The Colorectal Cancer Alliance’s nation of allies—patients, survivors, and caregivers—converged on Boston earlier this month for AllyCon, the Alliance’s annual national conference. In partnership with the Dana-Farber Cancer Institute, the Alliance welcomed experts from across the cancer care continuum to provide allies with the latest updates in treatments, research, and tips to make their cancer journey a little easier. Below are just some of the top takeaways from AllyCon.
1. Trust your body
No one knows your body better than you. Regardless of your medical history, stay vigilant for colorectal cancer symptoms. Keep vigilant after cancer treatment. Symptoms can help medical professionals determine if screening is needed, especially when a recommendation for screening would fall outside of guidelines. If you have a family history of colorectal cancer and are experiencing symptoms, don’t stop fighting for a colonoscopy, regardless of your age. And when it comes to screening—rest assured—technology today provides extremely accurate results, and colorectal cancer screening methods are only getting better.
2. Molecular profiling is critical
Oncologists use molecular profiling, a process used in identifying biomarkers, to understand more about a tumor. By performing a biopsy, an oncologist can analyze a tiny piece of the tumor and learn about its genetics. This genetic information helps oncologists classify a tumor for diagnostic, prognostic, and predictive purposes. And this matters a lot! A doctor can match specific tumor types to clinical trials and specific drugs that could potentially target the tumor with more success. If you want to learn more about molecular profiling, please visit our page about biomarkers.
3. Ask for a survivorship plan
Nina N. Grenon, DNP, told AllyCon attendees that asking for a survivorship care plan at the end of treatment is essential. She added that post-treatment needs of cancer survivors are often not met. A survivorship care plan should be made by a patient’s nurse practitioner or social worker and shared with the patient’s primary caregiver. A plan, with follow-through, is critical to a patient’s well-being in the years after treatment. The American Cancer Society has more about survivorship care plans here.
4. Set expectations with friends and family
The time immediately after a colorectal cancer diagnosis is often overwhelming. While a patient and his or her caregivers are dealing with immediate needs—everything from treatment to finances—well-intentioned friends and family can become unexpected sources of stress. Loved ones may rush to offer things like support, food, and visits, but you’re left to organize and account for it all—on top of everything else. It’s imperative that the patient and his or her caregivers set expectations with friends and family, keeping the patient’s health at the center of the conversation. A popular tool for updating friends and family during treatment, as well as coordinating help, is CaringBridge.
5. Meditate daily
Meditation is an essential tool for resiliency, adaptation, and self-efficacy. Following through with regular meditation may help you manage stress and decrease pain. To start, check out the National Cancer Institute’s guide on Learning to Relax. CancerCare also offers a free app with guided meditations, plus more than 100 hours of calming music and sounds.
6. Sexual rehabilitation is possible
In some cases, treatment for colorectal cancer may impact one’s desire or ability to have sex. This can be the result of chemotherapy, as well as radiation and surgery in the area of reproductive organs. In these cases, communication with your partner and the development of a personal action plan is necessary. Talk with your doctor about a referral for rehabilitation. Options include pelvic floor therapy, urology/gynecology, and sexual health and couples counseling. As you and your partner explore options, it’s important to keep conversations about sexual intimacy pressure-free.
7. Discuss palliative care early
Palliative care is specialized medical care focused on improving quality of life for both the patient and his or her family. While many people think of palliative care as an end-of-life step, conversations about how to improve quality of life can be had immediately after diagnosis and combined with curative treatment. Just because you’re battling cancer doesn’t mean the rest of your life has to go on hold! Discuss with medical professionals how you and your caregivers can keep up with normal activities and responsibilities.
8. Let go of survivor’s guilt
Survivor’s guilt is a common feeling among survivors of life-threatening situations, including cancer. Survivors may wonder why they survived when others did not. Feeling guilty is normal, but it’s an emotion that patients should work with others--including trusted caregivers, family members, and friends--to resolve. One tip to alleviate guilt: Make a list of things you value most in life, and then resolve to enjoy those things in honor of others lost and let go of guilt.
9. Caregivers need support, too
Caregivers experience unexpected emotions, including anger, resentment, shame, and guilt. These feelings are normal. Talk to people you trust and seek therapy if possible. You can’t be an excellent caregiver if you don’t take care of yourself. The Alliance also has a list of self-care tips here.
10. Use art to heal
Art therapy is a powerful tool for physical and mental healing. Patients, and even their caregivers, can use art to express themselves where words may fall short. Considered a complementary therapy, art therapy can also improve physical and cognitive issues resulting from treatment. Learn more about art therapy and find resources here on Verywell Health, and search for an art therapist at the American Art Therapy Association.