Information for Family Members of Mesothelioma Patients

My Loved One Has Mesothelioma

If you’ve never heard of mesothelioma, you’re not the only one. It’s a less common cancer that inexperienced doctors sometimes misdiagnose. If your family member or loved one develops mesothelioma and starts showing symptoms, they may be diagnosed with one of three different types of cancer based on tumor location in the body. Mesothelioma tumors can grow in the lining of the lungs (pleura), the abdomen (peritoneum), and the heart (pericardium). Patients mostly develop pleural mesothelioma, with common symptoms including dry cough, chest pain, body aches, and fluid buildup around the lungs that don’t go away. If you notice a loved one has similar recurring symptoms, they should go to the doctor for tests and an official diagnosis as soon as possible.

How Did They Get Exposed?

When someone develops mesothelioma, it’s because they were exposed to asbestos, a mineral that occurs naturally in rock and soil deposits. Asbestos was once heavily used in many industries because of its resistance to fire, electricity, and chemical corrosion. It was especially utilized as fire-resistant insulation in homes, buildings, and military bases.

While most exposures to this carcinogenic mineral happen to employees at work (direct exposure), some exposure can happen to people through indirect means. This happens when someone comes directly in contact with crumbly asbestos and gets the tiny fibers on their clothes, skin, or hair, and then transfers those fibers to another person. Also known as second-hand exposure, it can happen to family members or friends of those frequently around asbestos workers or job sites.

What to Expect When Your Family Member Gets Mesothelioma

From symptoms and beyond treatment, there are several parts of the cancer journey where the patient may need support. It can be helpful to know what to expect when your loved one begins developing symptoms of mesothelioma or other cancer. Here’s what can happen at each stage of a patient’s mesothelioma timeline:

1. Symptoms – They notice chronic or recurring symptoms that last extended periods and decide to go to the doctor for tests and exams.
2. Diagnosis – After performing tests and having results sent into a lab, the doctor will assess the data and come up with an official diagnosis. Your family member or friend will gather all accessible information and work closely with the doctor on a treatment plan.
3. Treatment – The cancer care team administers treatments and therapies to the patient. After the last scheduled session or appointment, treatment is considered completed. Sometimes the doctor will order more if initial therapies didn’t remove all tumors.
4. Post Treatment – Your family member will be in recovery from cancer and subsequent treatment. Their lives will be different now, with them having to figure out a new “normal.”
5. Second cancer – In the instance new cancer develops or old cancer comes back, family members will need as much support as possible. They may go back to the doctor to discuss other treatments or palliative care options instead.
6. Palliative Care – If second cancer develops or current cancer is beyond treatment, the doctor may recommend palliative care. This type of therapy focuses on improving the quality of life of the patient during the time they have left, instead of curing the disease. Palliative care can encompass treatments that relieve pain or other symptoms associated with mesothelioma and treatment. The doctor may recommend palliative care if the mesothelioma tumors have progressed too far, the patient is in poor health, or has gone through treatment without success.

Each mesothelioma patient is different and will have varying experiences throughout their cancer journey. As their family member, all you can do is be there for them when you can and try to avoid burnout by remembering to take care of yourself too.

Resources and Support for Family Members

Cancer care organizations have put together helpful resources for family members of mesothelioma patients. Groups that provide support for mesothelioma patients and their family members include:

• American Cancer Society
  800-227-2345
• Cancer Care
  800-813-4673
• Cancer.Net
  888-651-3038
• The United Way
  800-813-4673

Areas of support these organizations offer are:

Emotional

Both mesothelioma patients and their family members or caregivers can experience emotional distress after a cancer diagnosis. This can include feelings of depression, fear, stress, and anger among other things. There are support groups, communities, therapists, and psychiatrists available if the patient or their loved ones need additional emotional support.

Financial

When someone develops mesothelioma, they usually have to leave work because they are too sick from the illness or treatment. If this happens, family members can be left to cover the costs of the medical bills as well as other monetary obligations the patient and their family may have.

Some financial assistance companies for people with cancer and their families can help with medical bills, insurance, and reimbursement problems that may happen. There also exist co-payment organizations and assistance programs to help pay for the cost of the patient’s medications and general expenses related to cancer. This can include housing/lodging, transportation, child, home, and hospice care.

Family members of veterans who develop mesothelioma may also be eligible for financial compensation from the Department of Veterans Affairs (VA) and other non-profit organizations under specific circumstances.

Legal

If your family member was diagnosed with mesothelioma due to negligent exposure from their job and passes away, you may have legal rights. As a family member, you could file a wrongful death claim on their behalf. These types of claims provide financial restitution to family members of mesothelioma patients who have died and need help to supplement the income lost from their deceased loved one.

Get a free case evaluation from one of our experienced mesothelioma attorneys, they’ll be able to assess your situation and tell you if taking legal action makes sense for your circumstance.

Common FAQs from Family Members and Loved Ones

If you’re walking alongside your loved one during their mesothelioma journey, you might start to have some questions about their condition, what it could mean for them or you, what comes next, and more. Common FAQs from mesothelioma patient family member’s are:

1) How can I help a family member with mesothelioma or cancer?

Finding out family members have mesothelioma or other cancer is a troubling time where the loved one is left wondering how they can help make the situation better for the patient. It’s best not to get too stressed out about things you cannot control, and focus on what you can do without pushing yourself beyond your limits. Ways a patient’s family members can help support them during their mesothelioma timeline can be to:

• Occasionally assist with groceries, cleaning, or other errands around the house like laundry, bill payment, and things that keep the patient’s daily life in order.
• Stay connected. Stop by for a visit sometimes to keep the patient company and provide a listening ear if they want to talk about anything. You don’t always have to know the right answers, but it can be greatly beneficial for the patient to know they have someone around who cares and will just hang out and listen without expectations. You can also call them, send texts, or messages in-between visits too if possible.
• When you can, take the patient to doctor appointments and treatment sessions. This can help ease the anxiety that sometimes comes to patients when they go to doctor visits and therapy. Take notes on things the doctor says when appropriate, the patient may have lapses in memory during and after treatment.
• Try not to treat the patient like they are sick. Many times, cancer patients don’t want others to feel sorry for them or act different and just want to feel like things are back to normal. A few hours of joking around, spending time, and talking like before the diagnosis can be a great distraction and relief for the patient.

If you can’t help with some or any of these things, that’s okay too. The patient will usually appreciate any love and support you give during this time. On the other hand, if you have the resources and capability, you could be the caregiver of your sick family member.

2) What’s a caregiver and what do they do?

When someone is a caregiver for their family member, loved one, friend, or even a stranger, it can take the same time and effort as a regular job. Caregiving is when a person regularly helps a cancer patient with everyday tasks and activities that may be difficult or impossible for them to complete in their condition. This person is generally unpaid and untrained for the job but assumes the role because their sick family member may not have anyone else and really needs assistance. Some things a caregiver can help with include:

• Cooking and cleaning
• Giving drugs and medications
• Reporting problems and communicating with the cancer care team
• Providing transportation to appointments, treatments, and other errands
• Keeping patient comfortable at home and in the hospital

As a caregiver, you’ll be a vital health resource to your loved one. Ask the doctor plenty of questions about best practices and how to avoid caregiver compassion fatigue. To provide the best support to sick family members, you must also practice self-care.

3) How do I find more resources?

Doing research on mesothelioma can sometimes require a lot of work. Local resources can be found through:

• Your Cancer Care Team –
  Doctors, nurses, and social workers have a lot of helpful information and resources at their disposal. They’ve had mesothelioma and cancer patients before, so let their experience guide you. Libraries at cancer treatment centers also have useful information available to patients and their loved ones. Other medical professionals you can learn more from include hospital community workers and discharge planning coordinators.
• The Local / County Government –
  Local governments usually have low-cost transportation options for patients and people in need. Government agencies can also give you details on attaining monetary assistance like social security, state disability, Medicaid, income assistance, and food stamps.

4) How long will my loved one have to live?

The doctor will diagnose the patient and give a prognosis to determine this. A prognosis will encompass how the doctor thinks the patient’s tumors may develop, how they’ll react to the treatment, and the patient’s survival rate. All factors vary based on the patient’s general health, stage in cancer, and treatments. Mesothelioma patients in earlier stages like 1 and 2 have a higher survival rate, while patients with later stages like 3 and 4 have worse prognosis. Talk to your doctor about your family member’s condition and they may be able to give you a more specific range.

5) How will we pay for treatment?

Mesothelioma patients and their family members may be entitled to financial compensation from the companies responsible for asbestos exposure. Talk to an experienced mesothelioma attorney about what compensation options you and your loved one may have.

6) My sick family member is a veteran, could they have been exposed to asbestos while on the job?

Asbestos was once heavily used in all branches of the military in several capacities until the late 1970s. Veterans make up one-third of mesothelioma patients diagnosed and they and their families may qualify for financial assistance from the VA or other non-profits.

Next Steps for Families Affected by Mesothelioma

When a family member is diagnosed with mesothelioma or other serious illness, it’s important to know what resources and support are available to the patient and their loved ones. Talk to your doctor or oncologist if you are a family member of someone with cancer and need help managing.