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Staging and Prognosis Factors for Childhood Spinal Cord Tumors

Staging and Prognosis Factors for Childhood Spinal Cord Tumors

Childhood Spinal Cord Tumor Cancer – Stages and Prognosis

Staging and Prognosis Factors for Childhood Spinal Cord TumorsThe central nervous system (CNS) is composed of the brain and the spinal cord, a delicate and sensitive column of nerves protected by the boney vertebrae of the spine. Statistically, CNS cancers are all grouped together as “brain and spinal cord tumors”, but of course in reality, there are a number of different and distinct types of spinal cord tumors, and each specific tumor requires a unique treatment approach and carries its own outlook for long-term survivorship.

When diagnosing cancer in either children or adults, oncologists usually differentiate between malignant (cancerous) cell growths or benign (non-cancerous) tumors. This distinction is much less important for spinal cord tumors, however. First, spinal cord tumors may spread within the CNS but rarely spread into other organs. Second, both malignant and benign tumors can be extremely life-threatening. As the tumor grows, it can press on and potentially restrict critical tissues of the CNS. Thus, both malignant and benign tumors can cause similar symptoms and have similar prognosis factors; both may require an aggressive treatment approach.

There is another critical difference between spinal cord tumors and other types of childhood cancer, also related to diagnosis: staging. When diagnosing most types of childhood cancer, oncologists will determine the cancer’s stage, or how far it has spread beyond the original point of growth. However, staging is not usually appropriate for spinal cord tumors, because as noted above, they do not, in most cases, spread into other organs or body systems. Instead, when determining an appropriate treatment option for a spinal cord tumor, oncologists will focus on key “prognosis factors”.

Key Prognosis Factors for Spinal Cord Tumors

Rapid advances in our knowledge of the central nervous system, as well as in available medical technology, mean that treatment options for children coping with a spinal cord tumor are more focused, more powerful, and more effective than ever before. And for many children, this means that the prognosis, or outlook, is excellent: statistically, about 75% of children with a tumor of the central nervous system are likely to survive more than 5 years.

However, a very basic statistic about 5-year survival rates hides a great deal of variation between specific types of tumors. In fact, each child’s long-term prognosis depends on a unique assessment of his or her key prognosis factors. These prognosis factors determine the unique treatment approach appropriate for your child’s unique diagnosis. In general, the key prognosis factors for most types of spinal cord tumors include:

  • The type of tumor
  • The size of the tumor at diagnosis
  • The location of the tumor at diagnosis
  • The “grade” of the tumor, or how quickly it is growing (grade I and II tumors usually grow slowly; grade III and IV tumors are more invasive)
  • How much, if any, of the tumor can be removed with surgery
  • Whether the tumorous cells have particular gene changes (mutations)
  • Whether the tumor has spread to other parts of the CNS
  • Whether tumorous cells have spread beyond the CNS
  • The child’s age at diagnosis
  • The child’s functional abilities as impacted by the tumor at diagnosis

If your child has been diagnosed with a spinal cord tumor (whether benign or malignant), his or her oncologist will help you understand all of these prognosis factors as they relate to your child and his or her specific type of tumor. While the general guidelines listed here and in other similar literature are important, they are just that: general. Only your child’s oncology team can determine your child’s key prognosis factors and the implications of those prognosis for late effects and long-term survivorship.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Gold Ribbon Hero: Kaydence

Meet Kaydence, a donkey-loving 6-year-old diagnosed with Acute Lymphoblastic Leukemia.49203532_336420513753405_4458034366571872256_n

In the summer of 2018, Kaydence began bruising easily and looked exhausted. Her mother, Tarah noticed her color was off and on the night of July 4, 2018, she had a gut feeling that something was wrong. After getting labs done, the ER doctor came in and said, “I’m going to be honest – I don’t have good news. She’s got leukemia and if you waited another day – it would have been too late.” At the time of diagnosis, Tarah was eight and a half months pregnant with baby number five. A port was placed the next day.

Induction therapy started quickly after diagnosis and on July 17, 2018, Tarah was in the hospital delivering her fifth child when she received a phone call from her husband.   He rushed Kaydence to the emergency room with a fever. Three hours later, Tarah received a call saying, “This is childlife. Dad had to step away for a minute. What do you know?” In disbelief, Tarah’s mind started spinning. “What do you mean, what do I know?”

Tarah was immediately wheeled down to the emergency room to see her daughter lifeless on the table surrounded by doctors. “Kaydence had to be resuscitated for 15 minutes,” said the doctors. Kaydence’s intestines and stomach had ruptured and the doctors feared she wouldn’t make it through the night. Kaydence survived the night and was stable enough for a CT scan but not 0-7surgery. After reading the scans, doctors determined that her intestines and stomach were severely damaged but no holes were present saying that she might actually recover. They spent 10 days on life support in the intensive care unit.

Kaydence has persevered through many challenges during her treatment for ALL. In October 2018, after a poor response to the normal chemotherapy treatment, her family decided to proceed with CAR-T therapy. During the infusion, Kaydence had a very rare anaphylactic reaction to the preservative in the cells. She also experienced tumor lysis with lymphodepleting chemotherapy before infusions.

She’s had to re-learn how to stand, walk, use her hands and fingers, potty train and use words. She was on dialysis because of poor kidney function and she’s beat septic shock and e. Coli. Miraculously, even though Kaydence underwent 15 minutes of CPR, she showed no signs of brain damage or evidence of her ever needing CPR. Her ribs were not broken and her heart was not damaged.0-11

As of March 15, 2019, Kaydence said that her bone marrow is MRD-negative and she has since started school! She is continuing to paint and craft and enjoy her family.

Follow Kaydence’s story on Facebook at @TeamDonkeyStrong

For more information about Acute Lymphoblastic Leukemia: https://www.acco.org/childhood-leukemias/

Donate to help kids like Kaydence: http://www.acco.org/donate

 

ACCESS Global Initiative to Improve Availability of Childhood Cancer Medication

ACCO’s CEO, Ruth Hoffman and Access to Childhood Cancer Essentials (ACCESS) co-founder AvramLocal-Patient-Access
Denburg worked on a global initiative that is improving the availability of cancer related medications for children.

Childhood cancer has no borders; yet, sadly childhood cancer medicines do,” said Ruth Hoffman, CEO of the American Childhood Cancer Organization, and co-founder of ACCESS. “A major barrier to treating and curing children with cancer in low- and middle-income countries is lack of access to essential medicines.

In January, a partnership with Teva Pharmaceutical Industries Ltd. led to emergency provisions of 13 cancer medicines included on the World Health Organization’s Essential Medicine List – more than 17,000 vials – to children with cancer in Ethiopia.

The request came as an urgent plea to Ruth Hoffman from parents of children with cancer being treated at Black Lion Hospital in Addis Ababa, Ethiopia. “We are so grateful to our colleagues at TEVA and to Giancarlo Francese, Head of Teva Access who quickly responded to this crisis situation,” said Ruth.

ACCESS is also launching an innovative research program to study the many critical barriers to childhood cancer drug access in Kenya, Rwanda, Uganda, Tanzania and Ethiopia.

Read more about Teva’s donation and ACCESS below.

Teva’s article about ACCESS’ donation: https://tevapharm.com/featuredstories/Moving_at_light_speed.aspx

Read the full press release here: https://www.acco.org/blog/accessinitiativetomedicine/

Learn more about ACCESS: https://accessentials.org/

 

Spinal Cord Tumors in Children: Treatment Options

Spinal Cord Tumors

Together, the brain and the spinal cord make up the central nervous system (CNS), which is responsible for controlling nearly all of our bodily functions. We often think of the spinal cord as the “back bone”, or the collection of vertebrae that we can feel running up the back. In fact, these vertebrae serve to protect the spinal cord, a delicate column of nerve tissues responsible for carrying critical informational signals between the brain and the body.

Spinal Cord Tumors in Children Treatment OptionsWhen classifying childhood cancers and discussing important statistics, tumors of the brain and tumors of the spinal cord are often lumped together as one broad grouping (although, of course, when diagnosing childhood cancer, each tumor is specified as a more specific “type”). And in general, treatment options for both spinal cord tumors and brain tumors are the same, usually consisting of some combination of

  • Surgery;
  • Radiation therapy; and/or
  • Chemotherapy

However, generally speaking, spinal cord tumors are often significantly more difficult to treat with surgery; therefore, for many (but not all) patients, radiation therapy and/or chemotherapy will play a larger role in the treatment of spinal cord tumors than it does for some of the more common types of brain tumors.

Radiation Treatment for Spinal Cord Tumors

Because of their location in the spinal cord, and how they grow and interact with the delicate nerves of the spinal cord, spinal cord tumors are—in general—more difficult to treat with surgery alone. In some cases, the tumor cannot be removed entirely, although surgery may be used to remove as much of the tumor as possible. In other cases, the location of the tumor makes it impossible to access the tumor safely; in other words, surgically removing the tumor may cause too much damage to the healthy tissue of the spinal cord.

Unfortunately, radiation therapy affects healthy tissue as well as tumorous tissue, although not as quickly. Therefore, every radiation therapy treatment is designed to maximize damage to the tumor—enough to destroy as many cancerous cells as possible and (hopefully) prevent the tumor from re-growing—while minimizing potential damage to healthy tissue. However, the short- and long-term side effects of radiation therapy are potentially dangerous, and therefore the risk of radiation therapy as a treatment tool must be weighed against the benefits it offers in the fight against childhood cancer. In general, as the risk of long-term side effects is higher in younger children, radiation therapy is usually not recommended for children under 3 except as a last resort. Your child’s oncology team will help you understand the risks and benefits of radiation therapy as a potential treatment option, to ensure that you are educated in the best treatment options for your child.

Treatment Options for Some Common Types of Spinal Cord Tumors

We will present some of the most common types of spinal cord tumors and their “recommended” treatment options here; however, it is important to remember that every child and every diagnosis is unique. Your child’s oncology team will develop an appropriate treatment specifically for your child.

  • Astrocytomas of the spinal cord: generally cannot be removed entirely with surgery. Surgery may be used to remove some of the tumor, followed by radiation therapy; some cases may require only radiation therapy.
  • Meningiomas: usually can be treated solely with surgery.
  • Ependymomas: generally can be removed through surgery, may be followed by with radiation therapy.
  • Choroid plexus tumors: benign papillomas are usually treated with surgery. Choroid plexus carcinomas are malignant, and while surgery can remove the tumor entirely, most oncologists will recommend following surgery with radiation therapy and/or chemotherapy.
  • Craniopharyngiomas: because these tumors usually grow very close to the pituitary gland, the optic nerves, and blood vessels critical to the brain, they are difficult to reach surgically. Surgery may be used to “debulk” the tumor (remove most of it); radiation therapy is the most common approach.
  • Germ cell tumors: surgery may be used to diagnose the type of germ cell tumor (germinoma, teratomas, and yolk sac tumors are the most common types), but can rarely remove it. Radiation therapy or a combination of radiation therapy and chemotherapy is the most common treatment approach.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit: