What Does It Mean to Be a Mesothelioma Survivor?
Mesothelioma survival, like in most other cancers, is standardly determined by a relative five-year survival rate. This statistic reflects how many patients have survived five years following their mesothelioma diagnosis.
While there are statistics, patients and their loved ones should always follow the guidance provided by their own doctor to understand how they can improve their mesothelioma prognosis and life expectancy.
Survival rates demonstrate the percentage of patients in a treatment group who are still alive for a certain period of time following a diagnosis of mesothelioma — rendering survival different from life expectancy. Life expectancy, on the other hand, is how long an individual patient may be projected to survive.
Someone who is considered a mesothelioma survivor will have extended their survival beyond their life expectancy while undergoing treatments and surgery, taking part in innovative clinical trials, and often blending different therapies.
While the majority of mesothelioma patients do not pass the one- to two-year mark, there are survivors that have come to an incredible 10-year mark. They are living proof that it is possible to beat this cancer with effective and diligent treatment.
Mesothelioma Remission and Recurrence
There are two types of malignant (cancerous) mesothelioma remission as there are with any form of cancer: full and partial.
- Full Remission: This occurs when a patient has No Evidence of Disease (NED). NED is when all visible traces of cancer are gone from the body. Remission and NED are used instead of the term cured because doctors cannot detect any signs of cancer. However, recurrence is possible.
- Partial Remission: This occurs when the mesothelioma has reduced by 50% or more. This reduction can allow mesothelioma to be managed and treated much more easily, even if the cancer has not been fully removed. The doctor will still see the remaining cancer on CAT or PET scans.
It is important to note, however, that while a doctor may not be able to detect cancer cells with imaging studies, microscopic cancer cells may still remain in the body. There can be no full guarantee that the mesothelioma will never return.
Mesothelioma survival is directly related to the achievement of remission due to treatment. Studies across various cancer centers have found an overall median survival rate of about 4.5 years and a maximum rate of 19.5 years.
There are chances that some long-term mesothelioma survivors will experience a recurrence of the cancer after a period of apparent complete remission. Doctors do not have to securely predict if patients may experience a relapse of mesothelioma or when it could happen.
If the patient experiences mesothelioma recurrence, it is often with the same symptoms they had before. Treatment for mesothelioma recurrence, however, will often be different — particularly if the patient has already had surgery or chemotherapy during their first treatment.
An area that was previously radiated, may not tolerate being radiated again. Some recommended treatments for mesothelioma recurrence might be first-line or second-line chemotherapy drugs or an innovative biological therapy through a clinical trial.
Mesothelioma Survival Factors
There are several factors that will affect mesothelioma survival rates, such as the patient’s age or gender.
The placement, stage, and type of mesothelioma cancer, and the condition of the patient’s overall health, will also influence the rate of mesothelioma survival.
Early Detection and Disease Stage
While there is no cure for mesothelioma, early detection is an important factor in achieving remission and becoming a survivor.
Studies have demonstrated that nearly half of patients can expect a survival rate of two years and one-fifth can expect a rate of five years when the mesothelioma is diagnosed early and treated aggressively.
Early detection and diagnosis of mesothelioma mean the cancer may be diagnosed in the localized stage. The localized cancer is considered to be stage 1 of the disease and can often allow the surgical removal of a tumor.
After this stage, however, the cancer cells will have spread further, and total removal surgery is no longer possible.
Treating a smaller and limited area of cancer in stage 1 is easier and allows more treatment options and combinations of treatments, so the earlier the detection, the higher the survival rate.
Patient Health and Age
In general, older mesothelioma patients have a lower survival rate than younger patients.
More than half of patients diagnosed before the age of 50 live one year, but less than 30 percent of patients who are 75 years or older live the same amount of time.
The difference in age and survival rate is mainly due to the eligibility of younger patients for more aggressive treatments such as surgery, whereas older patients may not be able to undergo these therapies due to poor general health or a higher risk of complications.
Specialized Treatments and Disease Management
Mesothelioma patients who are in the earlier stages of their cancer may be eligible for multimodal therapy, which is a blend of surgery, chemotherapy, and radiation therapy. This has been found to have the most positive impact on mesothelioma survival rates.
Later stage patients may be able to receive such therapy as well if they have good overall health and are relatively young.
New or alternative treatments in a clinical trial could be a great opportunity for increasing the rate of survival.
Most phase I or II trials do not obtain better results than established treatments. However, with the recent revolution in targeted therapies, they may identify a drug that may go on to become a standard drug that is better than those currently approved.
Mesothelioma treatments and medications are in multiple clinical trials and these clinical trials may enable patients to take advantage of new treatments that may extend mesothelioma survival.
It is important to remember that the management of mesothelioma is of utmost importance. It includes being vigilant when it comes to new symptoms and carefully adhering to follow-up appointments with doctors and specialists.
Mesothelioma Survivor Stories
A 50-year-old female mesothelioma patient is now considered a pleural mesothelioma survivor, having passed the 10-year survival mark.
She insisted on not only two but three second opinions and chose to undergo aggressive pleurectomy/decortication surgery and continuous follow-ups with top doctors for disease management.
She does her best to maintain a healthy lifestyle and believes that the combination of the surgery, exercise, and consistent check-ins has carried her this far.
Another patient in his mid-fifties passed the 10-year survivor mark about 6 years ago — long enough to see his children grow and start families of their own. He gives credit to the aggressive extrapleural pneumonectomy surgery for his lengthy rate of survival.
He was diagnosed in his forties, and due to this early detection, responded relatively well to the treatment he received. He continues to check for symptoms and has regular check-ups with his specialist to manage any remnants of the disease that could appear.
He also maintains a healthy, active lifestyle and insists that continuing to move and travel where possible will only strengthen the battle against the disease.
There are cases of older patients surviving mesothelioma as well. A patient in his mid-60s was diagnosed with stage three inoperable malignant pleural mesothelioma in 2014, and specialists initially informed him that he would have less than a year to live.
However, he beat this prognosis due to undergoing a transarterial chemoperfusion clinical trial that delivered high-doses of chemotherapy directly to specific blood vessels that were feeding mesothelioma tumors.
This was an innovative clinical trial, and he credits his survival rate to this clinical trial and his consistent visits to the specialist.
He is hoping to make it to the 10-year mark, with another 4 years to go.
Finally, a young mother was diagnosed with peritoneal mesothelioma due to asbestos exposure in 2006. Despite being given a terminal diagnosis, she underwent a treatment called cytoreduction with HIPEC to remove the cancer from her abdominal cavity.
This treatment combines surgery with heated, intraperitoneal chemotherapy to destroy cancer cells.
As of 2020, she is still alive today and helps spread awareness about the dangers of asbestos.
How Mesothelioma Research Is Improving Survival
Though mesothelioma is a fairly rare disease, researchers and specialists are optimistic. There have been extreme and consistent advancements in traditional treatments such as surgery, chemotherapy, and radiation therapy that have improved the rate of remission and survival.
There have also been innovative and emerging treatments, such as immunotherapy and gene therapy, that have arisen from clinical trial research.
These new treatments have demonstrated increased survival rates for mesothelioma patients, and there continues to be steady mesothelioma clinical trials with promising results.
Another more recent type of treatment currently being tested on mesothelioma is immunotherapy, which aims to harness the body’s immune system to kill cancer cells.
Active research speeds up the process of discovering new treatments and therapies by using data associated with an actual gene or tumor specimens collected and stored at protected institutions. Mesothelioma centers across the country continue to study new treatments.
Researchers have access to the databases of these virtual banks to see what is available and to decide if it has the specimens required for a specific study.
The bank’s resources are available to medical academic researchers, nonprofit, and commercial organizations that are united in their common goal of discovering newer, more effective, and efficient ways to help mesothelioma patients achieve remission.
What You Can Do To Improve Mesothelioma Survival
Mesothelioma survival is dependent on many outside factors, but there are actions that patients can take to help improve their rate of survival.
Work With a Specialist
Mesothelioma specialists have the potential to significantly transform the care for individuals affected by mesothelioma — both for patients and their loved ones.
Finding a specialist or a team of specialists is one of the most important decisions a patient can make. Specialists offer skills — the ability to diagnose mesothelioma and develop personalized, unique treatment options for each individual patient. They also offer professional medical advice and manage possible side effects of treatments.
Some specialists, Like Dr. Robert Cameron and the late Dr. David Sugarbaker, created new treatments to help patients live longer.
Though mesothelioma remains rare, specialists treat many patients each year, allowing them to become familiar with the cancer, its treatment plans, and side effects of treatments.
Finally, mesothelioma specialists will have connections.
They will have knowledge about the newest, most promising treatment options for the patient and will be well connected with the clinical trial community, thereby helping their patient discover the most advanced and appropriate trial for them.
Get a Second Opinion
There are several standards that remain the same across treatment and care for mesothelioma, yet, the research and experience of every specialist will vary.
There will be several different methods preferred when treating a patient, and many different experiences and research to pull from. Having more than one mesothelioma specialist work together on the patient’s diagnosis and treatment can be beneficial and help narrow down the best possible treatment even further.
All patients have rights, and one of these rights is the opportunity to gain a second opinion regarding the diagnosis and treatment options. This just means that the patient has the ability to consult with another specialist to confirm a diagnosis or find different types of treatment options available.
It’s worth remembering that every specialist has something different to bring to the table, and with the growth and development of research come new and potentially effective different knowledge.
Seek Support and Resources
Physical treatment is as necessary as mental and emotional support. It is completely normal for patients to feel overwhelmed or frightened, and it is important for them to be with people who care about them.
Developing a strong support system is just as much of a necessity as working with a team of medical specialists. Patients will find that speaking to others in similar situations and sharing resources and knowledge will help their mental well-being and may eliminate some stress and fear.
Good mental health and a positive sense of optimism and well-being help to survive mesothelioma. Patients should look for support that fits their needs and preferences, such as counseling, mesothelioma support groups, and friends and family.
It is also important for caregivers or family members to know that mesothelioma support is also essential for their well-being.
Supporting someone with mesothelioma is stressful, and no one should go through it alone. Studies have illustrated that patients with terminal cancers — and their caretakers — who join support groups have higher long-term survival rates and increased quality of life.
Surviving With Mesothelioma
A mesothelioma diagnosis — and the prognosis that comes with it — can be stressful. Some patients may feel like they’ve lost control over their body and life. This doesn’t have to be the case.
More than ever before, there is hope for patients to survive and manage this disease. Encouraging stories of mesothelioma patients outliving their prognosis and fulfilling their dreams and goals are becoming more common.
You can take proactive steps toward the possibility of becoming a mesothelioma survivor by:
- Working with a mesothelioma specialist
- Taking care of your general health
- Being open to new treatment options
Transparency between specialists, researchers, and mesothelioma patients will ensure that everyone is kept up to speed on the disease and the actions that can be taken to help achieve remission.
Have hope and trust in your care team — and yourself — to help you retain a high quality of life and a fulfilling lifestyle on your journey to survivorship. By working with specialists, taking care of your health, and being open to new treatment options, you may be able to achieve long-term survival.
If you would like more information on improving survival rates and achieving remission please contact our team today. Our Patient Advocates are standing by to help you learn more.