Life With Cancer Resource Center

Here you can find additional helpful resources to learn more about a cancer diagnosis, helpful tips, and support to cope with its impact on your life and the lives of your loved ones:

 


For All

(Click here for the Spanish Dictionary of Cancer Terms)


For Patients and Survivors

Helpful Tips and Worksheets

Helpful Web Sites

  • National Ovarian Cancer Coalition: Awareness and education about ovarian cancer; committed to improving the survival rate and quality of life for women with ovarian cancer.

Inova Cancer Services – Specialty Programs
Inova Cancer Services is nationally recognized for its specialized oncology programs. These state-of-the-art services are found only at Inova Health System and other select, top-rated cancer centers in the United States.

  • Inova Breast Care Institute
    At Inova Breast Care Institute, our commitment is to provide expert care for you, every step of the way, through treatment and recovery. Our multidisciplinary team of more than 80 experts provides a full range of comprehensive services and programs, from diagnosis through treatment and recovery. With access points throughout Northern Virginia, Inova provides breast cancer care for more than 1,000 women each year – more than any other healthcare provider in the area.
  • Cancer Genetic Counseling Program
    You may wish to consider cancer genetic counseling to determine the risk of hereditary cancer in your family. Most adults with cancer are not genetically predisposed to developing malignancy, but a small number of families do carry a hereditary predisposition. The Genetic Counseling Program is available to all Inova Cancer Services patients and their families. Call 703-208-6026 to schedule an appointment. 
  • Center for Advanced Endoscopy
    The Center for Advanced Endoscopy at Inova Fairfax Hospital is the first of its kind in Northern Virginia. Our physicians utilize some of the most innovative endoscopic technologies available to successfully treat both cancerous and non-cancerous diseases of the digestive tract. conditions and diseases that once required traditional surgery.
  • Hepatobiliary Tumor Clinic
    This comprehensive and coordinated clinic draws together a multidisciplinary team of specialists to deliver the best possible outcomes to adults and children with tumors of the liver, bile duct and pancreas. The Hepatobiliary Tumor Clinic is the only one of its kind in Northern Virginia and is located at Inova Fairfax Hospital.
  • Musculoskeletal (MSK) Tumor Program
    The unique and specialized Musculoskeletal (MSK) Tumor Program brings together a top-notch team of physicians and other clinicians who are highly qualified to diagnose, treat and rehabilitate adults and children dealing with rare bone and soft tissue tumors. The MSK Tumor Program draws patients from a wide area and is located at Inova Fairfax Hospital.
  • Stem cell and bone marrow transplantation
    Patients with certain diseases such as lymphoma, leukemia or multiple myeloma may be referred to the experts at our Transplant Center for a bone marrow or stem cell transplant. Inova Health System pioneered the first autologous bone marrow transplant in the area in 1989 and continues as a leader in transplant procedures. Our transplant services are located on the campus of Inova Fairfax Hospital
  • Thoracic Oncology Program
    This fully-integrated, multidisciplinary program focuses on the unique complexities and needs of patients dealing with lung cancer and esophageal cancer. State-of-the-art diagnostic services and the latest treatment modalities, including minimally invasive options, are offered by a team of expert specialists unparalleled in the Washington, D.C., region. For more information, call 703-776-3777.
  • Mesothelioma Help - Mesothelioma Help provides patients and caregivers with valuable tools on asbestos exposure and mesothelioma. The site features a 24/7 live chat, lie Q & A sessions, scholarship contest, and much more: www.mesotheliomahelp.org.

  • The Mesothelioma Cancer Alliance (MCA)
    MCA is an online resource dedicated to serving mesothelioma victims and their families. The MCA provides comprehensive information regarding asbestos exposure, disease development, treatment and an expert blog. We are solely an online resource at this time but we do have information specific to the DC area:

Additional Resources

Health Sciences Library at Inova Fairfax Hospital
The Health Sciences Library at Inova Fairfax Hospital provides access to clinical and managerial literature, computerized databases, patient education, and other resources needed to support patient care, quality improvement, continuing education and research.

The library also supplies books and videotapes, including the Life with Cancer Family Resource collection that is available for in-library or home use. A computer workstation provides access to a selection of health-related databases, CD-ROMs, and other computer education programs.

The library is located in Inova Fairfax Hospital on the first floor of the connector corridor between the hospital tower lobby and the Inova Women's Center. The hours of operation are Monday through Friday from 8 a.m. to 8 p.m. and Saturday from 9 a.m. to 5 p.m. If you have any questions, you can phone the library at:

Main desk: 703-776-3234
Reference: 703-776-3357
Fax: 703-776-3353

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Resources for Pediatric Oncology Patients and Their Families

There are numerous resources and support programs available to help you and your family cope with the cancer diagnosis and treatment journey. Resources commonly referred to are listed below. Please contact your hospital or outpatient social worker for information and eligibility requirements for these and other resources to meet your particular needs.

Web-based Information/Educational Resources Regarding Diagnoses and Treatment:

  • www.curesearch.org --- by the Children’s Oncology Group, information on all diagnoses, late effects, survivorship.
  • www.chemocare.com¬† --- descriptive information about every aspect of chemotherapy, managing side effects, etc.
  • www.nci.nih.gov --- National Cancer Institute, latest information regarding treatment, clinical trials, research.
  • www.clinicaltrials.gov --- National Institutes of Health sponsored website.
  • www.beyondthecure.org --- Sponsored by the National Children’s Cancer Society, information on survivorship, advocacy, school issues, insurance, building your own treatment summary, etc.
  • www.Acor.org ---online cancer community specific to each type of cancer
  • www.acco.org American Childhood Cancer Organization ‚Äďlargest publisher of books for pediatric cancer
  • www.rare-cancer.org ‚Äďinformation and support for rare cancers
  • www.cancercare.org ‚Äďresources on pediatric cancer
  • www.ped-onc.org/ccorg ---lists local childhood cancer groups that provide support for families of childhood cancer in their area

Books and CDs

  • American Childhood Cancer Organization (formerly Candlelighters)---www.acco.org---provides free books on request including:¬† Childhood Leukemia: A Guide for Families, Friends, and Caregivers;¬† Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers;¬† Childhood Cancer Survivors: A Practical Guide to Your Future; Chemo, Craziness & Comfort, My Book about Childhood Cancer, (practical advice for children 6-12, easy to read text); and Educating the Child with Cancer; Childhood Brain and Spinal Cord Tumors; The Amazing Hannah, (also in Spanish), picture book for pre-schoolers, 1-5, showing real life treatment situations; Oliver’s Story: For Sibs of Kids With Cancer, for 3-8 year old siblings, answers questions and offers constructive ways on how sibs can offer support.
  • Children’s Brain Tumor Foundation--- www.cbtf.org--- provides information, support, and free books, including A Resource Guide for Parents of Children with Brain or Spinal Cord Tumors
  • Starlight Starbright Children’s Foundation---www.starbright.org---books, videos and games for children and teens coping with cancer, chemotherapy, returning to school.

 

Support Groups and Programs

  • Life With Cancer---www.lifewithcancer.org--- Monthly Calendar of classes, support programs and events, plus website with several topics translated into multiple languages. For registration for children’s programs, contact Children’s Program Mgr @ 703-698-2536:
    1. Super Sibling Support & Kids with Cancer Days, 4 -6 times per year including many Monday school holidays; all day program of activities, support, and fun
    2. Teen Activity & Meet and Greet Groups---different venues such as bowling, mini-golf, eating out
    3. Pediatric Oncology Parent Night---monthly (4th Tuesdays) support and education programs for parents speakers, varied topics; co-sponsored by the Leukemia and Lymphoma Society and DC Candlelighters; dinner and separate activity group for children ages 5 ‚Äď 12 provided
    4. Individual and family counseling, play therapy, call 703-206-5433 to schedule an appointment
    5. Annual (July) “I’m Cured‚ĶNow What? Conference for Teen and Young Adult Survivors of Childhood Cancer” focusing on late effects and healthy living after treatment for survivors 17 and over & parents. Awards several $1000 college scholarships in conjunction with attending each year.¬†
    6. Young Adult Support Group---monthly, for 18 - 39
    7. Numerous classes open to parents and adults on stress management and complementary therapies
  • D.C. Candlelighter’s of the Metro Area---offers financial assistance (up to $500), gift bags for newly diagnosed families, monthly support programs and books and resources published by the national Candlelighter’s organization.¬† Co-Sponsors the annual Holiday Party at the Hospital; Halloween Party, Family Bingo, Mother/Daughter Spa and Father/Son Nights at Life with Cancer. dccandlelighters@gmail.com; www.dccandlelighters.org.
  • Leukemia and Lymphoma Society---“First Contact Program” matches children/parents via phone for support; contact 703-960-1100 X231.
  • Songs of Love---www.songsoflove.com, 1-800-960-SONG---provides personalized songs on child’s own CD written and performed by talented artists with input from the child’s life. Spanish available.
  • Casey Cares --- www.caseycares.org Provides tickets to local excursions and events, birthday celebrations, etc.
  • Still Brave --- www.stillbrave.org ¬†Provides emotional, financial and practical assistance to children and families with cancer
  • Help with design of free personalized websites:

 

Financial Resources

  • SSI -- Supplemental Security Income under Social Security ¬†for children who meet disability and family income criteria. ¬†Provides a monthly benefit and automatic link to Medicaid.¬† Social Security Administration Hotline 1- 800-772-1213.
  • EDCD Waiver -- Elderly and Consumer Directed Waiver provides “respite” and nursing care for children (and adults) with medical conditions/disabilities to prevent institutionalization.¬† “Waiver” takes into account child’s income and assets, not parents, in consideration for Medicaid as secondary insurance.¬† Must use “respite” care to qualify for Medicaid benefit.¬† Respite can be provided by a family member or agency personnel. Contact social worker for more information.
  • National Children’s Cancer Society -- www.thenccs.org --provides financial help to eligible families with transportation reimbursement and expenses for lodging at treatment centers away from home, some costs of bone marrow searches for transplant, and other categories of assistance.¬† Requires Social Work referral, application, liquid assets less than $5,000, copies of bank statements.¬†
  • Leukemia and Lymphoma Society -- provides $150 per year for out of pocket chemotherapy, drug, and mileage expenses; offers co-pay assistance for some diagnoses, www.lls.org/nca
  • Local, regional and national charities (The Quadrino Foundation, Special Love, Inc, Still Brave, Growing Hope, DC Candlelighters, Go4theGoal, B+ Foundation) provide emergency assistance with various household and non-medical expenses. Maximum grant requests range from $500 - $700.¬† Contact Social Worker for more details.
  • Joe Cassella Foundation -- Helps with pediatric medical bills when there is no or limited insurance coverage and financial need.
  • National Foundation for Credit Counseling, 1-800-388-2227; www.cccs.org. Local financial care centers, free or low cost. Also see Consumer Credit Counseling Services, many local offices @ 800-747-4222; Northern Virginia Family Services, 703-385-3267 (Fairfax), 703-490-3646 (Prince William); or Virginia Cooperative Extension, 703-324-5369 (Fairfax).
  • College Scholarships for Cancer Survivors---see comprehensive lists on www.curesearch.org or www.I’mtooyougforthis.org


Camps and Retreats/Special Events

  • Special Love, Inc.--- www.specialove.org. 1-888-930-2707. Sponsors summer camp for patients 7-17, Brass Camp for brothers and sisters, Fantastic Friends camp, weekend getaways for parents and the whole family; teen, ski, and young adult weekends; numerous other activities throughout the calendar year at the 4-H facility in Front Royal Virginia, newsletter.
  • Believe in Tomorrow--- www.believeintomorrow.org ---sponsors local “free” beach and mountain retreats and special “adventures” for the whole family.
  • Camp Friendship--- www.cjcf4kids.org -- sponsored by the Carol Jean Cancer Foundation, located in Maryland; several week long camping sessions per year plus other programs for siblings, teens, and parents.
  • Children’s Oncology Camping Association International (C.O.C.A.), www.coca-intl.org, provides information on pediatric oncology camps throughout the country.
  • Camp Make a Dream ---www.campdream.org “free” camps for kids, teens, young adults with cancer in Montana.
  • Camp Sunshine --- www.sunshine.org “free” year round camp programs for multiple diagnoses for the whole family in Casco, Maine
  • Growing Hope--- local Foundation, sponsors annual Spring Peds Oncology Picnic, trips to the Circus (March and October), King’s Dominion (Sept.); supports annual Holiday Party, and Life with Cancer’s “I’m Cured‚ĶNow What?” Survivorship conference with college 10 $1000 college scholarships www.ourgrowinghope.com


Special Wishes

  • Make-A-Wish Foundation -- www.wish.org -- grants wishes for travel, meeting celebrities, spending sprees, etc. for any child with a life threatening illness, 2 ¬Ĺ -17.
  • Children’s Wish Foundation International--- www.childrenswish.org ---grants first and “second” wishes (on a limited basis).
  • A Special Wish Foundation, Inc., www.spwish.org, grants wishes to children up to age 21.
  • Kids Wish Network, www.kidswishnetwork.com, 3-17, may grant “second” wishes if more than 3 years have passed since child received first wish.


School Issues

  • Homebound instruction ---Schools are mandated to provide teachers for homebound instruction, grades 1-12 in core subjects. Requires medical documentation and the commitment of a parent to be present during scheduled teacher visits.¬† Many teachers will make hospital visits as well. Social worker or Child Life will make referral.¬†
  • Home schooling -- an option for parents who wish to provide the instruction themselves. Contact National Home Education Network @ www.nhen.org for information, group listings, newsletter.
  • IEPs/504 plans ---many children treated for cancer will need evaluations for special education and/or accommodations during or following treatment due to physical and/or learning difficulties.
  • Child Find and Early Intervention Programs ---out patient andhome-based developmental evaluations and therapies (physical, occupational, speech, cognitive) for infants through pre-schoolers with disabilities or suspected delays. Contact social worker for appropriate referral.
  • School Re-Entry ---excellent web resources for information on late effects, school re-entry, advocacy include:¬† ¬†www.children-cancer.org; www.cancersourcekids.com; www.cancer.org (ACS website); www.ldonline.org; (provides comprehensive and interactive guide to learning disabilities for parents, students and teachers); www.leukemia-lymphoma.org (sponsors teleconferences and workshops on school re-entry); www.candlelighters.org; www.starbright.org
  • Annual “Back to School Conference”---sponsored by the Leukemia and Lymphoma Society of the National Capital Area for parents, teachers, principals, school nurses, hospital and clinic personnel on all aspects of school re-entry and late effects.¬† Appropriate for all diagnoses,
    • K ‚Äď 12.¬† Usually held in November.¬† ¬†¬†
  • Hope Cam ---free ¬†IPAD or Tablet for children on homebound instruction, plus high speed internet with skype link-up to child’s classroom. Started by local peds oncology parent to help homebound children/teens stay connected to friends and teachers; contact Rachel Wheat at 703-364-5607 or www.hopecam.org
  • Parent Educational Advocacy Training Center---(PEATC) statewide and local organization dedicated to providing information and guiding parents through the IEP process, denials and appeals---703-923-0010.

          
Wigs and Hats

  • Hip Hats -- www.hiphat.com ---partial (breathable) wigs made of real hair that can be worn with caps matched to girl’s hair color, length and texture.¬† Financial assistance available to help with purchase.
  • Locks of Love -- www.locksoflove.org --provides hairpieces to children younger than 18. Accepts hair donations.
  • Pink Heart Funds --- www.pinkheartfunds.com ‚Äďprovides free wigs to children with physician referral.¬† Shop online.¬† Contact Social Worker for details.
  • Ellie’s Hats --- www.ellieshats.org --started by teacher of local child with leukemia, organization provides free hats year round to kids with cancer
  • Caps for Kidswww.capsforkids.org provides a cap autographed by the athlete, entertainer or other notable celebrity of their choice.


Transportation To and From Treatment/Other Treatment Centers

  • Logisticare---rides to doctors, clinic/hospital appointments for Medicaid eligible children, 1-866-386-8331.
  • Corporate Angels---www.corporateangelnetwork.org---provides free air travel to treatment centers using empty seats on corporate jets. Open to all cancer patients, bone marrow donors who are ambulatory and not in need of medical support while traveling.
  • AirlifeLine---www.airlifeline.org---free air travel on private planes to treatment centers anywhere in the U.S., using pilots who donate their services to the angel flight network.¬† Patients must not be in need of medical support in-flight.
  • National Patient Travel Center---www.patienttravel.org---arranges air medical transportation to any specialized treatment center for diagnosis and treatment, regardless of financial need.


Employment/Insurance Help and Advocacy

  • FMLA---Family Medical Leave Act---provides up to 12 work weeks of unpaid leave to care for family member with a serious illness without threat of loss of employment. Contact employer or Dept. of Labor website @ www.dol.gov/esa/whd/fmla.
  • ACA Affordable Health Care --- www.healthcare.gov affordable health care options including subsidized insurance in some cases for children and families; protections against pre-existing conditions
  • Patient Advocate Foundation---1-800-532-5274---www.patientadvocate.org--- provides assistance with insurance problems and works to resolve coverage and benefit issues.
  • COBRA---federal act which allows continued health insurance coverage due to loss of job, job relocation or reduced work hours on a temporary basis (18 months) at the employee’s expense. Contact EBSA Hotline @ 1-866-444-EBSA with questions.
  • HIPPA---federal act designed to protect access to health insurance when starting a new job or changing jobs, or when buying individual coverage if you lose coverage under an employer group plan.¬† Contact State Insurance Commissioner or Centers for Medicare/Medicaid website @ www.cms.hhs.gov/hippa.
  • “Pro Bono” (free) Legal Help---for those diagnosed with leukemia, lymphoma, and other blood disorders through the Leukemia and Lymphoma Society, National Capitol Area; 703-960-1100, X231.
 

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For Young Adults with Cancer:

  • Inspire - Life with Cancer Support Community.
  • Planet Cancer: A community of young adults with cancer.
  • I’m Too Young for This: Empowering young adults with cancer.
  • Fertile Hope: A national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.
  • CampMakADream: Providing  a medically supervised, cost-free Montana experience, in an intimate community setting, for children, young adults and families affected by cancer.
  • Young Adult Cancer Canada: Providing inspiration, information and support for young adults with cancer.
  • Young Survival Coalition: Young women united against breast cancer.
  • Everything Changes: A comprehensive book about cancer in your 20's and 30's.
  • Imerman Angels: One-on-One Cancer Support: Connecting cancer fighters, survivors & caregivers.
  • Northern Virginia Therapeutic Riding Program: The Northern Virginia Therapeutic Riding Program (NVTRP) is a non-profit organization dedicated to enriching the lives of children and adults with disabilities, youth-at-risk, and veterans through the challenging, physically-active sport of horseback riding. Horseback riding has been shown to be one of the most beneficial forms of recreation for people with all types of disabilities.


Additional Resources

Health Sciences Library at Inova Fairfax Hospital
The Health Sciences Library at Inova Fairfax Hospital provides access to clinical and managerial literature, computerized databases, patient education, and other resources needed to support patient care, quality improvement, continuing education and research.
The library also supplies books and videotapes, including the Life with Cancer Family Resource collection that is available for in-library or home use. A computer workstation provides access to a selection of health-related databases, CD-ROMs, and other computer education programs.

The library is located in Inova Fairfax Hospital on the first floor of the connector corridor between the hospital tower lobby and the Inova Women's Center. The hours of operation are Monday through Friday from 8 a.m. to 8 p.m. and Saturday from 9 a.m. to 5 p.m. If you have any questions, you can phone the library at:

Main desk: 703-776-3234
Reference: 703-776-3357
Fax: 703-776-3353

:: Back to top ::

For Family & Friends

Helpful Tips and Worksheets


Helpful Web Sites

  • National Ovarian Cancer Coalition: Awareness and education about ovarian cancer; committed to improving the survival rate and quality of life for women with ovarian cancer.

Additional Resources

Health Sciences Library at Inova Fairfax Hospital
The Health Sciences Library at Inova Fairfax Hospital provides access to clinical and managerial literature, computerized databases, patient education, and other resources needed to support patient care, quality improvement, continuing education and research.

The library also supplies books and videotapes, including the Life with Cancer Family Resource collection that is available for in-library or home use. A computer workstation provides access to a selection of health-related databases, CD-ROMs, and other computer education programs.

The library is located in Inova Fairfax Hospital on the first floor of the connector corridor between the hospital tower lobby and the Inova Women's Center. The hours of operation are Monday through Friday from 8 a.m. to 8 p.m. and Saturday from 9 a.m. to 5 p.m. If you have any questions, you can phone the library at:

Main desk: 703-776-3234
Reference: 703-776-3357
Fax: 703-776-3353

:: Back to top ::

 




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