The Basics

Brain and Spinal Tumors

If you are trying to cope with a tumor of the brain or spinal cord (together called the central nervous system), RIBSTF wants to help. We provide information and support for patients and their family members. On this page, we answer some basic questions that may arise after the first hint of a tumor.

I just heard the diagnosis, and I'm scared. Is the situation hopeless?

Many tumors of the central nervous system stay under control for years with treatment. Indeed, some patients enjoy a full life after diagnosis. We wish we could say that everyone experiences good outcomes, but for some people, these tumors cause disability or death. How well a person fares after being diagnosed with a brain or spinal tumor depends on a number of things, including:

  • The type and location of the tumor
  • How abnormal the cells that form the tumor look
  • How quickly, or aggressively, they grow and spread
  • The person’s overall health and level of functioning at the time of diagnosis
  • The treatment received

A tumor means cancer, right?

Actually, a person who has a tumor might not have cancer. “Tumor” simply means an abnormal mass of cells. Some tumors contain cancerous cells; others do not. To understand how tumors and cancer develop, you need to know that many of the cells in our body are constantly growing and splitting to form new ones. One cell becomes two, two change into four, and so on. When cells grow old, they die, and new ones replace them. All cells contain code that tells them what to do, but sometimes mistakes appear in it. As a result, the abnormal cells may grow and divide wildly, thereby making other unruly cells that do the same. Less often, the cells simply outlive their usefulness. In any case, the cells may then form a tumor. Cancer results when the tumor cells grow so fast that they threaten to harm tissue to which they spread.

My doctor said I need surgery to save me from a life-threatening tumor.

Many patients and relatives ask, “Is it benign or malignant?” They hope for “benign,” having heard that benign tumors
do less harm than malignant ones. However, the distinction between benign and malignant matters less for tumors that start in the brain or spine than in other body parts. While both benign and malignant tumors can grow, benign ones stay separate from nearby tissue because a “wrapper” surrounds them. As long as they stay benign, they do not spread to distant sites. Treatment can usually remove them completely. Even so, in the enclosed spaces of the brain and spinal cord, benign tumors can cause big problems. They can press against the skull, spinal cord, or nerves. They can block the flow of blood or cerebrospinal fluid, which cushions the brain and spinal cord. They can hurt nerves or other tissue. In these ways, so-called “benign” tumors can steal patients’ lives or abilities. Furthermore, they sometimes turn malignant. Unlike benign tumors, malignant ones lack clear edges and tend to invade deep into nearby tissue. This makes it hard to remove them or even to know whether treatment got rid of every last bit of them. Also, they are more likely than benign tumors to return. In most of the body, malignant tumors often spread far from where they started, but those that arise in the brain or spinal cord rarely go beyond the central nervous system. More commonly, cancer in other parts of the body spreads to the central nervous system. The spreading process, called “metastasizing,” starts when a cancerous cell breaks off from the original tumor and travels to another spot. There it may make new cells and, with them, grow into a malignant tumor. Cancer otherwise controlled by treatment may even escape to the brain and thrive there, perhaps because most of the usual cancer-fighting drugs cannot enter the brain easily.

My doctor said I have a primary tumor. Is that good or bad?

“Primary” simply refers to a tumor at its original site. For instance, if imaging shows a tumor in the spine that began there, doctors would call it a “primary spinal tumor.” They would dub any new tumors that might grow from it “secondary” or “metastatic.” Typically, metastatic cancer in the central nervous system results from wayward cells roaming there from other parts of the body, such as a lung, breast, or kidney. This can cause severe, even deadly, effects on the brain. To help patients live longer and better, doctors tend to aggressively treat tumors that spread to the brain.

What is meant by tumor grade? is it the same as its stage?

Some brain or spinal tumors receive a grade, a shorthand way of saying how likely they are to grow and spread. A doctor called a pathologist gives the grade after studying tissue from the tumor through a microscope. High-grade tumors not only look stranger than lower-grade ones, they act more aggressively. In contrast to grading, staging describes the actual degree of spreading, based on information from multiple sources. No standard staging method exists for brain or spinal tumors because they rarely spread beyond the central nervous system. However, tumors that have spread to the brain or spine are automatically deemed stage IV cancer.

I feel totally overwhelmed. What now?

Like you, many patients and caregivers feel overwhelmed by the challenges posed by these conditions. While everyone copes in their own way, learning about these tumors and sharing your burden with other people can help. With that in mind, we invite you to explore our site. We hope it brings you a dose of comfort and clarity. We wish you well.

Statistics

Each year, doctors find a brain tumor in over 200 Rhode Islanders and a spine tumor in even more. Nonetheless, these potentially devastating tumors can be considered “orphan diseases”: They afflict relatively few people compared to other medical conditions and so attract fewer resources to fight them. Consequently, as these patients and their families wage what may be the struggle of their lives, many of their needs go unanswered.

In Rhode Island:

Many tumors of the central nervous system stay under control for years with treatment. Indeed, some patients enjoy a full life after diagnosis. We wish we could say that everyone experiences good outcomes, but for some people, these tumors cause disability or death. How well a person fares after being diagnosed with a brain or spinal tumor depends on a number of things, including:

  • People who are grappling with a tumor of the brain or spine lack local support groups for interacting with others who understand the special challenges they face.
  • Patients and their relatives have few sources of Rhode Island-specific information to help them make crucial decisions, find top-quality treatment near home, and locate clinical trials.
  • Even middle-class, insured families can suffer financial hardship when costly medical bills pile up, particularly if the illness keeps a patient or caregiver from earning a paycheck.
  • Researchers could use more funding to identify risk factors within the state for these possibly disabling or life-threatening disorders.
  • Patients with brain or spine tumors await additional clinical trials of promising remedies since drug companies tend to focus on other, more common diseases.
A state that proclaims “hope” as its motto can do better than this. The Rhode Island Brain and Spine Tumor Foundation (RIBSTF) puts hope to work for patients and their loved ones. We strive to make a big difference in the smallest state by offering information, inspiration, support, and practical help for Rhode Islanders who have been affected by these tumors.

Symptoms

The symptoms below might point to a brain tumor. We stress the word “might” because other, more common, disorders can also cause many of them. All the same, we urge anyone who is experiencing any of these symptoms for no clear reason to seek medical care soon:

Symptoms often seen in patients with brain tumors include:

Many tumors of the central nervous system stay under control for years with treatment. Indeed, some patients enjoy a full life after diagnosis. We wish we could say that everyone experiences good outcomes, but for some people these tumors cause disability or death. How well a person fares after being diagnosed with a brain or spinal tumor depends on a number of things, including:

  • Headaches that may come on or worsen at certain times, such as when waking up, changing position, or straining
  • Nausea or vomiting
  • One or more seizures, which might cause brief bouts of twitching, twisting, or unconsciousness
  • Trouble speaking or understanding language
  • Lessened ability to think, concentrate, or remember
  • Personality or mood changes
  • Weakness
  • Numbness or tingling
  • Inability to move part of the body
  • Vision problems, including blurriness, seeing double, and blindness
  • Hearing trouble, from ringing or buzzing in the ear to hearing loss
  • Abnormal movements, new clumsiness
  • Dizziness or poor balance

Brain tumors can also cause other symptoms, such as:

  • Unexplained tiredness or lack of drive
  • Odd appearance of one or both eyes
  • Unintended weight loss or gain
  • Altered breathing or pulse
  • Excessive growth of all or part of the body, or in children, slowed overall growth
  • Swallowing trouble

Some symptoms affect women only:

  • Flow of breast milk not due to recent pregnancy or breast-feeding
  • Changes in monthly bleeding unrelated to menopause

Other hints of a possible brain tumor in men:

  • Breast development
  • Impotence

Remember, most people who are experiencing symptoms on this list do not have a brain tumor. Even so, seeking treatment could save the lives of those who do; it can give peace of mind to those who do not. To learn about next steps, please see our diagnosis page.