Have you just been diagnosed with colorectal cancer (CRC)? It might feel overwhelming, but remember to take things just one step at a time.
Here are some essential questions to consider — and important things to talk to your healthcare team about.
Knowing which tests you’ve had so far — and what the results show — can help you get a handle on what you’re dealing with. Sign up for your cancer center’s patient portal and get access to your medical records. Ask your oncologist (a doctor that specializes in cancer) for copies of your tests.
Get to know your healthcare team. You’ll likely be spending a lot of time with them, and they are there to support you. Other than your oncologist, your team can include a surgeon and a radiation oncologist. At specialized cancer centers your team may include a dietitian, genetic counselor, integrative doctor, counselor/therapist, social worker, palliative care expert and more! Some team members work on creating treatment plans, others help you manage side effects. Knowing who to go to when you have questions can be very helpful.
Take a look at our Healthcare Team Roundup section here.
Depending on how extensive your cancer is, treatment will look different for everyone. Treatment can include surgery, radiation, chemotherapy, or other medications. Speak to your healthcare team to find out what your treatment timeline looks like — and how quickly treatments might be coming up.
Not all oncologists specialize in colorectal cancer — and it’s possible that your oncologist is an expert in another cancer. Ask your oncologist how many of their patients are CRC patients, and what they do to keep up with new CRC research. Feel free to research online to find an oncologist that works for you. Ask for recommendations from people you know. Getting a new oncologist is as easy as calling and making an appointment. If they don’t have space, keep looking.
For some people, knowing the outlook of their disease helps put things in perspective. For others, it can be too stressful. Communicate with your doctor about what you’d like to know about your cancer — and be clear about what you’d rather not discuss.
Check out this guide from the National Cancer Institute.
If you do want to know your prognosis, remember that they are often based on statistics. These statistics can tell you how someone with disease characteristics similar to yours may behave, but it’s good to remember that no two cases are identical. So while statistics give you some broad information about outcomes, their applicability may vary case-by-case. If you want to hear stories of hope — and talk with people going through the same things — come join us in COLONTOWN.
Getting a second opinion can give you a new perspective on your disease, or catch things that your healthcare team didn’t spot. Although there are standardized guidelines for cancer care, your oncologist’s approach to treatment can vary depending on where they studied and the type of institution they work at (community clinic vs academic institution vs specialized cancer center). It’s a good idea to get a second opinion from an NCI-designated cancer center (cancer centers that are recognized as leaders in laboratory and clinical research) to make sure the treatment course that has been suggested is best suited to you.
Click here to find one near you.
Even after you leave the cancer center, your care team is there for you. Ask your doctor how to reach them after hours.
Speak to your doctor about what kind of treatment side effects are common, and what might be concerning. Ask them when you should call them. If you’re feeling short of breath, dizzy and/or disoriented, please seek out emergency care immediately. If you’re unsure, visit the emergency room.
Your daily responsibilities might seem overwhelming right now. Reach out to your support group — your family, friends and loved ones. Do you need help cooking dinner? Do you need help with childcare while getting treatment? Do you have a ride to your appointments? Those around you likely want to help out, don’t be afraid to lean on them.
You’re likely feeling a lot of different emotions, and that’s okay. Many people tell cancer patients to “stay positive,” but cancer is something that is hard to stay positive about! Don’t keep everything inside. Reach out to your family and friends. Inquire about emotional support groups your hospital or cancer center has available. Reach out to nonprofit organizations that offer help. Speak to a medical professional like a psychologist or psychiatrist with experience helping cancer patients. Connect with COLONTOWN, where there are over 120 Facebook groups filled with people just like you.
You might be unsure how to tell people about this new change in your life. Some people want to keep the news quite private, only sharing with their immediate family. Others want to share with everyone on social media, so they don’t have to keep answering the same questions over and over. Other people take a middle of the road path, sending an email out to only the people who need to know.
Do what feels best for you. Don’t feel obligated to reply to everyone that reaches out. Know that they are doing their best to support you, even if it is frustrating to hear “I’m sorry” a hundred times. Offering concrete ways to help (gift cards for food delivery, specific chores you need help with, or even just a simple afternoon cup of tea to catch up) will take some of the pressure off their shoulders — and help you avoid having a dozen lasagnas in the fridge!
Knowing how or when to tell your children can be a difficult decision. You know them best. Think about age appropriate metaphors, and do your best to keep the conversation in the present. Explain how these changes will affect them. If you have treatment on Tuesdays, and can’t take your kids to dance class anymore, let them know. Even if it’s difficult, try to answer their questions honestly. The social worker at your cancer center may be able to provide some guidance.
The great majority (around 95%) of colorectal cancers are linked to spontaneous mutations. A small percentage (around 5%) of CRC stems from inherited germline (heritable) mutations. Genetic testing can determine if you have a heritable mutation. If your doctor suspects your cancer may be heritable, they will order testing for you. If you were diagnosed before age 45, and your doctor hasn’t ordered germline testing, it’s a good idea to ask for it.
If you want to learn more, check out our section on cancer and your genes.
Make sure that you understand what your insurance covers, and what your deductible is. Call your insurance company to discuss exactly what they can pay for. Reach out to your cancer center. Many centers have a social worker who can help you navigate the financial cost. If your doctor orders a test that is not covered by your insurance, many testing companies have financial assistance programs as well. Nonprofit organizations — such as COLONTOWN’s Second Opinion Project — can help you with unexpected costs related to your treatment.
You are not required to disclose your cancer diagnosis to your workplace, but if you feel comfortable, you can speak to your HR department. It’s possible that your workplace offers short-term or long-term disability options. It might even be possible to work part-time while you’re in treatment.
Under the United States Equal Employment Opportunities Commission (EEOC), cancer is not always considered a disability. However, depending on the ways your cancer has affected your everyday life, the Americans with Disabilities Act (ADA) can help protect you. Examples of reasonable accommodations include changing work schedules and making the workplace easier to access if you have mobility issues.
Your disease is your own, and you should manage it as you feel is best for you. Sign up for your cancer center’s medical online portal, and get access to your records. Get copies of every scan and blood test you get; this will make it easier to keep track of your disease and get a second opinion. If you’re confused about something, speak up and ask questions. If you disagree with something, let your healthcare team know. You are in charge.
It may feel daunting at first, and you might not know where to begin. Join support communities like COLONTOWN to see how others are advocating for themselves. Over time, you may feel more comfortable with taking an active role in your treatment.
Last updated: May 18, 2022