A mesothelioma diagnosis affects more than just the patient, and family support is often critically beneficial when it comes to care. However, the loved ones of a mesothelioma patient may not always understand what they should know about mesothelioma in order to properly assist their family member who is fighting this illness. The following are some things that you should share with family members so that they have a better understanding of the ways that they can properly provide help during this difficult time.
It is important when discussing a mesothelioma diagnosis with loved ones that you communicate openly and honestly about the situation. You should feel safe and comfortable sharing details of the diagnosis, possible treatment, outcomes, and what help you believe that you will need in the coming weeks, months, or years when it comes to battling this illness. Family support works best when those involved are fully informed of the situation and what to expect. The converse also applies when it comes to communication, in that you should also feel comfortable telling family members what types of information you do not feel comfortable sharing or what aspects of care you do not want or expect them to assist with. This conversation needs to be transparent enough that family members understand the scope of the issue that they are about to undertake.
Anticipate an Emotional Response
When discussing your needs after a mesothelioma diagnosis, you should also anticipate an emotional response from your loved ones. These feelings often express themselves in a number of ways, including grief, anger, and denial. This may be a conversation that happens in steps with various family members as they adjust to the diagnosis and come to terms with the level of care that you may need in the future. As such, it is important that you start to have this conversation earlier rather than later, as some family members may need significant time to adjust to this new reality. Based on the severity of the response, it may also behoove you to engage in this conversation in a controlled space with a professional like a psychologist or psychiatrist that can help family members work through their feelings and get to a place where they are able to assist you in the ways that you need.
Discussing Your Diagnosis
It is important that your family members be as educated as possible about your mesothelioma diagnosis in order to fully support you in the ways that you need during your treatment and afterward. The following are all elements of the illness and medical care that you should consider sharing with your family members so that they fully understand the circumstances of a mesothelioma diagnosis.
Diagnosis and Prognosis
First and foremost, it is important for your family to know about your mesothelioma diagnosis and prognosis for care. Mesothelioma is one of the rarer cancer diagnoses, so your family may not understand what it is or how it is formed. Be sure to explain that mesothelioma is a type of cancer that occurs in the layer of tissue that surrounds most organs. It most commonly affects the lungs, abdomen, heart, and in men around the testicles, but it can also be found elsewhere. It is generally known that mesothelioma is caused by exposure to asbestos, which has been used in countless products over the years. Asbestos dust can be inhaled or swallowed, where they settle and can eventually cause this illness. However, in most cases, it can take years or decades for mesothelioma to present after initial exposure to asbestos.
Discussing the prognosis of your mesothelioma diagnosis is also incredibly important for your family members to know. Sadly, mesothelioma is often diagnosed at an advanced stage when a cure is no longer possible, while other times it may be caught early enough that treatment to cure the cancer is advisable. Generally speaking, the prognosis for life expectancy after this type of diagnosis is between 12-21 months. It is important to be clear with family members about the prognosis of your particular case so they can best assist you with what comes next. This also gives your loved ones the time that they need to come to terms with your diagnosis and how they should expect to help in the foreseeable future.
Treatment options can vary substantially for every mesothelioma case, and your family members should know what is available for you. Common treatment options for mesothelioma include surgery to remove affected cells, chemotherapy treatment, and radiation therapy to try and eradicate the cancerous cells. Targeted therapies and immunotherapy are other options that may be used to treat mesothelioma. If your diagnosis is too advanced for options that try to cure the illness, then treatment options will likely include medication and therapies that are meant to make you as comfortable as possible while the mesothelioma progresses. Sometimes, it can be helpful for a patient to explain all the various options to their family members in order to gain insight and advice. In other situations, a patient may have already made up their mind about a particular course of treatment, but it is still helpful to explain all the options to your family members and why you are choosing to take a specific path in your medical care.
Goals for Treatment
Family members are also better able to assist you when it is clear what the goals for treatment are in your mesothelioma diagnosis. This can be a particularly difficult topic if the prognosis is that cancer has spread too far to eradicate successfully, but it is a critically important conversation to have. If the goal for treatment is to eliminate mesothelioma cancer, family members will prepare to assist in ways vastly different than if the goal for treatment is palliative care. The range of assistance and tasks expected of them will vary significantly and relaying your expectations of the goals of treatment can help them align theirs accordingly. Depending on your intended goals for treatment, your family may also seek additional care for their own emotional wellbeing and help you with other important decisions like end-of-life care.
Potential Side Effects
You should also have an open and transparent conversation with your family members about what to expect as potential side effects of your chosen course or options for treatment. Signs and symptoms of mesothelioma can include chest pain, coughing, shortness of breath, unusual lumps of tissue, unexplained weight loss, abdominal pain and swelling, and nausea that can continue and worsen over time if a patient chooses to not seek treatment for their cancer.
Side effects of surgery can be a lengthened recovery period as well as permanent effects of certain surgeries like the removal of a lung. Chemotherapy and radiation therapy have their own set of side effects, as well. Common side effects of chemotherapy include fatigue, hair loss, bruising easily, infections, anemia, nausea and vomiting, and appetite changes whereas radiation therapy can cause much of the same in addition to hearing loss, scalp and skin changes, and trouble with memory or speech. For mesothelioma patients that secure treatment with immunotherapy, side effects may include flu-like symptoms such as fever, chills, weakness, dizziness, muscle and joint aches, fatigue, and headache. In many cases, family members are assisting with caring for the side effects of mesothelioma treatment more than they are with cancer itself. This is why it is critical that you are open and honest with loved ones about what to expect during and after specific treatments for this illness.
In addition to the physical side of mesothelioma, it is also important to address the emotional concerns that you may have with your family members. Emotional and psychological struggles are common following a diagnosis of mesothelioma which may require additional attention and care. Depression, anxiety, and insomnia are commonly reported issues, and if left untreated they can manifest themselves physically or cause a rift between you and your loved ones. Family members may be able to assist you in finding the emotional or psychological help that you need in support groups, individual therapy, group therapy, or other resources in addition to getting you to and from this care if you need assistance in this way.
You should also take this time to address any legal concerns that you may have as a treatment for your mesothelioma progresses. It may behoove you and your family to establish a power of attorney for all legal and financial decisions as well as a healthcare power of attorney (sometimes known as a healthcare proxy) who will make the medical decisions in situations where you are unable to communicate those decisions on your own due to the progress of the illness or the side effects of treatment. You may need to appoint or ask family members to volunteer to serve in these capacities and others that affect your legal affairs.
Two other areas of legal concern that you should speak to your family about are the creation or amendment of an estate plan and whether you wish for assistance in seeking legal compensation for your mesothelioma diagnosis. An estate plan dictates how you wish for your estate assets to be divided amongst your family after your passing and generally includes a final will and testament as well as possibly the establishment of a living trust. Part of this estate plan should include the appointment of an executor or administrator, which a family member may be able to assist with. Family members can also help with contacting an experienced asbestos attorney if you are interested in seeking legal compensation for your mesothelioma illness. Should the illness prove fatal, your family may also be able to seek additional compensation through a wrongful death claim. These conversations are a good time to discuss these options and share your preference for the level of care that you hope your family can assist with on these matters.
Lastly, you should address any financial or insurance concerns that you have about the cost of your mesothelioma treatment. Mesothelioma patients routinely cite financial and insurance issues as their top concerns when undergoing treatment and other care. Your family may be able to assist with contacting your insurance provider, Medicare/Medicaid, or the VA to determine the extent of your healthcare coverage. In addition, family members can assist with other financial issues, such as contacting financial lenders who hold existing loans like a mortgage or credit card debt to see whether they would be willing to adjust the terms of those loans to accommodate your recent diagnosis. Sharing your concerns about financial issues related to your mesothelioma diagnosis with your family may also help illuminate other solutions to the issues that you may not have considered and let your family know where you stand if certain financial matters arise during your treatment or related care.
Explaining What Assistance You Need
Once you have fully explained your mesothelioma diagnosis, prognosis, treatment options, goals, side effects, emotional concerns, and financial concerns it is critical that you provide your family with specific next steps on how they can help. This may take a couple of different forms depending on your particular circumstances. It may include identifying a couple of specific family members to assist with specific tasks, such as helping with transportation to and from treatment or volunteering to serve as a financial or healthcare power of attorney. This part of the conversation could also be more general, where you explain what specific types of assistance you will need before seeing which family members have the willingness and capacity to provide that type of help.
Explaining what assistance you need is also helpful because it could identify elements of care that your loved ones are unable to assist you with during and after treatment, which may spur beneficial future conversations about your care and options with your medical team and others involved in your mesothelioma diagnosis. Financial planners, insurance providers, healthcare professionals, and others may be able to provide resources or options to help fill the gaps where family members are unable to assist.
Talking to the Medical Team
It may also be beneficial after having the initial conversation with family members about how best they can assist you to also have a family meeting with the medical team. Mesothelioma specialists and others involved in your care may be able to fill any gaps in the information provided about your diagnosis and identify other areas where family assistance may be required during the course of your treatment. This also provides family members another opportunity to educate themselves about the situation and address any lingering concerns that they may have with trained professionals who specialize in this type of care. Talking to the medical team may also help put your loved ones more at ease if they have an opportunity to meet the people who will be taking care of you during this difficult time.
Seeking Additional Information and Support
If your family is in need of additional information or support, there are many other resources available for their needs. Support groups are one option for family members. These can be in person or online in format, with some being structured very formally while others are more informal in nature. Support groups bring together people in similar situations, including groups for the spouse, children, and immediate family members of someone who has been diagnosed with mesothelioma. Support groups are a wonderful source of additional information, educational sources, recommendations, and more. They can also be a safe space for family members to share their feelings, concerns, and fears with others who know exactly what they are going through.
Another option for additional information and support is through family counseling services. Typically, this is facilitated by a licensed psychologist or psychiatrist where the family meets to discuss their issues once per week or more. This is a therapeutic space for family members to talk through what they are experiencing and have licensed professionals offer suggestions or solutions. Family counseling may also happen in conjunction with individual counseling for family members that are struggling with your mesothelioma. Individual counseling is also done with a licensed professional, such as a social worker, psychologist, or psychiatrist, and allows a family member to share their thoughts and feelings privately with someone who is trained in knowing how to help them navigate a complex web of emotions and issues.