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Patient to Patient Advice: The Voice of Experience

You’ve just been diagnosed with colorectal cancer, and you have a million things going through your mind. But mostly you are wondering what now? Here are some thoughts from actual patients.

First Things First:

  • One of the most important steps in this process is finding an oncologist you are comfortable with and trust. Usually the doctor that performs the colonoscopy can help you with a referral to an oncologist. If available, NCI (National Cancer Institute) designated cancer centers are a good option for some of the most cutting-edge treatments and oncologists that only treat colorectal cancer patients. Most oncologists treat all types of cancer, so if access to an NCI cancer center is not an option ask if there is an oncologist that specializes in gastrointestinal cancers available locally. 
  • Make a medical binder to keep important paperwork. Start with your initial scans, colonoscopy, and/or pathology reports. Also ask for copies of all your CT/PET scans and MRIs on disc. This way if you move or get a second opinion you can give everything to other medical facilities without delay. It also allows you to have easy access to test results.   
  • If possible, do not go to your first oncology appointment alone. You are going to get a lot of information on your first visit and most likely will still be reeling from the initial diagnosis. Have a family member or friend come with you and take notes. If that is not possible ask the oncologist if you can record your appointment.
  • Write down questions you have before your appointment and take them with you. The first appointment is overwhelming to say the least. You may not remember everything you want to ask, so having that reference is extremely helpful.
  • Be honest with your new oncologist. You are a team. Do not hesitate to share your wants, needs, concerns, and feelings.
  • Ask for genetic testing and a test for DPD deficiency (a syndrome that keeps the body from processing certain chemotherapy drugs). This testing will help your oncologist determine the best course of action for treatment.
  • Talk to your doctors about preserving your fertility if you want children in the future. This goes for men and women.
  • Read the information you receive from your doctors, so you have an idea of what to expect with your treatment plan. You will never be prepared for everything this diagnosis throws at you, but having a basic idea helps.
  • We all want to jump on the internet to see stats and survival rates after diagnosis. Don’t do it if you can stand it. Everyone is an individual. Stats are often dated, and everyone is different.

Treatment Tips:

Surgery: 

  • Bring some of the comforts of home for your stay. Having your own pajama bottoms, toiletries, pictures, etc. can be comforting.
  • Technology, crosswords, word searches, magazines, and books can help pass the time. Don’t forget those chargers.
  • Designate a person to update your family and friends of your status, so you don’t have to.
  • Get up and walking as soon as you are physically able. Walking helps wake up your intestines after surgery. Listen to your body and don’t overdo it. 
  • Once again be honest with your nurses and doctors. This is the best way to help identify any complications and get you home more quickly.
  • Follow your discharge instructions and do not hesitate to call your surgeon if you are not doing well before your follow-up appointment.

Chemotherapy:

  • Before chemotherapy begins you will most likely have a port placed to make infusions easier. This is a quick outpatient procedure.
  • Take a chemo buddy. They can be a second set of ears and keep you company during infusion. You can bring play cards or watch a movie on a mobile device, and you will have a ride to and from treatment.
  • FOLFOX is the usual first line treatment for colon cancer with various side effects. Share all your side effects with your oncologist no matter how minor you think they are. 
  • Cold sensitivity: Drink room temperature or warm drinks. Do not drink cold drinks. It is very painful. If the weather is cold bundle up, wear gloves, and use a scarf to cover your mouth. Keep a pair of gloves close to the refrigerator and freezer and use them to pick up cold things.
  • Hand and foot syndrome: The skin on your hands and feet may become red, painful, extremely dry, and/or begin to crack. Lotions with a high urea content can be helpful and your doctor can also recommend specific brands to try. At night, try putting soft socks over your hands and feet after using a generous amount of lotion to cover them.
  • Neuropathy: You may experience numbness, tingling, a burning sensation and/or pain in your extremities. Let your doctor know about this immediately. There is medication to help and your chemotherapy dose may need to be adjusted.
  • Nausea, vomiting, and/or diarrhea: There are many medications available to help you, which your doctor should prescribe or advise to purchase over the counter.
  • Fatigue: You’re going to be tired. Listen to your body and rest when you need to rest. When you can do things, do them but don’t feel guilty when you can’t. If your fatigue is super intense, let your doctor know.
  • Having your favorite blanket, hard candies to counteract any taste, a drink you like, or a token that brings you comfort can be nice to have with you.

Radiation:

  • Before starting radiation ask about sexual and reproductive side effects. Ladies specifically ask about dilators and gentleman ask about erectile dysfunction. These may be uncomfortable conversations but are so important to your future intimacy with a significant other and your ability to have children.
  • If you have never had a tattoo, surprise! You will have your first during mapping for radiation treatment. Don’t worry it is just two tiny dots. This is done to help make sure you are lined up correctly for radiation, so the doctor can target a specific area.
  • Ask the doctor for cream for burns at your first appointment. That way it is on hand if you need it. Your doctor will also recommend over the counter lotions to use daily. Do NOT wear lotion to radiation treatment.
  • You will do radiation five days a week with either an oral or infusion type of chemotherapy. This generally occurs for 5-6 weeks.
  • You are going to be tired. And you may have some burns from radiation. Be sure to keep your doctor informed of how you are feeling.

Navigating Life with Colorectal Cancer:

  • Do not ignore your mental health and overall well-being. Ask doctors about integrative and palliative care. Palliative care is not just hospice care. It is quality of life care. If you are in pain physically or emotionally, there are people to help.
  • Find people who get it. From in-person support to social media, there are a so many folks who understand exactly what you are going through. The Colon Club offers Colon Talk where you can anonymously ask for advice and support from fellow patients and caregivers.  
  • Speaking of help, take it. People who care want to make your life easier. Sometimes they don’t know what to do. If they aren’t offering specifics, give them some or designate someone to do it for you. You have no idea how comforting it can be to know your family is fed or a playdate for your kids can be during treatment week.  
  • You can still have an active and fulfilling life with cancer. Make plans. Have adventures. It is okay to cancel if something comes up, but don’t avoid doing things you enjoy because you are afraid. You can thrive while surviving!

This is not medical advice. The opinions expressed here are from patients, not The Colon Club.