The Survivorship Experience

What is survivorship?

Survivorship is a term used to describe people living with Cancer, in treatment for Cancer, who have no evidence of disease after cancer treatment, people receiving treatment for a longer period to reduce risk of Cancer returning, and people with advanced Cancer. The word “survivorship” may not fit your view of the experience you had. You may have a different word to describe your experience or current situation. Some folks will use some of the following words/phrases to articulate their unique situation:

• A person who has had cancer.
• A person who is/was impacted by cancer.
• No evidence of disease.
• A person living with cancer.
• And many more variations! No phrase or word is wrong if it is comfortable for you.

Common Challenges in Survivorship:

When diagnosed with Cancer, many things change, and it may be difficult to cope with some of the changes that occur. Then if you transition into the no evidence of disease phase or when your scans and bloodwork indicate that you do not have Cancer in this moment, it can be challenging to accept this and face the adjustments that will follow this change. Many folks who transitioned into the no evidence of disease phase have told me that they feel isolated and alone because they lost the consistent follow-up with their medical team. Sometimes they may not be able to reach their medical team to ask questions and feel like there were no concrete instructions provided for this phase. Regardless of where you are at on the Cancer spectrum, acceptance and adjustment may be difficult. Some of the most common challenges that may show up for folks in survivorship may be:

• Fear of cancer recurrence: Given that you have experienced a Cancer diagnosis, it is normal to fear that the cancer may return. A Cancer diagnosis may be a traumatic event for you due to the treatment and its side effects, Cancer symptoms, or fear that the treatment may not work. The thought of going through that again may initiate fear around a recurrence.
• Scanxiety: Fear of Cancer recurrence and scanxiety may coincide with one another. The suspense of waiting for an upcoming scan and then the results can be quite distressing. The uncertainty around whether the scan will show no evidence of disease or something different may create an increase in anxiety.
• Survivor’s guilt: Some folks feel guilt around the fact they had better outcomes than others as it related to the Cancer diagnosis and treatment. This is a common emotion and may create some disruption in your ability to move forward in your own journey/process.
• Uncertainty for the future: Many folks report that they do not want to plan any vacations, large events, or larger future endeavors because they do not know what might happen in the future. While a Cancer diagnosis will bring this into focus, many of us do not know what the future might hold. It is important to live by your values and enjoy life to its fullest.
• Concerns around long-term treatment effects: Some folks feel as though they are abandoned by the medical system once they finish treatment or are on a treatment regimen that will last a while. It is important to discuss this feeling with your medical provider and request that they provide referrals to a wide variety of medical professionals to assist you in recovery. This may look like receiving referrals for a physiotherapist, occupational therapist, social worker, naturopath, or any other specialists that can help with lasting treatment side effects.

While there are challenges associated with survivorship, sometimes there are benefits as well. With time, you may experience more joy and less of the challenges. Some folks report feeling a new clarity on life’s purpose and tend to prioritize joyful experiences in their lives. Others may engage in giving back to the Cancer community by getting involved in patient groups such as Colorectal Cancer Canada. Whatever it is you feel, please know that it is not abnormal.

How can I manage the challenges associated with survivorship?

If you are struggling with any of the challenges listed or not listed, please reach out to our support team at Colorectal Cancer Canada. They have two social workers on staff who can support you as you navigate the experience of survivorship. We have several resources and strategies to overcome any concerns you may have. We can offer counselling, referrals, resources, advocacy, and so much more. We would love to hear from you!

Reference:

https://www.cancer.net/survivorship/what-cancer-survivorship