What do you think of when you hear the word Mesothelioma?  For many, the word brings to mind televised warnings from legal firms urging you to contact an attorney if you or a loved one has been diagnosed with this rare form of cancer or been exposed to asbestos.

Often referred to as an  “old man’s “ disease, mesothelioma predominantly affects males following occupational exposure to asbestos.   The ubiquitous use of asbestos as a construction material prior to its regulation and ban in the late 1980s means it may be found in buildings in almost every city and town throughout the world.  It has been used in paints, wall and ceiling textures, insulation, floor and roof tiles, plaster, siding and many other building materials found in homes, schools and public buildings.

As a result of the collapse of the World Trade Center Towers, more than 1,000 tons of asbestos are thought to have been released into the air and inhalation of a mixture of asbestos and other toxicants are thought to be linked to the unusually high incidence of cancer and cancer-related deaths of emergency and first responders to the 911 disaster.

Mesothelioma in Children

Although rare, medical research has noted the development of mesothelioma in children since at least the 1960s, when asbestos was first scientifically linked to the disease.  The affected children had not reported exposure to asbestos, however, given the rampant use of asbestos in construction and everyday products cited above, it is likely those children were unknowingly exposed

Mesothelioma is always aggressive, but there is significant evidence that it may develop more quickly in children and young teenagers than in older adults.

Signs and Symptoms

Because of the rarity of this diagnosis in children, symptoms of mesothelioma may be easily confused with more common conditions resulting in a likely scenario of one or more incorrect diagnoses before considering mesothelioma.

Symptoms in children are similar to those experienced in adults and may include:

•       Shortness of breath
•       Chest pain
•       Fatigue
•       Abdominal pain
•       Loss of appetite
•       Fever
•       Unexplained weight loss

It is not uncommon for rare forms of cancer to be misdiagnosed while valuable time is wasted searching for the correct diagnosis.  If you are having doubts regarding a diagnosis and would like assistance in securing an expert opinion consider seeking the guidance of a private medical advocate.  How a Private Advocate can help

Fortunately mesothelioma in children is rare; however, it is a tragic illness without a clear answer as to how and why children are affected.  The limited number of cases makes research difficult, however, it is only through research that we will uncover the risks and better treatments for adults and children.   To Learn More about Mesothelioma

In 2011, the Gallup-Healthways Well-Being Index reported that more than 1 in 6 Americans working full-time or part-time was assisting with the care of an elderly or disabled family member, relative, or friend.

Today, 7 years later, complex cancer care is shifting away from the inpatient hospital setting and moving into the home.   Now more than ever the availability and support of family caregivers is a significant factor in the world of Oncology and putting additional strain on the American workforce.

I recently read the results of a study published in Clinical Journal of Oncology Nursing, that was designed to better understand the needs and quality of life concerns of those providing care to a loved one with cancer.

Some common themes that arose from the interviews conducted as part of the study fell into 7 aspects of care.

Physical: Over all, family caregivers expressed a desire to understand the patients’ needs as well as be present, attentive and reassuring. The most repeated theme was the presence of and difficulty of dealing with treatment-related side effects.

Psychological:  Uncertainty was a common theme that often gave way to anxiety, stress, and feeling overwhelmed. Many caregivers expressed a desire to be present and offer support even as they faced a lack of emotional energy.

Social: A recurring topic among family caregivers was social isolation, felt both by the one being cared for and the caregiver. Caregivers reported needing support and not just information.   A quote from one caregiver,

“ The details about the clinical trials available online needed to be supplemented with a person who could answer questions. “ This caregiver found the information to be confusing, overwhelming and largely indecipherable: “ It’s just a lot of literature that I have no idea about.. I did not go to med school; I don’t know what I’m reading. I need help”

Spiritual: Having a faith community reported to provide a source of support for some caregivers.

Financial: There were many costs associated to care, but the most commonly reported were the expenses of last minute flights, gasoline, overnight hotel stays, restaurant meals, and time lost at work. Even those who reported having healthcare coverage and financial stability voiced anxiety about the financial impact.

Caregiver Self-Care: The majority of the respondents were neglecting self-care in order to care for their loved ones. Many reported a lack of sleep and exhaustion.

The results of this study provide evidence for greater emphasis to be placed on the effects of caring for a loved one with cancer have on family caregivers.

The family caregivers participating in this study voiced their need for support and resources.   A Board Certified Private Advocate could supply some of the much-needed support by:

• Helping the family caregiver understand the disease and better anticipate the side effects associated with their loved one’s treatment eliminating much of the anxiety associated with uncertainty
• Connecting the family with community support services to alleviate the isolation and allow the family caregiver an opportunity for self-care
• Providing clarification and understanding of the medical literature, specifically clinical trials and treatment options to increase confidence in decision-making
• Connecting the caregiver with resources to assist with managing the financial burdens associated with a catastrophic illness

If you or someone you know is providing care for a loved one with cancer, please call for a complimentary consult to see how I can help.

703-403-7600 or email dana@cancer-champions.com

What is financial toxicity?

Financial toxicity or financial distress, as it is sometimes referred to, is a result of the financial burden of out-of pocket expenses incurred for medical care that is not covered by your health insurance.

Examples of these costs include:

Deductibles: The amount you are responsible to pay for care before your health insurance plan begins payment.

Co-insurance: The percentage of the cost you pay after your deductible has been met. Ex. Insurance policy covers 80% of cost and you are responsible for the remaining 20%.

Co-Payments: The amount you pay for each doctor’s visit or prescription.

Cancer research has made remarkable strides, yielding new, sophisticated technologies and treatments resulting in improved patient outcomes.  However, progress has not come without a cost. As costs increase, the health insurers have shifted some of the burden to patients resulting in higher deductibles and increases in coinsurance and co-payments, all of which are out-of –pocket expenses.

Despite having insurance, many of the out-of-pocket expenses of treatment are significant and people are finding themselves “underinsured”.  Several studies have described a variety of strategies patients have adopted to minimize the impact of the out -of -pocket costs of their treatment.

The research shows that the majority of “underinsured” patients altered their life styles in an attempt to afford prescription medications.    Some subjects  took  less than the prescribed amount while others didn’t fill the prescription at all.  A large percentage of the study population reduced spending on food and clothing or used their savings in order to meet out- of -pocket demands.  A smaller percentage sold property or possessions to defray the cost of their treatment.  More research is needed to determine what effect such strategies are having on quality of life and treatment outcomes.

Will you be affected by financial toxicity?   The following factors may help you determine your risk.

• The costs related to your care
• The amount of debt you currently carry
• Your assets
• If you are the primary income earner
• Your treatment’s affect on your ability to work
• The breadth of your insurance coverage
• The type of cancer you have been diagnosed with and its severity

One of the first recommendations I make is for clients to assess the assets they have.  As a private medical advocate, I have at my disposal a network of vetted professionals and resources to assist clients who are experiencing the very real side affect of financial toxicity.

One such partner is Tracy Shen of The Florin Group. www.floringroup.com

Tracy has been able to review a client’s current portfolio and identify small adjustments that, if made, would yield an increase in their cash flow blunting the impact of out- of- pocket expenses associated with their care.

In addition to consulting your financial planner, you also want to schedule a review with your insurance agent.  Depending on your diagnosis and current situation you may be eligible to access cash from an existing policy without penalty.

Additional financial support resources include but are not limited to:

• Co-Payment assistance programs, such as, Cancer Care Inc. Financial Assistance
• Cancer Support Community – coping with out-of-pocket expenses https://www.cancersupportcommunity.org/living-cancer-resources  
• Cancer Financial Assistance Coalition, https://www.cancerfac.org/
• Crowdfunding platforms such as YouCaring http://www.giveforward.com/

If you find you are suffering the very real side affect of financial toxicity due to a cancer treatment give me a call to see how I can help.    703-403-7600 or email me at mailto:dana@cancer-champions.com