Patient Information & Assistance

HomePatient Information & Assistance

For up to date information visit the June E. Nylen Cancer Center Website News/Blog page.  Good sources of information can be found on the website of the American Cancer Society; The American Institute of Cancer Research , the Iowa Cancer Consortium, and  the Association of Cancer Online Resources.

Click on the topics below to find out more information about your particular cancer diagnosis or situation.

American Brain Tumor Association Offers free publications, educational programs, social service consultations by telephone, a mentorship program, support group lists, a resource list of physicians, a pen pal program and funds research. It has an excellent online publication called A Primer of Brain Tumors. It may take a while to download, but the information and the graphics are excellent. This site also has a brain tumor glossary, news, events and research plus a kids’ section. The site has an extensive list of web sites and a list of support resources, including chat rooms and bulletin boards. However, please note their disclaimer and use these resources with caution. The ABTA has a booklet about brain tumors in Spanish. www.abta.org

Brain Tumor Society Provides individualized patient/family information, publishes educational materials, sponsors professional and patient conferences. www.tbts.org

Lung Cancer Links:







Iowa Toll free 1-866-U-CAN-TRY


Lung Cancer Advocacy & Support: 800-298-2436

Dedicated solely to helping people at risk for and living with lung cancer. Programs include psychosocial support services, education, early detection, treatments, as well as advocacy issues. www.alcase.org

Blood & Marrow Transplant Information Network 888-597-7674 Publishes a newsletter, a 228-page book describing BMTs and a 208-page book about autologous stem cell transplants. Also links transplant patients with survivors, maintains a directory of transplant centers and helps with insurance problems. www.bmtinfonet.org

National Bone Marrow Transplant Link 800-LINK-BMT 248-358-1886 Provides peer support to BMT patients and families and serves as a resource center for BMY patients and health professionals. Offers educational booklets and a video. www.nbmtlink.org

National Marrow Donor Program 800-MARROW-2 Facilitates unrelated blood stem cell transplants and maintains a registry of more than five million volunteer donors, offers matching services and patient services and conducts research. www.marrow.org

Avon Breast Cancer Crusade www.avoncompany.com/women/avoncrusade

Breast Cancer Information A non-profit organization providing reliable, complete and up-to-date information about breast cancer. www.breastcancerinfo.com http://www.breastcancer.org Breast Health Information www.imaginis.comBreast Cancer www.sharecancersuppport.org Cancer Care 800-813-HOPE Provides free professional counseling, support groups, restricted financial assistance, education and referrals to cancer patients and their loved ones. Services provided face-to-face, by telephone, and online. www.cancercare.org

Sister’s Network 713-781-0255 Sister’s Network is a national African-American breast cancer survivor’s organization. Their site has fact sheets, brochures, news, events, chapter information and cancer links. They also give statistics about African-Americans and breast cancer. This organization hopes to provide emotional support, research, advocacy and community programs for African-American breast cancer survivors. www.sistersnetworkinc.org

Susan G Komen Breast Cancer Foundation 1-800-462-9273 Dedicated to eradicating breast cancer as a life-threatening disease by advancing research, education, screening and treatment. Annually awards research grants and fellowships. www.komen.org

Conversations! Publishes Conservations – the international newsletter for those fighting ovarian cancer. The monthly newsletter provides hope, humor, support, and information about treatment options and coping tips. Survivor-to-fighter matching service available. 806-355-2565. www.ovarian-news.org

Gilda’s Club – Phone 888-GILDA-4-U, 917-305-1200 Gilda’s club is a wonderful support organization for people living with cancer. The site has a resource directory with links to many helpful web resources and an online locator to find local chapters in the United States. Many local chapters have events and support groups. Part of this site is available in Spanish. www.gildasclub.org

Ovarian Cancer Coalition (NOCC) 888-OVARIAN 561-393-0005 Raises awareness to promote early detection and education about the disease. Sponsors education seminars for healthcare providers and educational forums for the public. www.ovarian.org

Ovarian Cancer Research Fund 800-873-9569 Dedicated to advancing research by underwriting investigations to find techniques for early detection and to aid in the development of new therapies. Raises awareness through educational outreach programs, awareness projects, including videos and resource materials. www.ocrf.org

Cervical Cancer Coalition www.nccc-online.org.

Pancreatic Cancer Action Network 877-272-6226 Works to focus national attention on the need to find the cure for pancreatic cancer by providing advocacy, awareness, education to patients and professionals. www.pancan.org

Colon Cancer Alliance (CCA) An organization made up of colon and rectal cancer survivors and caregivers. Patient services include a buddy program, educational materials, clinical trial information, and current news about colorectal cancer treatment and research. www.CCAlliance.org

Free Colon Cancer Screening program for Iowans who are uninsured and underinsured and meet the financial guidelines.  http://www.coloncanceriowa.org/scope-it.html

Prostate Cancer Support US Too! International, Inc. Provides publications, awareness, outreach, networking, and advocates to improve prostate cancer screening and treatment. www.ustoo.org

Fertile Hope 888-994-HOPE Provides reproductive information, support and hope to cancer survivors whose medical treatments present the risk of infertility. www.fertilehope.org

Sarcoma Alliance 415-381-7236 Provides education and support to people with sarcomas and their family, friends and caregivers. www.sarcomaalliance.org

Leukemia and Lymphoma Society of America 800-955-4572 (information resource center: 9 am – 6 pm ET) 914-949-5213 (general information) Dedicated to seeking the cause and eventual cure of leukemia, lymphoma and myeloma. Programs include research funding, patient aid, peer support, family support groups, and education. www.leukemia-lymphoma.org

Lymphoma Research Foundation 800-500-9976 dedicated to eradicating lymphoma and serving those touched by this disease. www.lymphoma.org

Melanoma www.melanoma.com

Melanoma Education Foundation www.skincheck.com

Melanoma Patients Information Page www.mpip.org

Skin Cancer Foundation 800-SKIN-490 This site has information about how to prevent skin cancer, early warning signs of skin cancer and types of skin cancer. The Skin Cancer Foundation supports public education, skin cancer research, and community action geared toward preventing skin cancer. www.skincancer.org

ThyCa: Thyroid Cancer Survivors’ Association, Inc. 877-588-7904 Provides free support services, education, downloadable low-iodine cookbook, and newsletter. Holds annual conference. Outreach and materials available to everyone whose life has been touched by thyroid cancer. www.thyca.org.

Hormone Health Network focuses on helping educate people on the topic of thyroid health. They’ve provided us with the below infographic to help you learn more about thyroid cancer.

Brave Kids This site offers help for kids with chronic, life threatening illnesses or disabilities. It is geared toward parents, children and siblings. They have a search engine for resources, web sites, books, videos, camps, etc. They have an online support community for adults, but it is not constantly moderated, so please use caution. It has a sub site called Club Brave Kids, for kids with special needs and their siblings. Kids can also talk and share their feelings online. www.bravekids.org

Cancersourcekids.com Kids, teens and parents can learn about childhood cancer on this site. Parents can view a slide show about cancer. (The slide show is available in both English and Spanish). This site also has coping information, lists of camps and wish foundations, back to school information, and cancer news. In the kid’s section, check out “Oliver’s Story” (animated story about a dog whose friend has leukemia). CancerNet www.cancernet.nci.nih.gov

Candlelighters Childhood Cancer Foundation 800-366-CCCF Candlelighters is a childhood cancer foundation that offers support and resources to families of children and teens with cancer. They have sections for kids, teens, and siblings. They have sections about treatment, advocacy, supports and happenings. They have a list of helpful cancer books which can be purchased online. They also have links to many helpful websites. www.candlelighters.org

Foundation for the Children’s Oncology Group This site offers facts about childhood cancer, current news, and childhood cancer research. Links to other reputable sites provide more information about specific types of cancer, information about advocacy, resources, and a search engine are also included. Stories about kids with cancer add a nice touch to this site.

Grief Support Group for Teens Call Robyn at Hospice and Palliative Care of Siouxland, 712-233-4144 Provides grief support groups for children and teens ages 5 to 18 who are grieving the recent death of a loved one or experiencing grief from a past loss.

Kids Cancer Network The Web site contains a bi-monthly Funletter magazine (also in Spanish), resource center. Affection Connection appreciation certificates for medical caregivers, pen-friend program, prayer network and “your story” sharing area. www.kidscancernetwork.org

Kids Konnected 800-899-2866, 949-582-5443 Provides friendship, education, support to kids who have a parent with cancer. www.kidskonnected.org.

Neuroblastoma Childrens Cancer Society This site is a good resource for parents of children with neuroblastoma. The site focuses on raising money for research and increasing awareness about the disease. For actual information about the disease, the site has many links to reputable cancer associations. www.neuroblastomacancer.org

Pediatric Brain Tumor Foundation 800-253-6530 Funds medical research grants to help find the cause and cure of childhood brain tumors. Offers support programs for families with a child with a brain tumor. Services include free literature, a newsletter and internet conference series. www.pbtfus.org

Starbright This site has resources for kids and teen with chronic, medical and life threatening illnesses. Many of the resources are free to kids with illness. Organizations can purchase resources online. Helpful web links are also available. The site has a Family Room and online community message boards. However, always use caution when using message boards. Verify information with your healthcare professional and do not give out personal information on-line. www.starbrightworld.org

Teens Living with Cancer Great site for teens living with cancer. They have sections on cancer facts, dealing with cancer, family and friends and chat rooms and discussion boards. Always use caution and read privacy policies when participating in chat rooms and discussion boards. The site does have on-line support groups which are facilitated by professionals; however sometimes there is a waiting list to join a group. The site also has helpful web sites. www.teenslivingwithcancer.org

TEENS Coping with Chemo New online tool for Teens. “Coping with Chemo” is a series of “webisodes,” animated vignettes on the Internet, that use high-end graphics and animation to provide information and support to teens who will undergo chemotherapy treatment for cancer. This site talks about first diagnosis, telling your friends, side effects, when your hair comes out, making tough decisions, and celebrating your last treatment. EXCELLENT SITE!!!! www.slsb.org/chemo

Lance Armstrong Foundation 512-236-8820 Dedicated to enhancing the quality of life for people living with, through, and beyond cancer. Focuses on survivorship resources and support, survivorship programs, national advocacy initiatives, and scientific and clinical research grants. www.laf.org.

Living Beyond Breast Cancer 610-645-4567 www.lbbc.org

National Coalition for Cancer Survivorship (NCCS) 877-622-7937 Leads and strengthens the survivorship movement, empowers cancer survivors, and advocates for policy issues that affect cancer survivors’ quality of life. www.canceradvocacy.org.

Cancer Hope Network 877-HOPENET Offers free one-on-one support to cancer patients undergoing cancer treatment and their families using trained volunteers who have survived cancer. www.cancerhopenetwork.org

Cancersource.com This site has a wealth of information and support about cancer. It is categorized by audience and clearly specifies different levels of information. In addition to cancer information, it has on-line mailing lists, message boards and chats, which are moderated by health care professionals. This site has an extensive list of resources (as always, carefully evaluate links you use).

Cancer Supportive Care Program This site has a wealth of information about cancer. It has many on-line learning modules about a variety of cancer issues, such as pain, fatigue, nutrition, exercise and much more. The modules discuss the issues and offer practical management suggestions. Some of the articles are available in Spanish. www.cancersupportivecare.com

Chemo Angels Support for cancer patients. www.chemoangels.com Children’s Brain Tumor Foundation (CBTF) 866-228-4673 Offers a free resource guide (in English and Spanish), the Parent-To-Parent Network, telephone support groups, newsletter, and an annual teleconference and funds research. www.cbtf.org

Coping with Cancer Magazine 615-790-2400 America’s consumer magazine for people whose lives have been touched by cancer. Provides knowledge, hope, and inspiration from cancer survivors and healthcare professionals. Now in its 18th year of service, “Coping” provides official annual coverage of National Cancer Survivors Day. www.copingmag.com

Make a Child Smile This organization offers emotional and financial support to families whose children suffer from chronic or life-threatening illnesses. Each month, new children are featured. The organization raises funds to provide financial assistance to qualifying families for help with medical expenses or other costs associated with the child’s illness. Some of the supportive poems on the site have a religious bias. www.makeachildsmile.org

Snow Removal Program for patients undergoing oxaliplatin chemotherapy treatment. http://www.coloncanceriowa.org/snow-angels.html

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