young adult support

Having cancer at a young age brings a unique set of medical and financial issues. Nearly 70,000 young Americans between the ages of 15-39 are diagnosed each year.

Young Adult Cancer

brain tumor quoteSomething will grow from all you are going through. And it will be you.-Unknown

Brain tumors in young adults are just as tragic as those in an older individual – but the ramifications and the imprint of the diagnosis and treatment can be very different.

The brain is still developing throughout an individual’s teenage years through their late twenties to early thirties. Disruption of neurological maturation at this stage creates various, more specific and more particular issues both for the patient’s symptoms and for recommended treatment.

According to the CBTRUS (Central Brain Tumor Registry of the United States), the incidence rate of Young Adult (YA) primary malignant and non-malignant brain and other CNS tumors is 10.71 cases per 100,000 for a total count of 54,388 incident tumors. The rate is higher for non-malignant tumors (7.47 per 100,000) than malignant tumors (3.24 per 100,000). Furthermore, an estimated 11,110 new cases of YA primary malignant and non-malignant brain and other CNS tumors are expected to be diagnosed in the US in 2017.

It should be noted that the ages for pediatric oncology and Young Adult oncology overlap, with pediatric slated from 0-19 years and YA from 15-39 years.  The American Cancer Society defines Young Adult as ages 20 – 39, however this age range varies depending on doctor and location.

Signs and Symptoms

Early symptoms of brain tumor cancer in Young Adults may first appear as those from more common illnesses or injuries, such as feeling run down, getting sick, or having bumps or bruises.

Common signs and symptoms can include:

  • Unexplained fatigue and loss of energy
  • Easy bruising or abnormal bleeding
  • Emotional fits
  • Ongoing pain in one part of the body
  • Raised intracranial pressure, which can cause frequent headaches, often with vomiting
  • Unexplained fever or illness that doesn’t go away
  • Interfere with message sent by affected part of the brain to other parts of the body
  • Problems with speech or comprehension
  • Sudden eye or vision changes
  • Balance or coordination issues
  • Changes in mood or mental clarity

Survival
Survival after diagnosis with a primary malignant or non-malignant brain tumor in the US varies significantly by age, histology and behavior. Five-year relative survival rates following diagnosis of a primary malignant brain and other CNS tumor (including lymphoma, leukemia, tumors of the pituitary and pineal glands,  and olfactory tumors of the nasal cavity) by age of diagnosis (1995-2013 data): Age 0-19 years: 73.8%, Age 20-44 years: 61.5%.

Survival after diagnosis with a non-malignant brain/other CNS tumor also varies. Five-year relative survival after diagnosis with a non-malignant brain or other CNS tumor is 90.4% in the US.

Prevalence of Brain Tumors in Young Adults
More than 700,000 people in the United States have brain and central nervous system tumors – with more than 10,600 such tumors diagnosed in teens and young adults each year.

Regrettably, nearly 500 of these individuals succumb to their disease annually.

Brain cancers are the most common cause of cancer deaths among teens and young adults. There are unique characteristics of the YA (15-39) age group and a wider variability in the types of brain tumors diagnosed within this age group. While the most common tumor types in adults are meningiomas and glioblastomas, there is much more diversity in the common tumor types observed in the adolescent and young adult population.

These young individuals are just coming into their own – finishing school, pursuing careers and raising families. The diagnosis of a brain tumor for them is particularly cruel and, to say the least, disruptive.

Brain tumors are:

  • The most common cancer among those age 0-19 (leukemia is the second).
  • The leading cause of cancer-related deaths in children (males and females) age 1-19 (leukemia is the second).
  • Estimated to be diagnosed in more than 4,600 individuals between the ages of 0-19 as a primary tumor this year.

Treatment for Young Adults

Pediatric oncologists specialize in treating childhood cancers but there are actually very few doctors who focus specifically on young adults with cancer, meaning it’s not always clear which type of doctor or treatment center is best. For the most part, young adults most often see pediatric oncologists while conferring with – or also being seen by – oncologists who specialize in adults.

Interestingly, treatments used on children and young adults with malignant brain tumors are more intense than those used for treating adults. In general, childhood cancers often respond better to chemotherapy as most forms of chemotherapy affect cells that are growing quickly – like brain tumors in children. Children’s bodies are also better able to recover from higher doses of chemotherapy.

The types of treatment for these cancers in young adults are the same as those used in other age groups. The choice of treatment depends mainly on the type and extent of the cancer. Sometimes more than one type of treatment is used.

More about treatment options

Cancer Treatment Team for Young Adults
Typically, young adults have a number of different types of doctors on their treatment team, depending on the type and stage of the cancer and the treatment options. The team may include:

  • Surgical Oncologists
  • Medical Oncologists: These doctors use chemotherapy and other medicines to treat adults with cancer.
  • Pediatric Oncologists: These doctors use medicines to treat cancers usually seen in children and young adults.
  • Radiation Oncologists: These doctors specialize in using radiation to treat cancer.
  • Nurse Practitioners (NPs) and Physician Assistants (PAs): These are nurses and other professionals specially trained and licensed to practice medicine alongside doctors.

Other specialists might include rehabilitation and physical therapists, nutritionists, and social workers. They provide help and guidance with the multitude of issues facing young adults and their families – such as treatment effects on fertility, education or employment needs, health insurance concerns, family planning, and financial issues.

Clinical Trials
Clinical trials are carefully controlled research studies done with patients who volunteer for them, in the hopes of finding better treatments and procedures.

Young adults tend to have the lowest enrollment rates of any age group. This may be due to lack of knowledge about clinical trials, patient or family reluctance to enter clinical trials, and financial issues. Unfortunately, low enrollment in clinical trials is a main reason for the lack of progress in treating cancers in young adults.

More about clinical trials

Late and Long-term Effects of Cancer Treatment in Young Adults
Risks depend on a number of factors, such as tumor type, treatments and doses being used. Young adults are still growing and developing organs and body systems, making them more sensitive to treatments like chemo and radiation therapy.
This does not counter the fact that more aggressive treatment in young adults is more effective. It just means that the side effects – during and post-treatment – may seem more exacerbated.

Late Effects can involve:

  • Impaired fertility in both male and female patients
  • Increased risk of developing another cancer later in life
  • Heart or lung problems from some chemo drugs or radiation to the chest
  • Hearing or vision problems from some chemo drugs or radiation to the head
  • Problems with other organs (such as the kidneys or bones)
  • Pain or swelling in parts of the body
  • Hormone deficiencies

Aftercare for Young Adults

Just as the treatment of cancer in young adults requires a specialized approach, so does aftercare and watching for late effects. Careful follow-up after cancer treatment allows doctors to find and treat any late effects as early as possible. The follow-up schedule depends on many things, including the type of tumor, treatments used, and risk of late effects from those treatments.

It’s very important to discuss possible long-term complications of treatment with your health care team, and to make sure there’s a plan to watch for these problems and treat them. Your team can help you know what to watch for.

The Children’s Oncology Group (COG) is the world’s largest group of doctors and other health professionals devoted to treating cancer in children and teens.

It’s certainly normal for the patient to want to put the tumor and its treatment behind and to get back to a life that doesn’t revolve around tumors or brain cancer. But it is imperative that the patient continues follow-up with their health care team. It is a key part of this process and gives the best chance for a full recovery and long-term survival.

Special Issues for Young Adults With Brain Tumors
Young adults with cancer face many challenges, from the first onset of problems through treatment and beyond.

FINANCIAL CONCERNS

Patients in this age group are often not familiar with other types of financial resources that might be available to them beyond their own or their parents’ health insurance.

The illness and treatment can also affect the individual’s ability to work. Doctor visits, appointments for exams and treatments, time needed to recover from treatment, and later follow-up visits can all make it hard to work at a time when many young people are just starting their careers. It’s important for people to understand their rights as an employee when it comes to being diagnosed with cancer, as well as how to work with their employer to best accommodate both parties. more about financial advice

DELAYS IN DIAGNOSIS

Cancers are often found later in young adults than they are in other age groups, because individuals in this age group are either scared to acknowledge their symptoms or simply don’t know to whom or where to turn.

Some young adults themselves can be challenging as patients. They might place a higher priority on other things going on in their lives rather than treating the cancer, resulting in missed appointments for tests or treatments. This might be out of a misunderstanding of the seriousness of the cancer, resentment over having to deal with the cancer, or even fear of the unknown.

This can complicate treatment if the cancer has grown large or spread by the time it’s found.

TREATMENT ISSUES

Young Adults are often caught between seeing doctors who specialize in treating children with cancer and doctors who mainly treat older adults. Not all doctors are familiar with treating cancers in this “tween to middle age” group, which can often have unusual features. Communication between the patient and doctors can also be an issue, as many cancer doctors are more comfortable dealing with younger or older age groups.

This can also lead to young adults feeling isolated and out of place. Most patients in doctor’s offices or cancer centers are either older adults or younger children, so young adults aren’t likely to see many people their own age who are dealing with the same issues they are.

It’s very important for people to connect with others who understand what they’re going through and can relate to them on their level. Many support groups – both in person and online – now exist for young adults with brain cancer who are looking to connect with others in similar situations.

SOCIAL AND EMOTIONAL ISSUES

Some of the greatest challenges faced by young adults with brain tumors or brain cancer come from the fact that this tends to be a time of great change in a person’s life, which comes with many of its own stresses. Young adults are often establishing their own identity at this time and developing their own social, emotional, and financial independence. A diagnosis of cancer can throw all of these things into disarray.

During treatment, patients and their families tend to focus on the daily aspects of getting through it and beating the cancer. But a number of emotional concerns can come up both during and after treatment. Some of these can last a long time. They can include things like:

  • Dealing with physical changes (hair loss, weight gain, scars from surgery, etc.) that can result from the cancer and/or its treatment
  • Worrying about the tumor returning or developing new health problems
  • Resenting having cancer and having to go through treatment when others do not
  • Having concerns about how to tell friends or colleagues and fear of being treated differently or discriminated against by friends, classmates, co-workers or employers
  • Having fears and concerns about dating, marrying, and having children

No one would choose to have cancer, but for many cancer survivors, the experience can be positive in the long term, allowing for clearer setting of priorities and helping to establish strong personal values. Other survivors may have a harder time recovering, adjusting to life after cancer, and moving on.

It’s normal to have some anxiety or other emotional reactions after treatment, but feeling overly worried, depressed, or angry can affect many aspects of a young adult’s growth. It can get in the way of relationships, school, work, and other parts of life. With support from family, friends, mental health professionals, and others, cancer survivors can thrive in spite of the challenges they’ve had to face.

Causes

We don’t yet know the causes of brain tumors. Research continues.
 
It has been sown that young people with rare genetic conditions that run in families, such as neurofibromatosis type 1 and neurofibromatosis type 2, have an increased chance of developing a brain tumor.

Mobile phones, power lines and certain viruses have all been suggested as possible causes of brain tumors. Unfortunately, there has been no strong evidence for any of them. 

To assuage any feelings of fear, anxiety or guilt, it is crucial to remind YA patients that nothing they’ve done has caused their disease.

brain tumor quoteI am not afraid of storms for I am learning how to sail my ship.-Louisa May Alcott

American Cancer Society

The American Cancer Society’s mission is to save lives, celebrate lives, and lead the fight for a world without cancer.
www.cancer.org/cancer/cancer-in-young-adults.html

CancerCare for Young Adults

CancerCare provides free, professional support services for young adults affected by cancer, as well as cancer information and additional resources.
www.cancercare.org/tagged/young_adults

CBTRUS

The Central Brain Tumor Registry of the United States, CBTRUS, is a not-for-profit corporation committed to providing a resource for gathering and disseminating current epidemiologic data on all primary benign and malignant brain and other central nervous system tumors for the purposes of accurately describing their incidence and survival patterns, evaluating diagnosis and treatment, facilitating etiologic studies, establishing awareness of the disease, and ultimately, for the prevention of all central nervous system tumors.
www.cbtrus.org

Children’s Oncology Group

To cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care.
www.survivorshipguidelines.org

Critical Mass

A community–powered advocacy organization on a mission to transform the care and treatment of young adults with cancer. Critical Mass is the Young Adult Cancer Alliance, where unifying voices and eliminating barriers are their mission and passion. Critical Mass is a group of non-profits, medical institutions, patient advocacy groups, government agencies, clinicians, researchers and dedicated individuals – all united by a shared passion to improve the lives of adolescents and young adults with cancer.
www.criticalmass.org

Dana Farber Cancer Institute

The Young Adult Program at Dana-Farber (YAP@DFCI) is part of an international initiative to recognize and address the unique circumstances related to lifestyle, work, school, family life, and emotional development that young adults face when living with cancer. YAP@DFCI provides emotional support services, opportunities to meet other young adults receiving treatment, and educational programs aimed at enhancing knowledge and self-advocacy skills.
www.dana-farber.org

Hope For Young Adults With Cancer

Hope For Young Adults With Cancer is passionate about making the lives of young adults, ages 19-40, living with cancer a little bit easier. Their mission is to connect peers in the fight to provide direct financial support along with a social network and outlet for those battling, surviving and living with cancer.
www.hope4yawc.org

Macmillan. Cancer Support

Macmillan.  Cancer Support
Macmillan offers support for anything from money concerns and work related issues to much needed emotional support.
www.macmillan.org.uk/cancerinformation/teensandyoungadults/cancertypes/braintumours/braintumours.aspx

Stupid Cancer

Stupid Cancer is the largest charity that comprehensively addresses young adult cancer (age 15-39) through advocacy, research, support, outreach, awareness, mobile health and social media.  Our innovative, award-winning and evidence-based program and services serve as a global bullhorn to propel the young adult cancer movement forward.
www.stupidcancer.org

The Children’s Oncology Group

The Children’s Oncology Group provides important information for children and their families from the time of diagnosis, through treatment and following cure.
www.childrensoncologygroup.org/index.php/patients-and-families-section

The National Comprehensive Cancer Network (NCCN)

The National Comprehensive Cancer Network (NCCN), a collection of many of the nation’s leading cancer centers, also has follow-up test recommendations for teen and young adult cancer survivors. While the guidelines are written for health professionals, a patient version (which includes information on many aspects of being diagnosed with cancer as a teen or young adult) is also available.
www.nccn.org/patients/guidelines/aya/index.html

Young Cancer Spouses

This site features resources for spouses including practical caregiving tips, stories from caregivers, connection with other caregivers, recommendations, and resource regarding financial and legal issues.
www.stupidcancer.org/ycs/

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