma is an embryonal tumor that grows in the embryonic (fetal) tissue. It can be benign or malignant. Medulloblastomas are more common in young adults and children.

Pineal Parenchymal Tumors

Pineal parenchymal tumors occur in the parenchymal cells or pineocytes. Pineocytes are cells that make up the pineal gland. Pineal parenchymal tumors include: 

• Pineocytoma (grade II): A slow-growing type of tumor.
• Pineoblastoma (grade IV): A rare tumor type that often spreads to nearby tissues.

Meningeal Tumors

Meningeal tumors, also called meningiomas, develop in the meninges. The meninges are the thin layers of tissue that cover the spinal cord and brain. Meningiomas are more common in adults than in children. Types of meningeal tumors include:

• Meningioma (grade I): The most common type of meningeal tumor. It’s slow-growing and occurs most often in the dura mater (the outer layer of tissue that covers the spinal cord and brain). This type of tumor may be completely removed by surgery.
• Meningioma (grade II and III): This is a rare type of meningeal tumor. It tends to grow and spread quickly in the brain and spinal cord. It usually can’t be completely removed by surgery.

There is also a type of tumor called a hemangiopericytoma, which isn’t a meningeal tumor, but requires the same treatments as a grade II or III meningioma. Hemangiopericytomas typically form in the dura mater and can’t be completely removed with surgery.

Germ Cell Tumors

Germ cell tumors develop in the germ cells, which are cells that turn into ova (eggs) in women and sperm in men. Germ cell tumors can be benign or malignant. Tumor types include:

• Pineal germinomas: This type of tumor develops in the brain’s pineal gland.
• Teratomas: These tumors can occur throughout the body, including in the central nervous system. They may be noncancerous or cancerous.
• Embryonal yolk sac carcinomas: These tumors are rare in adults. They’re called yolk sac carcinomas because their cells resemble the yolk sac of an embryo.
• Choriocarcinomas: These are malignant, fast-growing tumors that develop in the trophoblastic cells, which are cells that help form the placenta and help embryos attach to the uterine lining.

Craniopharyngioma (Grade I)

A craniopharyngioma is a rare tumor in the center of the brain above the pituitary gland.

To understand neurological (CNS) cancer, it’s first important to understand what cancer is: basically, the production of abnormal cells.

The body is programmed to routinely replenish cells in different organs. As normal cells age or get damaged, they die off. New cells take their place. This is what’s supposed to happen.

Abnormal cell growth refers to a buildup of extra cells. This happens when:

• New cells form even though the body doesn’t need them
• Old, damaged cells don’t die off

These extra cells slowly accumulate to form a tissue mass, lump or growth called a tumor. These abnormal cells can destroy normal body tissue and spread through the bloodstream and lymphatic system.

The first thing to understand is that a growth can be either benign or malignant. You’ve probably heard these terms. Here’s exactly what they mean:

• Benign means not cancerous. A benign tumor can grow larger but does not spread to other tissues or organs. Benign tumors:
  • Can be removed
  • Usually don’t grow back
  • Are rarely fatal
  • Don’t spread to other tissues or body parts
• Malignant means cancerous. The cells of a malignant tumor can spread and invade nearby tissues and organs. They are destructive. Malignant tumors:
  • Can often be removed
  • Sometimes grow back
  • Can invade and damage other tissues and organs
  • Can spread to other body parts
  • Can be fatal

A person’s chance of developing a malignant neurological (CNS) tumor in their lifetime is less than 1%. The risk is slightly higher for women, though men are slightly more likely to develop a malignant tumor.

While a risk factor doesn’t mean you will develop neurological (CNS) cancer, it can increase your risk. Though the cause of most brain and spinal cord tumors is unknown, the following may increase your risk of certain tumors:

• Exposure to vinyl chloride (may increase the risk of gliomas)
• Certain genetic syndromes may increase your risk of a brain tumor, including:
  • von Hippel-Lindau disease
  • Tuberous sclerosis
  • Neurofibromatosis type 1 (NF1) or 2 (NF2)
  • Turcot syndrome type 1 or 2
  • Nevoid basal cell carcinoma syndrome
  • Li-Fraumeni syndrome

Talk to your physician if you have any of these risk factors. 

As you and your doctor explore the treatment options, make sure you find out the answers to the following:

• What are my treatment choices? Which do you recommend for me and why?
• Will I have more than one kind of treatment?
• What are the expected benefits of each type of treatment?
• What are the risks and possible side effects of each treatment? What can we do to control the side effects?
• What can I do to prepare for treatment?
• Will I need to stay in the hospital? If so, for how long?

You may want to ask these questions before the doctor takes a sample of tissue:

• Which procedure do you recommend?
• How will the tissue be removed?
• Will I have to stay in the hospital? If so, for how long?
• Will I have to do anything to prepare for it?
• How long will it take?
• Will I be awake?
• Are there any risks?
• How long will it take me to recover?
• How soon will I know the results? Who will explain them to me?
• What is the treatment likely to cost? Will my insurance cover the cost?
• How will treatment affect my normal activities?
• Would a clinical trial be right for me?
• How often should I have checkups after treatment?
• What are the chances my cancer will come back after this treatment?
• What will we do if the cancer comes back or the treatment doesn’t work?
• Will I lose my hair?
• Will it be painful?
• Will there be scars?
• What are the long-term and short-term side effects of treatment and how can I manage them? 

Your immune system plays a big part in your fight against cancer. It is essential to stay as healthy as possible while undergoing cancer treatment. Here are some tips: 

• Practice food safety.
• Wash your hands often, and ask your family, healthcare providers and visitors to do the same.
• Bathe every day with warm water and gentle soap.
• Ask your doctor if you should get a flu vaccine or the COVID-19 vaccine.
• Wear a mask when in public and around other people.
• Brush your teeth after meals with a soft toothbrush.
• Do your best to avoid cuts. Wear gloves when cleaning or gardening.
• If you get a small cut, wash it with soap and water, apply antibiotic cream, and put a bandage over it.
• Contact your doctor immediately if you suspect you have an infection, particularly if you have a fever.
• Be physically active.
• Maintain a healthy weight.
• Don’t use tobacco products.
• Protect your skin from the sun with sunscreen, sun-protective clothing and a wide-brimmed hat.
• Eat plenty of vegetables and fruit.
• Limit or avoid drinking alcohol.

Do your best to evaluate your financial situation as soon as possible. You will not want to deal with financial stress in the middle of treatment when you may not feel well. A social worker can help with this process. If you don’t currently have a social worker, ask your doctor or nurse navigator for a recommendation.

It’s important to plan ahead as much as possible when beginning cancer treatment. Ask your nurse navigator or social worker if they can recommend resources to help with the logistics of treatment.

With Your Healthcare Team

When going through cancer treatment, your healthcare team is very important. Your healthcare team may include your oncologists, surgeon, nurse navigator, dietitian, social worker or other medical professionals. Every member plays an important role. Use the tips below for talking with your healthcare team:

• Establish your main point of contact.
  • Your main point of contact will probably be a nurse navigator, but it may be another member of your healthcare team. Find out who you should contact first with questions.
• Don’t be afraid to ask questions.
  • Be open and honest with your healthcare team about your physical and emotional well-being.
  • Cancer is usually not a medical emergency. There is time to ask your healthcare team any questions you may have and consider your treatment options.
  • Write down your questions before your appointments. Take a pen and paper to write down the answers.
  • If you develop any new problems or symptoms during treatment, tell your healthcare team immediately. You are not complaining. This is valuable information for your doctors.
  • Do not change your diet, start an exercise program or take any new medications, including vitamins and supplements, during treatment without talking to your healthcare team first.
• Seek support if you need it.
  • Join a support group of other cancer patients and survivors to share your story and receive encouragement.
  • Pursue counseling for yourself and your family if you’re struggling to cope with your diagnosis.
  • Your nurse navigators can assist you in identifying these resources.

With Your Caregiver

Your primary caregiver may be with you when you receive your diagnosis. Your primary caregiver may be your spouse, partner, adult child, parent or friend. This person may come with you to appointments, take care of you after surgery or treatment and support you throughout your cancer journey. Here are some tips for communicating with your caregiver:

• Everyone reacts to the news of cancer differently. You may feel upset, shocked or angry. It may take you some time to process the information. Your caregiver may react the same way you do or your caregiver may not. Even if they don’t react the same way you do, it doesn’t mean that they don’t care deeply.
• Establish your role and your caregiver’s roles early. For example, will your caregiver be the one scheduling most of your appointments or do you prefer to take an active role? Find what works best for you and your caregiver.
• Be open with each other about how you both feel. Overly positive attitudes may hinder honest communication. It’s okay to be upset.
• Encourage your caregiver to take time to care for their own physical and emotional well-being. Being a caregiver comes with its own hardships.
• If your primary caregiver is your spouse or partner, your intimate and physical relationship may change. Cancer treatment and side effects can potentially affect your libido and sexual function. If you have questions or concerns about sexuality and intimacy during and after cancer treatment, talk to your nurse, doctor or social worker.

With Your Children 

Children are very perceptive, no matter their age. While you may wish to protect your children by not telling them about your cancer diagnosis, even young children may be able to tell that something is wrong. Not knowing what is wrong may cause them more stress and anxiety.

Here are some tips to talk to your children and teens about your cancer diagnosis:

• Wait until your emotions are under control and decide what to say ahead of time.
• Tell the truth and answer questions honestly. Depending on your children’s ages, it may not be appropriate to give them all the details, but do be truthful.
• Let them know what to expect. For example, tell them that after surgery, you will need a lot of rest and may need to stay in the hospital. If your chemotherapy may cause you to lose your hair, let them know. Keep your children in the loop as much as possible.
• Explain to your children, especially younger children, that they cannot “catch” cancer.
• Let your children know that it is okay to cry or be upset. This may be especially important for your teens to hear.
• Tell teachers, babysitters and others with responsibilities with and around your kids about your diagnosis in case they see behavior changes you may need to know about.
• Maintain normal schedules as much as possible.
• Let your kids help. Allow them to help with chores and let them know that their help is important. Teens may want to take an active caregiver role. Let them do so, at appropriate levels.
• Look for support groups in your area. Many places offer support groups for children and teens whose parents have a cancer diagnosis.
• Know when to seek professional help. If your child begins to demonstrate unusual behavior such as angry outbursts, nightmares or poor grades in school, ask your healthcare team for a recommendation for a counselor.

With Family and Friends

You may choose to keep your cancer journey private or you may choose to share your story with others. The choice is yours. Remember, when family, friends, coworkers or other acquaintances ask about your diagnosis, they are genuinely concerned about your well-being. You can share with them as much or as little information as you like. These suggestions may help you talk about your diagnosis:

• Decide how much information you want to share before you start telling people about your diagnosis.
• If you chose to keep your journey private, let people know that you appreciate their concern, but you hope they respect your privacy.
• Choose someone close to you, like your caregiver, to spread the word about updates and treatment progress. After a long day of treatment, you may not feel like calling and texting people, but your friends and family will probably want to know how you are.
• If you want to share your story, consider starting an email chain or a Facebook group. This way, you can update everyone with one message instead of answering a lot of emails and phone calls.
• You can also create your own private website at MyLifeLine.
• When people offer to help, let them. Your family and friends could cook dinner, drive you to an appointment, help clean your home, run errands or babysit.
• If you lose your hair due to treatment or have visible surgical scars, strangers may ask about your diagnosis. Have a response prepared. Again, you may share as little or as much as you like.