Mesothelioma is an asbestos-related cancer that is highly aggressive. Despite the low survival rates, there are survivors. Some of these have beaten the odds and outlived their life-expectancy by several years.
Mesothelioma is a rare, highly-aggressive cancer which is life-threatening. Diagnosis of mesothelioma can be devastating and many people are told they may only have a few months to live. Despite low survival rates, many patients have outlived their life-expectancy, some by as much as 17 years.
Mesothelioma patients and loved ones should take heart in knowing that prognosis, life-expectancy and survival statistics are only estimates. Each patient is unique and may not fit the “typical” pattern. There are some things that patients can do to increase their chances of becoming a mesothelioma survivor.
Mesothelioma is a very rare type of cancer with only 3,000 new cases emerging each year. It has a long latency time with 20 to 50 years passing between the time of exposure and the time of diagnosis and the symptoms may appear similar to other medical conditions or types of cancer. Getting a second opinion will help ensure that the diagnosis, staging and prognosis are accurate so that treatment can begin as soon as possible.
Within that small group of 3,000 new cases, there are four major types of mesothelioma at different locations in the body where tumors may develop and three different cell types – making each case, unique. Most physicians, even oncologists and surgeons, do not have experience in treating this rare, aggressive disease. Seeking a second opinion or treatment from a mesothelioma specialist can help to ensure that all appropriate treatment options are considered.
Cancer is a devastating diagnosis and a mesothelioma diagnosis may be one of the worst. Dealing with emotions in a straightforward cancer can help a patient move beyond the shock and fear and allow them to move on to quick action. Even though the news is not good, maintaining a positive outlook may provide the ability to manage and cope with treatment. This may increase the odds of becoming a mesothelioma survivor.
Many mesothelioma survivors were able and willing to undergo aggressive treatment which helped them beat the odds. For the two most common types of mesothelioma, aggressive surgery, combined with traditional treatments such as radiotherapy or chemotherapy can have a dramatic impact on life expectancy. Aggressive surgical procedures are highly invasive but in some cases may increase the survival rate it by doubling or tripling it and some mesothelioma survivors live much longer.
Just 20 years ago, the average mesothelioma patient was given only 4 to 6 months to live. There were no “standard” mesothelioma treatments then, but even though it is one of the rarest forms of cancer, researchers have made a lot of progress towards treating the disease. Today’s standard treatments of surgery, chemotherapy, and radiation have been successful at extending life-expectancy by four-fold. Newer treatments are also in development which may offer additional hope and increase the chance of becoming a mesothelioma survivor. Many of these treatments are available as part of investigational studies or clinical trials, often conducted by mesothelioma specialists.
Paul Kraus – Paul is the longest-living mesothelioma survivor. He worked cutting sheets of asbestos and nearly 40 years later, was diagnosed with advanced peritoneal mesothelioma. At the age of 53, he was given 6 months to live. In his book, Surviving Mesothelioma and Other Cancers: A Patient’s Guide, Paul tells of how he changed his life, Paul explains he became a mesothelioma survivor by refusing to accept his prognosis and changing his lifestyle. In 197, under the supervision of his doctor, Paul took a holistic approach with dietary modifications and herbal treatments. Though it would still be considered unconventional treatment, Paul is a 17-year mesothelioma survivor.
Alexis Kidd – Alexis was diagnosed with peritoneal mesothelioma at the age of 37. Abdominal pain drove her to seek evaluation and when she was diagnosed, her cancer was only the size of a grain of rice. Even though it was early, she was told she had between six and 24 months to live. Her oncologists did not know how to treat mesothelioma and she sought treatment a peritoneal mesothelioma specialist. He worked with Alexis’ own doctor to aggressively treat her mesothelioma with cytoreductive surgery and heated intra-peritoneal chemotherapy (HIPEC), the most aggressive treatment available. This, combined with traditional chemotherapy, allowed Alexis to live for over eight years, far beyond her prognosis.
James “Rhio” O’Connor – Rhio was diagnosed with pleural mesothelioma at the age of 61. He believes his exposure to asbestos occurred when he was a child. In Rhio’s book, They Said Months. I Chose Years!, A Mesothelioma Survivor’s Story, he tells of how surgery was not an option and with only a 12-month life expectancy, chemotherapy was not going to increase his odds. In 2001, those were the only choices so he chose not to have treatment. His oncologist recommended that he take a vacation with his wife and begin hospice care when he got back. Rhio didn’t do that. What he did, was work with a number of clinicians to change his diet, begin meditation and formulate a regimen of over 100 supplements. This non-traditional approach against serious odds was successful and Rhio became a 7-year mesothelioma survivor.
Jan Egerton – In 2004, while in her mid-40s, Jan was diagnosed with pleural mesothelioma and given an estimated one year to live. In her blog “Jan’s Journey”, she shared her experiences with mesothelioma, writing about her symptoms that had probably started years before, her treatment regimen and how the disease had affected her life. Jan chose to take an aggressive approach to treatment, getting multiple rounds of surgery, cryoablation, chemotherapy, and radiation. This aggressive treatment regimen, along with a willingness to become a mesothelioma advocate which helped to keep her active and in a positive state, Jan became a 10-year mesothelioma survivor.
Heather Von St. James – Heather believes her mesothelioma came from secondary exposure to asbestos, unknowingly transported into her childhood home by her construction-worker father, whose work jacket would be covered in drywall dust. Thirty years later, in 2005, she was diagnosed with pleural mesothelioma, just 3 months after the birth of her child. Her doctors told her that without treatment, she wouldn’t live beyond 15 months. Her doctor said that chemo and radiation might extend her life to five years but an experimental treatment may give her up to 10 years to spend with her daughter. Heather took that option and within weeks she was undergoing an aggressive treatment regimen which ultimately included an extensive, investigational surgery, extrapleural pneumonectomy (EPP) along with other advanced treatments including intra-operative heated chemotherapy and Intensity Modulated Radiotherapy (IMRT. Nearly 11 years after her diagnosis, Heather is still raising her daughter and writing her blog which is published in the Huffington Post.
When someone survives something that “should have killed them”, they may feel a sense of guilt – simply for being alive. This can happen with traumatic events such as soldiers who return from battle when others died but it can happen with cancer survivors who outlive their diagnosis as well.
Mesothelioma survivor’s guilt is a challenge, particularly when the patient has been in touch with other mesothelioma patients who don’t survive. The survivor feels guilty because they did. They may wonder “why me?” and feel bad for feeling good. They may fear that they won’t be as “good” as they should be.
It is important for mesothelioma survivors who experience guilt to seek help if they need it and recognize that they don’t have to do it all alone. Mesothelioma survivors have coped with survivors guilt through a number of avenues such as journalism, support groups, and counseling.