Mesothelioma Awareness – Part 5: What Surviving Means

Awareness // September 26, 2016

Today is Mesothelioma Awareness Day, and the Mesothelioma + Asbestos Awareness Center is participating in a number of events to spread the word about this dangerous disease. In the previous weeks, we have shared some articles about how mesothelioma affects patients, families, and others through things like being exposed to asbestos, how mesothelioma is diagnosed, some of the challenges faced during treatment, and building a support team. Today, we are looking at what mesothelioma survivorship means and the resources available for survivors.

While it’s true that mesothelioma generally has a poor prognosis, improvements in detection, diagnosis, treatment, and follow-up care have helped improve the survivorship of many mesothelioma patients, extending their lives for months or even years beyond the initial life expectancy.

For those who do manage to survive this terrible form of cancer, there are support and resources available. But before discussing those, it might be more important to address another question that many people with mesothelioma have.

What Does Survivorship Even Mean?

There is no officially set definition of survivorship. Although groups like the National Coalition for Cancer Survivorship have tried to influence the definition of the word, in many cases such definitions are far too clinical. They come up with definitions like, “from the time of diagnosis and for the balance of life, is now the norm for the cancer community and beyond. NCCS has expanded its definition of survivor to include family, friends and caregivers.”

The good news is that survivors can redefine what survivorship means in the way that works for them. Some survivors define survivorship from the day they learn they have mesothelioma and decide to fight the disease. Others define it from when they are deemed to be cancer free after undergoing treatment.

A relatively new concept is one not of the survivor, but of the “thriver.” A thriver is someone who doesn’t merely live after being diagnosed with mesothelioma, but who wants to live the best possible life they can. There have been some mesothelioma survivors who have gone on to run races, climb mountains, and do other inspirational activities – but it would be wrong to think only of those who can achieve these physical feats as “thrivers.” A thriver is someone who makes the best of their own individual circumstances and sets their own goals for themselves to achieve. Someone who has a lung removed during mesothelioma surgery may not be able to run a marathon, but instead they might visit with other cancer patients or work toward banning asbestos.

Resources for Survivors

Once a mesothelioma patient has defined survivorship in their own terms, they often look for the things that can help them become thrivers in their own situation. This includes some of the topics we’ve already talked about during this series:

  • Finding exceptional doctors and cancer centers who can help them get the level of care they need.
  • Building a support community that can help them with everything from daily care to transportation to appointments and other needs.
  • Getting financial help to pay for medical expenses and related costs, as well as to offset lost income for being out of work during treatment and recovery.

One of the things that many survivors do is develop a survivorship plan. This can be an invaluable resource, not only to help you remember all of the various details of your diagnosis, treatment, and follow-up care, but also can provide others with useful information in the event that you ever need to have someone intercede on your behalf.

A survivorship plan can be as simple as a notebook that records all of the pertinent details related to the mesothelioma survivor:

Contact information: Include not only your street address and phone number, but also email addresses, emergency contacts, workplace contacts, and even social media accounts you may use regularly.

Diagnosis information: If you have to see a new doctor or specialist, whether or not it is related to the mesothelioma, having details about your initial diagnosis can be extremely helpful. Include details about the types of diagnostic tests that were performed (along with the dates of each test), the results of each of those tests, and whatever comments your doctor or specialist provided about how the tests were to be interpreted.

Treatment information: Keeping a concise, up-to-date record of your treatments can also be helpful. It should include not only the major treatment events – such as surgery, chemotherapy, and radiation – but also follow-up visits, prescription medications you took, and other forms of curative or palliative treatment you received.

Appointments: Keep track of the appointments you have with your doctors, along with some notes about how each one goes, so that you and those who care for you will have a record of those conversations. This should include not only medical appointments for your primary mesothelioma care, but also appointments you may have with psychologists, support groups, alternative treatments (massages, meditation, etc.) and other similar engagements.

Lifestyle Changes: If you notice changes in any aspect of your health, diet, or other daily lifestyle habits, it is a good thing to note this in your survivorship plan. This can include things like appetite changes, fluctuations in your energy levels, psychological changes, or any changes in your medical or physical functioning that might not seem related to the mesothelioma, but which could indicate other problems.

One of the things that having a survivorship plan does is to get survivors thinking about the very aspects of surviving that can help them keep going. Being mindful of your health is the first step to staying healthy, and that is as true of cancer survivors as it is of anyone else.

We hope you enjoyed this series on mesothelioma awareness and have gained some useful information about how you can spread the word about this terrible disease.