Dr. Toufic Kachaamy, Chief of Medicine and Director of Gastroenterology at City of Hope, Phoenix, and member of the Coalition’s Medical Advisory Council, walks you through important things to know that can help you after the shock of a colorectal cancer diagnosis.
Facing a colorectal cancer diagnosis is challenging, but taking these steps can help you feel more in control. Remember, you are not alone on this journey – there are resources and people ready to support you every step of the way.
Emotions are normal. Take the moments and time you need to process the information. Your friends and family want to help, don’t hesitate to lean on them for support.
Stress may affect your memory. Bring someone with you to appointments and take notes. Talk to your doctor about any concerns, and ask for assistance remembering difficult terminology or treatment information.
Support groups can be a lifeline during this time. To help with your mental health during this difficult time, consider joining support groups in your area or virtually. We have partnered with Cancer Hope Network and The After Cancer App who have resources for you. Others such as Colontown and Man Up to Cancer offer other specific communities and resources that may help support your specific needs.
And if you haven’t already, consider finding a mental health professional who can help you process and manage the emotions and stress that can follow a cancer diagnosis.
Knowledge is power, especially when it comes to your health.
Talk to your doctor about the stage of your cancer, and ask about biomarker testing and treatment options. Every diagnosis is unique. Your treatment may look different than others with a similar diagnosis. Speak with your doctor to understand what your diagnosis means for your long-term health and what your treatment plan and side effects could look like.
A strong understanding of your diagnosis is the key to advocating for yourself at the doctor’s office.
Second opinions can be a good way to make sure you are comfortable with your treatment plan. Your care team should understand and support your decision to get additional perspectives on your diagnosis and treatment options. Many providers encourage their patients to get a second opinion, as it can provide new insights into your care.
A second opinion may confirm your initial diagnosis and make you more confident in your original oncologist’s recommended treatment plan. Or it may provide additional information and insights into your diagnosis and provide a wider range of treatment options. This new information and additional opinions could avoid unnecessary treatment, or help find a promising clinical trial.
A second opinion can help you will find additional peace of mind and feel more control over your treatment and care.
An NCI-designated cancer center is a good place to start when looking for a second opinion.
What is important to you regarding your cancer care? Cancer care is complex and requires a team of experts. Choosing where to get your treatment is an important decision to ensure your treatment plan aligns with your priorities. Ask your doctor about their approach to multidisciplinary care.
When choosing your cancer care team consider what you heard from all the doctors you have talked to. Did the two providers agree about the diagnosis, stage, and treatment recommendations? How did they differ? Who did you have a good relationship with? Did they answer your questions? Does their care plan align with your treatment goals?
Talk with your local care providers about how they may work with NCI-designated cancer centers or other care centers. Many large institutions will work directly with local hospitals and providers to implement a care plan closer to home to lessen travel relieve stress on the patient. This can be especially important in rural areas.
If you get the same opinion from your “first” and “second” opinions, it may be easy to choose based on location and insurance. Insurance is always a consideration. Talk to your insurance provider about in-network providers, additional costs, etc.
There are two groups you should discuss your diagnosis with: your employer and your friends and family.
Talk with your primary caregivers and organize a plan that respects your boundaries and fills your immediate needs as you process new information.
Rather than texting or calling everyone personally, you can sending an email to friends and family. It’s OK to set boundaries and let people know what you’re looking for support-wise. Meal trains, childcare, grocery pick up, etc. are all excellent ways your friends and family can support you as you begin treatment. Some patients choose to designate a close family member or friend to be the primary point of contact for meal coordination and other support offered by the community.
Talking to your employer may feel daunting, especially if your diagnosis directly interferes with what type of work you can complete.
Be honest with your employer about your diagnosis, and the accommodation you may need on the job. As you navigate your cancer diagnosis and treatment you may find it hard to complete ordinary job functions. Be aware of workers’ rights in your state, and advocate for your needs as an employee. People with cancer are protected in the workplace by the Americans with Disabilities Act and the Family and Medical Leave Act.
Check with the U.S. Department of Labor for laws about working through cancer treatment or taking a protected leave of absence from your work place.
Cancer and Careers may also be able to help.
