Colorectal cancer refers to cancer found anywhere in either your colon or rectum (separately called colon cancer and rectal cancer). Regular colonoscopies can usually find and remove any precancerous changes (called polyps) before they turn into cancer.
But that’s not of much comfort if you’ve been diagnosed with colorectal cancer. You’ll want to know as much as you can so and your doctor can make the best decisions for you. Your doctor is one of the best sources of information, but doing your own research can help make sure you’re both speaking the same language.
We’ve listed resources that we believe offer reliable information, support resources and other help, organized by category (although some resources do overlap categories).
Once you have a better understanding of your diagnosis, you may want to do more research on your own. To help you find reliable sources, we’ve put together a short page of research tips you might find helpful.
Colorectal Cancer Overviews
Before you can make any decisions, you need to really understand your diagnosis. Even if your doctor tried to explain it to you, you may have been too overwhelmed to listen and remember much. At home, in familiar surroundings, you can read and re-read until you do understand. These overview guides will help you to do that.
Colorectal Cancer Overview Guide: From the American Cancer Society, this guide offers a brief overview of what this cancer is, how it’s diagnosed and treated and what may happen after treatment. There’s also a detailed guide, if you want more information.
Colorectal Cancer: This guide from NIH Senior Health offers information on risk factors, symptoms, treatment and more in plain language.
Colon Cancer: This guide from the Mayo Clinic explains what colon and rectal cancers are, what things increase your risk, possible treatments and more. It also suggests some questions you may want to ask your doctor.
Although not an overview of the cancer, the Colon Cancer Alliance has a FAQ page with answers to some of the most common questions people have after getting a colorectal cancer diagnosis.
Organizations Devoted to Colorectal Cancer
These are a few of the organizations that exist to raise awareness of colorectal cancer, support research and/or help patients and loved ones access resources and learn more about their options.
Colon Cancer Alliance: This organization started as an online support group in 1999. The members of this group wanted to raise awareness of colon cancer and support those with it. Today it is a non-profit with a vision of wiping out colon cancer through education and early detection. It offers a lot of information for patients and their friends and family. There’s an online community and a chat room plus a buddy program that offers one-on-one support.
Fight Colorectal Cancer: Previously called C3 – Colorectal Cancer Coalition – this organization was started by one of the original members of the Colon Cancer Alliance. It is a patient advocacy group, fighting for a cure (hence the name change) and giving a voice to patients with regards to research and policy. Its AnswerLine can help you find the answers you need about your disease, finding financial assistance and more.
The Colon Club: This organization is “dedicated to raising awareness of colorectal cancer in out-of-the-box ways.” One of those out-of-the-box projects was the Colossal Colon®, or Coco, a 40-foot long, 4-foot tall model colon where you can see what the stages of colorectal cancer, and other diseases of the colon, look like.
Get Your Rear in Gear: Get Your Rear in Gear events are run/walks organized by the Colon Cancer Coalition to bring awareness to local communities, promoting prevention and early detection.
Research into Colorectal Cancer
Researchers are finding new information about colon and rectal cancer every year. Some of this research can help improve diagnosis, personalize treatment and improve outcomes. The National Cancer Institute was funding more than 1000 studies specific to or related to colorectal cancer in its fiscal year 2012.
NCI offers summaries of trial results for some of their recent colon and rectal cancer trials. If you’re interested in being a part of similar trials, the following sites can help you find one. If you find anything you think you’d like to be part of, your doctor can help you figure out if you qualify and how to enroll.
ClinicalTrials.gov: This simple search on “colorectal cancer” lists all trials, including those that are finished or no longer accepting patients. The modify results page lets you narrow the list to open trials and choose other criteria, like certain age groups or trials being conducted near you.
National Cancer Institute Clinical Trials Search: This search page asks for a lot of information like the stage of your cancer, type of treatment you want and more. This extra detail can help you find trials most suitable for you quicker, but only if you can actually fill in all the information. The NCI does have a help line and live chat (LiveHelp) where you can get help from a cancer information specialist. The phone number and chat link are at the top left of the page.
Fight Colorectal Cancer Clinical Trial Matching Service: Fight Colorectal Cancer has partnered with EmergingMed to help you find a trial you qualify for. You can either call to talk with a navigator or do a search on the site. You have the option of seeing all the trials in their database or creating a secure account where you can complete your profile and find trials that match your diagnosis.
Forums and Support Groups about Colorectal Cancer
Connect with others who understand how you’re feeling and what you’re going through. Family and friends want to help, but they can’t always fully understand.
United Ostomy Association of America support groups: If you’ve had to have a colostomy because of your cancer, you may want to connect with others who’ve had the same procedure (not always because of cancer). The UOAA has a list of affiliated support groups, both virtual and local. Some states have fewer local groups than others, but the virtual groups are open to anyone anywhere.
Daily Strength: Daily Strength is a network of communities where you can connect with others going through the same thing as you. The colon cancer group seems moderately active, with postings coming in waves (several quiet days & then a group of posts), and the members appear to care about each other. There’s also a Caregivers Support Group.
Counseling from CancerCare: Patients and their loved ones (including caregivers) can talk one-on-one with an oncology social worker.
Colorectal Cancer Patient Support Group: From CancerCare, this is an online support group that runs for 15 weeks and is led by an oncology social worker.
Stupid Cancer: This non-profit organization was founded to offer support to young adults with cancer. Through things like social media, boot camps and meetups, it offers people who may feel they don’t quite “fit” in groups of older cancer patients ways to connect and keep living.
Other Resources for Colorectal Cancer
Depending on your situation, you may also find some of these resources helpful.
Financial Assistance from CancerCare: You may qualify for help paying for things like home care and child care. If Cancer Care can’t help you, they’ll try to refer you to an organization that can.
Colorectal Cancer Control Program: This program, from the Centers for Disease Control and Prevention, helps pay for screening for older, low-income people in 25 states and 4 tribes. You can see if your state has a local program (and if you qualify) here.
What’s Your Risk of Getting Colorectal Cancer?: Are you worried about how likely you are to get this cancer? The NCI’s risk assessment tool can help you find out. This tool is actually for doctors, but you can take the test yourself and discuss the risks with your doctor.
Cancer Financial Assistance Coalition: If you’re having trouble paying your bills or affording your drugs, you may qualify for help from a variety of organizations. This page lists national organizations that help people with colorectal cancer or any cancer diagnosis. You can also enter your zip code to find any additional, regional organizations that may be able to help.
Colorectal CareLine: If you’re feeling overwhelmed with all your choices or you can’t find what you need, this service from the Patient Advocate Foundation lets you talk with a clinical case manager who can help you find just the information you need, assistance programs, clinical trials and more.
Helping Your Kids Understand Your Colorectal Cancer
We didn’t find any resources for kids specifically for colorectal cancer, but our Cancer Resources for Kids and Teens page lists many helpful resources, including:
- Articles to help you talk with your kids about your diagnosis; several include age-specific advice
- Books with age-appropriate information (several actually written by kids)
- Websites specifically for kids and teens
- Support groups for kids, teens and young adults
A cancer diagnosis is hard for everyone, but kids can be hit especially hard. Each family and each child is different, so you may want to review several of the listed resources to figure out which is best for you and your child(ren).
Caregiver Resources
If you’re caring for someone with Colorectal Cancer, you need support and understanding, too.
The support section mentions a few communities that include caregivers in their support efforts. Or try this one:
Colon Cancer Coalition Caregiver Network: This network has created a supportive Facebook group where caregivers can connect with others caring for someone with colorectal cancer. And it offers mini-grants to help ease the financial burdens.
For more general support for caregivers of cancer patients, take a look at our Cancer Caregiver Resources page.
We hope you’ve found some resources to help you as you deal with your colorectal cancer diagnosis. If you’ve done additional research and found a particularly good resource you’d like to share, please leave us a comment. We may add it to our list to help others!