Finding Your New Normal in Remission

Advances in mesothelioma treatment are showing significant promise in helping more patients achieve remission. It’s certainly good news that more people are living longer after being diagnosed with mesothelioma. However, there can be some unexpected challenges that mesothelioma survivors face as well.

After the shock of a mesothelioma diagnosis, the physical trials of treatment and the mental health hurdles of life with a malignant cancer, finding a “new normal” in remission can bring its own unique stress. Sometimes the process of adjusting to life in mesothelioma remission can take longer than expected. 

At What Point Are You Considered in Remission?

To be considered in remission after treatment for mesothelioma, there must be a 50% reduction in tumor load after surgery or systemic treatment such as chemotherapy. While not everyone is eligible for procedures such as hyperthermic intraperitoneal chemotherapy or medications such as immunotherapy drugs, a growing number of patients who have benefited from these modalities are experiencing remission. 

Sometimes patients can even achieve “NED,” which means no evidence of disease. This doesn’t necessarily mean that all the mesothelioma is completely gone. It means that scans or other tests can’t detect any disease. 

It’s understandable that patients want to be completely cured of mesothelioma. But being in remission or NED is a very positive outcome. 

Mesothelioma, Treatment and Remission

Mesothelioma survivors may have periods of time where they’re not in active treatment. After recovering from surgery and completing any systemic treatment, people are regularly surveilled for disease progression.

Some patients are offered maintenance chemotherapy or immunotherapy. Maintenance treatment is typically less intense in terms of side effects. 

Some mesothelioma patients can remain on their maintenance therapy indefinitely. Timing depends on whether or not they’re tolerating the treatment well and the disease remains well-controlled or stable. 

Expectations and Remission

Some mesothelioma survivors are encouraged to “get back out there and live your life” once mesothelioma is in remission after aggressive treatment. This is often easier said than done. 

Usually, mesothelioma treatment has taken a physical toll on the body and survivors may experience fatigue, shortness of breath, post operative pain and body image issues. It usually takes weeks or months to recover, which can be frustrating.

Loved ones may be so excited to hear that the mesothelioma is in remission that they want to celebrate with traveling, socializing or other activities that the mesothelioma survivor may not be ready for yet. It’s common for mesothelioma survivors and their loved ones to have different expectations after treatment is over. 

Misunderstandings and frustration can result if there isn’t good communication. It’s important for the mesothelioma survivor to express how they’re feeling, what they’re able to do and what they want to do as they recover.

Mental Health: Managing Anxiety About Recurrence

While most mesothelioma patients would agree that surgery and chemotherapy is very challenging, it can bring some comfort knowing that you’re actively doing something to battle the cancer. Many survivors have shared that it’s a little scary not being in treatment because of fear that they’ll experience mesothelioma recurrence.  

Making plans for the future takes on a new meaning for many people recovering from mesothelioma treatment. Many survivors have said that they feel reluctant to make plans for next week or even next year because they’re fearful that they won’t feel well enough to fulfill those plans or that they’ll be back in active treatment. 

Everyone who is diagnosed with mesothelioma hopes for successful treatment and remission. But, being in remission may feel like being in limbo for some mesothelioma survivors. 

Life isn’t the same as it was before a mesothelioma diagnosis, and it’s certainly not like being in treatment. Mesothelioma survivors are tasked with learning to live with uncertainty after finishing treatment. Finding resources for you and your family can help.

Speaking with other mesothelioma survivors can be beneficial in finding your new normal. Our monthly support group is a great way to meet others with similar experiences. 

Our support group takes place online. For those with limited internet access, you can still participate over the phone.

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