One of the biggest mistakes you can make right after learning you’ve got mesothelioma is to allow yourself and your loved ones to panic.
According to one mesothelioma expert, you’re apt to choose less-effective mesothelioma treatments and survival strategies if you decide these things while in the grip of fear.
Mary Hesdorffer, M.S., N.P., executive director of the Meso Foundation, suggested recently that many new mesothelioma patients react to their diagnosis by rushing headlong into surgery.
For them, a better approach might be to try one of the other treatment options first, she said.
“You have this diagnosis of cancer and your first thought is, ‘Oh my God, I have cancer, cut it out,’” said Hesdorffer, speaking earlier this year at the International Symposium on Malignant Mesothelioma.
You never want to make a decision while in such a highly emotional state, said Hesdorffer.
Instead, calm yourself. Then calm your family. Then start gathering information about mesothelioma and talk to medical professionals specialized in mesothelioma treatment, she recommended.
After all that, you will be in a much stronger position to make up your mind about mesothelioma care, she said.
What Mesothelioma Patients Need
Hesdorffer’s talk was titled “The Unmet Needs of the Mesothelioma Patient and Family.” In it, she described what you’re going to require after receiving the bad news that you have mesothelioma.
She offered that mesothelioma patient needs include:
- Easy access to accurate, comprehensive credible sources of information
- Easy access to medical coverage
- Help with travel to treatment centers
- More support with crucial decision-making
- Scientific information expressed in easier-to-understand terms
- Ability to compare physicians, treatments, side-effects and outcomes
- Support from friends and professionals
- Better understanding of the economic and legal interests surrounding mesothelioma
- Access to effective treatments
Hesdorffer said that part of what throws new mesothelioma patients and their families into a panic is getting diagnosed by a medical professional who isn’t specialized in mesothelioma.
The reason is that the nonspecialist’s diagnosis usually comes with a distorted prognosis.
Hesdorffer said these mesothelioma nonspecialists understand mesothelioma only from textbooks and other scientific literature, not from practical experience.
Consequently, they are prone to telling you that you can expect to live for only a few months more.
The reality, she insisted, is that by making wise and not panicky decisions about mesothelioma treatment, you can position yourself for a good shot at living with the disease for quite a long time.
After You Get a Mesothelioma Diagnosis
Hesdorffer suggested that — as soon as possible after being diagnosed by your regular doctor — you should search out and find a mesothelioma specialist to whom you can entrust your care.
However, expect to do some traveling in order to be seen. Mesothelioma specialists are few and far between, Hesdorffer cautioned.
“There a number of factors that come into trying to figure out where you have to travel — and even whether you can travel”, she said.
For example, you have to decide how you will get there and who will travel with you.
Hesdorffer also recommended you show up at the chosen mesothelioma clinic feeling relaxed, not anxious.
She explained that you’ll better absorb and remember all that the doctor tells you if you’re relaxed.
Inner peace may be hard to achieve, though. Hesdorffer said new mesothelioma patients are especially vulnerable to feelings of demoralization and depression right after diagnosis.
“It’s okay to say that this diagnosis has overwhelmed you,” she assured.
Hesdorffer cautioned that mesothelioma patients who have never been sick before often discover their coping skills are not up to snuff, but added that coping skills will be essential.
Mesothelioma is going to turn your entire life upside down, she said. Count on it.
Social workers, she emphasized, can be good allies in your mesothelioma fight. One thing they do very well is help patients navigate the health care system in order to access the mesothelioma care required.
International Symposium on Malignant Mesothelioma
The International Symposium on Malignant Mesothelioma is a gathering consisting largely of scientific sessions and lay discussions.
This conference is geared to medical professionals, but also to mesothelioma advocates, mesothelioma survivors and families.
The Meso Foundation — formerly the Mesothelioma Applied Research Foundation — sponsors the annual event.
The Meso Foundation is a nonprofit organization that funds research and advocates for stronger federal support of efforts to find a mesothelioma cure.
In 2015, the symposium takes place March 2-4 at the National Institutes of Health and the Hyatt Regency Bethesda in Bethesda, Maryland.