Topic: Gastrointestinal cancer survivorship in younger adults includes challenges often overlooked

What is cancer survivorship?

Cancer survivorship begins at diagnosis and continues throughout a person’s life. It includes decision-making before treatment begins, completing treatment, coping with side effects, adjusting to lifestyle changes and managing worries about the cancer coming back (recurrence).

Survivorship is different for everyone, depending on their cancer, treatment and personal circumstances. Survivorship is not just living after cancer; it also includes the physical, emotional and practical challenges that may continue after diagnosis and treatment.

What are gastrointestinal cancers?

Gastrointestinal (GI) cancers are cancers in the digestive system, including the colon, rectum, pancreas, liver, stomach, gallbladder, appendix and esophagus. Colorectal cancer is the most common type of GI cancer.

Cancer survivorship through the eyes of a colorectal cancer survivor

The presenter, Dr. Shruti Rajest Patel, began her talk on GI cancer survivorship with a response to a question on social media. Patient advocate and colorectal cancer survivor Allison Rosen asked, “What is something about survivorship that doctors don’t always see but is a major part of your daily life?”

One response summarized what Dr. Patel was hearing from her patients:

“For me, it is the mental toll and late effects of cancer treatment that were not dealt with at all. I don’t remember where I read this, but it rings true. When you are diagnosed, it’s like your house has been set on fire, and your medical team rushes in to hopefully put out the fire. If they succeed and you live, they all leave you, and you find yourself standing in a burnt-out shell of a home.”

Although the presentation from Dr. Patel focused on GI cancer survivors who were diagnosed before the age of 50 (early onset), these issues can be concerns for survivors of all ages and cancer types.

Survivorship issues

Cancer survivorship issues that patients with early-onset GI cancer want their doctors to discuss:

Fertility

About 23% of patients with colorectal cancer experience damage to their reproductive organs (testes in men, ovaries in women) from treatment. Rates vary dramatically by treatment (4% for chemotherapy alone and 68% for chemotherapy plus radiation). This can lead to trouble having children due to fertility challenges, hormone problems, and, in many cases, permanently losing the ability to have children.

Damage to reproductive organs is more common in women than in men. The combination of chemotherapy and radiation therapy is more damaging than either treatment alone.

Possible solutions to discuss with your doctor before treatment include:

• For women: A surgical procedure that moves one or both ovaries from the pelvis and into the upper abdomen, away from the field of radiation therapy. Referral to a fertility specialist to discuss options for fertility preservation before treatment.
• For men: Sperm banking (freezing sperm before beginning treatment).

Read more about fertility issues in these XRAY reviews and on the FORCE website.

Sexual Health

Up to 75% of rectal cancer survivors report long-term sexual health issues.

• For women, this can be the result of vaginal scarring or fibrosis and radiation-related damage to the ovaries.
• For men, many will have trouble maintaining an erection (erectile dysfunction) or with ejaculation.

Fewer than half of these patients discuss sexual issues with their doctor.

Possible solutions to discuss with your doctor include:

• For women
  • Pelvic floor physical therapy
    • Read more on how pelvic health therapy can improve quality of life here. 
  • Dilator therapy
  • Vaginal estrogen
• For men
  • Pelvic floor physical therapy
    • Read more on how pelvic health therapy can improve quality of life here. 
  • Medications such as Viagra (sildenafil)
  • Penile pumps

Read more about sexual intimacy and cancer in these XRAY reviews and on the FORCE website.

Financial Toxicity

Financial toxicity refers to the financial impact and stress caused by medical care expenses, especially due to chronic or long-term health conditions.

Both uninsured and insured patients may experience financial toxicity. Compared to patients diagnosed with colorectal cancer at average or older ages, younger patients with colorectal cancer are more likely to experience:

• limited or uncertain access to nutritious food (food insecurity).
• delays or inability to pay for necessary medical care.
• delays or inability to fill prescriptions.

Discuss with your doctor how to access dedicated financial services, such as meeting with a social worker. These services have been shown to help reduce stress and improve well-being.

Read more about the financial impact of cancer care in this XRAY review.

Work and Employment

Younger survivors of GI cancers are less likely to be employed than people without cancer.

If you are concerned how your survivorship will affect your work and employment:

• Consider asking your doctor to bundle appointments.
• Plan follow-up scans/screenings, which are often ordered months in advance, around your work schedule.
• Discuss with your doctor what a gradual return to work might be like.

Planning ahead can help reduce stress.

Read more about employment and cancer in these XRAY reviews.

Ongoing Physical Issues

Up to 80% of colorectal cancer survivors have persistent GI symptoms, which can include bloating, constipation, diarrhea and pelvic pain.

People who have rectal cancer and have surgery to remove all or part of the rectum may develop low anterior resection syndrome or LARS. LARS symptoms include irregular or unpredictable bowel movements, such as an urgent need to pass stool, watery stools, and increased gas. The NCCN and the American Cancer Society provide patient guidelines for those with rectal cancer and colorectal cancr which discuss LARS.

Other physical issues may include chemotherapy-induced damage to the nervous system (peripheral neuropathy), ostomy (an opening in the stomach that allows waste to exit the body), adjustment(s), and additional cancer surveillance for those with hereditary cancer syndromes such as Lynch syndrome.

Before surgery, talk with your doctor about recovery expectations, including whether you should contact a dietician or nutritionist for related support. Knowing what surgical recovery may be like, what unexpected symptoms may occur and receiving educational materials can reduce anxiety and improve overall quality of life.

Mental Health

Cancer patients are  2-4 times more likely to experience mental health issues such as anxiety and depression compared to the general population. For patients with GI cancers, mental health challenges are often due to the stress of complications after surgery.

If you are concerned about your mental health:

• Make sure you have routine mental health screenings during doctor’s visits.
• Ask for a referral to mental health providers, such as a therapist or psychiatrist.
• Let your care team know if you experience scanxiety (anxiety before, during or after imaging tests). Ask your doctor for quick turnaround times between scans, as well as results and clear communication about next steps.

Exercise/Physical Activity

The CHALLENGE trial showed that structured exercise may reduce death and recurrence in colon cancer survivors.  Read more about this trial in our XRAY review here.

What does this mean for me?

Research is ongoing to help GI cancer survivors live longer, healthier lives. Doctors, nurses and researchers are working together to find better ways to manage side effects, provide emotional support and improve quality of life. Survivorship care is now a key part of cancer treatment and recovery, and resources are available to help patients and families navigate life after cancer diagnosis.

If you or someone you know is living after GI cancer, remember that help is available. Talk to your healthcare team about survivorship care and seek resources to help you live your best life after cancer. The Resources tab above offers information and support groups about several survivorship issues.

Cancer survivorship is not just life after cancer. It is a journey that begins at diagnosis, continues throughout a person’s life, and may require support throughout every stage.