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No matter how you define survivorship, one of the things that many survivors of mesothelioma and other deadly cancers includes developing a survivorship plan. Such plans are beneficial for the survivor, their family members and friends, as well as for doctors and other medical professionals who may be involved in providing care in the future.
From a practical perspective, a well-kept survivorship plan will catalog all the medically relevant aspects of your care. This helps ensure that follow-up monitoring, treatments, and preventative strategies are as effective as possible.
Recording Your Plan
You can create your survivorship plan using any method you that is convenient for you, such as a notebook or binder.
The most important consideration is that you will want someplace to put papers you get from your doctor, such as instructions or pamphlets or other items. Having a designated folder or binder with pockets where you can store both your own notes and pre-printed information is critical.
Survivorship Care Plan Components
In 2005, the Institute of Medicine created the first detailed recommendation for creating a survivorship care plan. The recommendation suggested that all of the following components be included in the plan:
Contact Information: Being able to reach your primary care doctor or specialist is important, especially in case of emergency. Keep multiple points of contact for both the doctor individually and any hospitals, clinics, universities, practices, and/or other institutions they are associated with. This includes:
- Street addresses
- Email addresses
- Primary phone numbers (office and mobile)
- Emergency phone numbers
Diagnosis: Having information about the original diagnosis may be extremely important later, especially if the tumor changes in any way or even – hopefully – goes away. This includes recording all of the following information:
- Types of diagnostic test performed
- The date each test was given
- Complete results from each test
- Interpretative or diagnostic comments about the tests from your doctor
Tumor Details: In addition to the diagnostic information provided above, you should record information about your tumor. This includes:
- The cancer type
- Where it’s located within your body
- Stage of the cancer
- Histological information
Treatment Information: After the diagnostic information, it’s particularly important to keep a record of any and all treatments you receive. The types of treatment will likely differ depending on the type, location, and stage of the cancer. However common treatments will include:
- Surgical removal (whole or partial) of the tumor or organs containing the tumor
- Transplants of affected organs
- Chemotherapy drugs
- Radiotherapy (or radiation therapy)
- Gene therapies
- Experimental treatments or clinical trials
Be sure to include any and all other medical treatments that occur during the same time, even if they are routine examinations not directly tied to your cancer treatment. For each treatment it’s important to capture the following information:
- Date and time of the treatment
- Any dosage information
- Responses to the treatment, including physical, psychological, or emotional reactions
- Toxic, allergic, or sensitive reactions
- Clinical trial number and names (if applicable)
Appointments and Consultations: Treatments may or may not align with appointments. Either way, it’s important to keep track of all the times you talk with your doctor, specialist, or another medical provider about your care. This includes all of the following types of contact:
- Scheduled appointments, including routine checkups and treatment-specific appointments
- Unscheduled visits to an emergency room, urgent care facility, or even a walk-in visit to your primary care provider
- Home visits by a nurse, physician’s assistant, or other care provider
- Mail, telephone, email or other communications
- Pharmacy visits where you discuss your prescription with a pharmacist
- Consultations with psychologists, nutritionists, or similar types of support professionals
Lifestyle Changes: It’s very important to understand how your body and mind are reacting to your cancer treatment. As best as you can, try to take notice of any major lifestyle changes that occur in relation to your treatment, such as:
- Changes in appetite, energy levels (e.g., excessive fatigue), or loss of functionality in one or more parts of your body
- Psychological changes, such as depression, or cognitive difficulties
- Changes in fertility, menstruation, or menopause for women, or sexual changes in either women or men
Any other lifestyle changes that seem significant should be noted.
Point of Contact/Care Coordinator: In addition to all of the tracking information above, it’s just as important to have a place where information about your secondary point of contact and care coordinator is. This may be a spouse or other relative, a good friend, or someone else whom you trust to act on your behalf in the event that you may not be able to speak for yourself.
If you intend to list multiple points of contact or care coordinators, it is also important to include a designation of who has the final say in matters, should any disagreement occur.
Other Items to Track
While we’ve tried to make guide as comprehensive as possible, there is no single template that can be used for every survivor. Every person will experience their own individual situation, from type and stage of cancer to how well it responds to certain treatments.
Therefore, you may want to consider putting additional information in your survivorship care plan. Basically, anything that seems like it might be relevant to your treatment and survivorship is essential. Also, you can ask your doctors what information they would like to see, as they may need to refer to the plan in the future.