Where to Find Support if You Have Kidney Cancer
Rachel Zohn | April 30, 2018
A diagnoses of kidney cancer can turn your world upside down. According to the American Cancer Society, every year about 63,340 new cases of kidney cancer will occur, including 42,680 in men and 22,660 in women. If you’re a kidney cancer patient or a loved one with this diagnosis, here are some places that can offer support.
Helpful websites to know
If you’re trying to make sense of your diagnosis, there are a number of websites that can help. The National Cancer Institute (NCI) website covers all types of cancer, including kidney cancer. The American Cancer Society has an extensive section on kidney cancer, including free downloadable PDFs. Cancer.Net, sponsored by the American Society of Clinical Oncology (ASCO), has an online guide to kidney cancer, including medical illustrations and treatment options.
Support is a phone call or live chat away
Sometimes you just need to talk with someone who can answer your questions. NCI has trained cancer information specialists that are available via phone or live chat. You can call the NCI Contact Center at 1-800-4-CANCER (1-800-422-6237) or click the LiveHelp button for online assistance. Chat support is available Monday-Friday from 9 a.m. to 9 p.m.
The Kidney Cancer Association offers useful information
The Kidney Cancer Association (KCA) is an international charity, with members in 100 countries, that is dedicated to eliminating kidney cancer. The association works with the National Cancer Institute, ASCO, and the American Urological Association. KCA provides information on the disease, treatment options, and resources. The site has a free download of “We Have Kidney Cancer – A Practical Guide For Patients & Families.”
Support groups are a click away
Patient support groups can be wonderful places to share information, experiences, and feelings. There are many such support groups throughout the U.S., with some hosted at local hospitals or through non-profits groups. The American Cancer Society has an online tool to help patients search for resources in their area.
Counseling services offer real-time help
Patients and caregivers may face depression and anxiety. Sometimes they may need to seek professional counseling. A few organizations that can help include:
Social media provides constant connection
Social media can be a great way to connect with others within your cancer community. More than a dozen Facebook groups and pages support kidney cancer patients. Some, like Kidney Cancer survivors, are a general support group, while some are for patients based in a specific city or region. Still others are in support of a specific type of kidney cancer, such as Wilms tumor.
Online message boards and forum are always available
One great benefit to online forums and message boards is they never close for business. You can always reach out. Here are several options:
KCA has an active online support group and discussion community.
CancerCompass is an online community that is sponsored by Cancer Treatment Centers of America. It offers resources for both patients and caregivers via online message boards, blogs, and forums.
Cancer Support Community provides an online space called the Living Room where patients can connect online.
Use a patient website to connect with and update your family and friends
Many patients draw strength and empowerment by creating their own website or blog as a way to share their experiences and connect with others. Some nonprofits offer this service for free.
Help for when you need financial support
Financial assistance programs can help those who are struggling to pay for cancer-related costs, including homecare, transportation, co-pays, child care, medications, and medical supplies. Programs have various requirements, such as falling below federal poverty guidelines, having insurance, or being covered through a government entitlement program such as Medicare or Medicaid.
Finding a financial assistance program
Here are a few financial assistance programs that may be able to help:
Don’t forget family and caregivers
Being charged with caring for a loved one can be emotionally draining and challenging. Caregivers often overlook their own needs, and some may suffer from anxiety and depression. It’s critical that caregivers get support for themselves and for those they’re caring for.
Finding support for family, caregivers
Here are a few online resources and tools that can help caregivers get the support they need.
Help For Cancer Caregivers is an online tool to pinpoint resources and offer help through a caregiver guide.
My Cancer Circle is a private support community for caregivers of people with cancer.
The National Center on Caregiving has a state-by-state navigator to help caregivers find local programs and support.
Feel empowered and know you’re not alone
No matter what you’re going through on your journey with kidney cancer, there are resources out there to help you get connected, feel supported, and help you know that you’re not alone.