Importance of Mesothelioma Cancer Survivorship Care Plans

Cancer & Caregiving
Survivorship care plans

The details of your mesothelioma cancer treatment can be overwhelming.

It is a challenge to remember complicated drug names, surgery details, potential side effects and long-term health issues associated with your cancer treatment.

Cancer survivorship care plans help patients keep track of these details and communicate with their health care providers. A good survivorship plan may improve your health care after a mesothelioma diagnosis.

These documents are important because they track your current treatment and potential future medical care needs.

Cancer treatment facilities are supposed to complete cancer survivorship care plans for every patient. Unfortunately, these plans aren’t provided for the majority of patients.

The purpose, completion and delivery of these plans were hot topics among cancer experts at last week’s American Society of Clinical Oncology (ASCO) Cancer Survivorship Symposium in Orlando.

No Consistency in Cancer Survivorship Care Plans

The Institute of Medicine first recommended every cancer patient receive an individualized cancer survivorship care plan in 2006.

ASCO, the American Cancer Society and the National Comprehensive Cancer Network provide examples of cancer survivorship care plans. Despite these efforts, the majority of patients still are not getting a plan.

At the symposium, Dr. Paul Jacobsen of the National Cancer Institute (NCI) shared results from a review of 24 studies on cancer survivorship care plans.

The findings are not encouraging.

Only 43 percent of NCI-designated cancer centers — among the best cancer care facilities in the country­ — provided these plans to patients, Jacobsen said. Just 1 in 5 oncologists provided these plans, noting lack of time and resources as barriers.

Patients who received a cancer survivorship care plan had the same levels of anxiety, psychological distress, depression, and quality of life as the patients who didn’t get a plan, according to Dr. Jacobsen.

In summary, cancer survivorship care plans weren’t provided consistently. When plans were provided, they failed to improve health care and quality of life for cancer patients and survivors.

If mesothelioma cancer survivorship care plans don’t work, why do you need one?

We need them because many health care providers agree that when they are properly created and used, these plans can be lifesavers for cancer patients, including people with mesothelioma.

Maximizing Your Mesothelioma Cancer Survivorship Care Plan

The negative findings about cancer survivorship care plans presented at the recent ASCO meeting may discourage your doctor from raising this issue. But you should ask for a cancer survivorship care plan anyway.

With a little attention to the issue, you can work with your cancer health care team to create a mesothelioma survivorship care plan that works for you.

As you start treatment, ask the team to document everything from the beginning.

Be persistent and ask that your plan be updated after every visit.

For example, if a new drug is added to your treatment, tell your doctor, “I see you’ve added a new drug to my treatment. Are there other side effects I will need to worry about long term? Has this been added to my cancer survivorship care plan?”

For your mesothelioma cancer survivorship care plan, ask about:

  • Contact information for your health care providers, including medical and radiation oncologists, surgeons, nurse practitioners, physician assistants, and specialists (physical therapists, dietitians and others)
  • Your follow-up tests and appointments and how often to follow up
  • Possible short- and long-term health issues related to your mesothelioma treatments your primary care provider needs to know
  • Generic and brand names of drugs you received for treatment and any surgeries performed
  • Any radiation treatments you received, and the parts of the body treated or affected by the radiation, including organs in the path of radiation exposure

Ask a loved one or friend to help keep track of other key information. This could include writing down your diagnosis date, your mesothelioma cell type and genetic tests performed on your tumors.

Many patients find it helpful to understand how to obtain results of important lab tests and imaging scans such as X-rays, CT and PET scans and MRIs. Find out where these records are stored and how to request copies.

Additional Ways to Improve Your Survivorship Plan

Ask for printed and electronic copies of your mesothelioma cancer survivorship treatment plan. Add the following information to your plan:

  • Any nonmesothelioma-related medications you take such as drugs to manage cholesterol, blood pressure, pain, diabetes and other chronic conditions
  • Your blood type
  • Your use of tobacco, alcohol, other drugs or substances
  • Your use of dietary supplements, herbs or other complementary or alternative medicine treatments.

Mesothelioma cancer survivorship care plans are an important part of your treatment.

Many health experts agree: When done correctly, survivorship care plans do help cancer patients get the best care after a challenging diagnosis.

paper with magnifying glass
Get Access to Free Resources for Patients & Loved Ones
Free Mesothelioma Resources