Finding Reliable Online Information About Mesothelioma

Dana Nolan, MS LMHCLicensed Mental Health Counselor

Sourcing Information the Old-Fashioned Way

Prior to the Web, patients and caregivers relied on finding information about mesothelioma from: Their oncologist and/or treatment center Library (medical journals and reference books) Bookstore Calling organizations, such as the American Cancer Society

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Benefits of Using Online Mesothelioma Resources

Accessible 24/7 from your home Multilingual information available if

English is not your first language Connect with other mesothelioma patients

and learn about their experiences Search for clinical trials and the latest

information about your disease and treatment

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Online Sources Are Not Always Right

Anyone with a computer can set up a website. People and companies can create official-looking websites in order to promote a health care product or the opinions of the site’s creator.

Anyone can publish information on a blog, wiki, medical or social networking sites.

There is no regulation of information published online.

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Proceed with Caution

Despite unreliable or invalid online content about your cancer, the Web remains a great starting point for updated information about mesothelioma.

Remember: Be smart about where you search, who’s telling you what and check their sources.

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Tips for Evaluating a Website

Check the domain extension of a website’s URL (address) for a general indication of the type of organization sponsoring the site: • .edu: University or learning institution • .gov: Government agency • .com: Commercial company • .org: Nonprofit organization Keep in mind that many commercial companies provide valuable and truthful

information based on information from these types of organizations.

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Tips (cont.)

Read the “About Us” or “Who We Are” section of a website to learn about the credentials and intentions of its creators.

The absence of credentials or a mission statement on a website offering medical or health advice or selling health-related products should be a red flag.

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Online Cancer Fraud

When facing a mesothelioma diagnosis, it may be tempting to jump at anything that appears like a chance of a cure.

Some companies falsely market bogus tonics, pills and creams as beneficial natural treatments and dietary supplements.

The FDA must approve all pharmaceuticals and medical devices intended to treat cancer before they are marketed.

Some companies have used the Web to illegally bypass this process.

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Signs of Online Cancer Fraud

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The FDA published the following phrases originally found on some fraudulent websites: “Treats all forms of cancer” “Skin cancers disappear” “Shrinks malignant tumors” “Non-toxic” “Doesn’t make you sick” “Avoid painful surgery, chemotherapy and radiation

therapy” “Limited for a short period of time”

SOURCE: U.S. Food and Drug Administration (2008) www.fda.gov/consumer/updates/cancerfraud061708.html

Evaluating Online Resources

Chat rooms and bulletin boards can be valuable to share your story and read others’ mesothelioma stories, but remember what you read may be based on one person’s experience and not objective facts or medical research.

Check the date that website was revised. You want to look for sites offering regularly updated content.

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Evaluating Online Resources (cont.)

Does the online content contradict information from your physician?

Share online information with your doctor. Even if you find good, reliable information on the Web, your physician will be able to determine if that information applies to you.

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Conclusions

Mesothelioma patients and their loved ones often use the Web as a resource to learn about their disease and treatment options.

Sadly, there is plenty of unreliable or misleading online information.

Using the tips we discussed in this presentation, you are better prepared to find credible online information about mesothelioma.

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Questions and Answers from Support Group

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Question 1

How Does Chemotherapy Affect the Nerves?

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Answer• Certain chemo drugs affect nerves differently than

other drugs. Although chemo is often spread throughout the body, symptoms typically start from bottom to top. In most cases, people will notice chemo-induced peripheral neuropathy (CIPN) symptoms in the feet, then later in the hands.

• Some chemo drugs can cause nerve damage resulting in tingling, burning, weakness or numbness in hands, feet or both; headaches, loss of balance, difficulty hearing, vision problems, shaking, trembling or sore, achy muscles.

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Is an Itchy Sensation or Weakness in the Legs Common with this Diagnosis?

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Question 2

• As every person is unique, so is each diagnosis. This means cancer may affect you differently than someone else, and you may experience different symptoms or side effects.

• An itchy sensation is not one of the most common side effects, but some people do experience it. Weakness in the legs, specifically, also is not one of the most common side effects; however, many different factors, including chemo, can cause this or sometimes even back pain can lead to leg pain or weakness.

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Answer

What Is the Cause of My Chest Pain?

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Question 3

• Chest pain is typically caused by shortness of breath — a common symptom of this type of cancer.

• It also can be caused by fluid buildup in the lungs, enlarged lymph nodes or metastasis on the ribs, chest wall and pleura (lining around the lungs).

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Answer

Is There a Risk Associated with Draining Fluid Buildup at Home?

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Question 4

• Although having the ability to remove fluid buildup to manage pain at home is convenient, there are risks involved with using a draining system on your own. This includes a risk for infection, hypotension and circulatory collapse.

• Also, a doctor may decide it is not the right decision for you, because of other factors. Sometimes fluid buildup does not always occur in the same spot. If this is the case, having a drainage tube in one spot may not be beneficial.

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Answer

What Is a Pain Patch?

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Question 5

• A pain patch is typically a strong prescription pain medication for moderate to severe chronic pain. It delivers pain medication slowly and continuously through the skin and into the body without the ebb and flow associated with other drugs.

• Each patch can relieve pain for up to three days. Most consist of potent opioid substances, such as fentanyl, methadone, hydromorphone, morphine and oxycodone. It may be inappropriate or dangerous for a patient who previously has not received opioids for pain management. Consult your doctor first.

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Answer

What Does “Stable Cancer” Mean?

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Question 6

• Stable cancer does not mean “cancer free,” but it does mean that blood test results are within an acceptable range, and the cancer is not shrinking, growing or spreading.

• It also indicates that no new tumors are forming.

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Answer

Is There a Diet to Help Control the Acidity or Alkalinity of My Body Fluids?

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Question 7

• As of right now, there is not enough evidence to support such a diet.

• Often, one of the best diet plans to follow is that of a diabetic, because most cancers feed off sugar.

• Stay away from processed foods and others high in sugar.

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Answer

Contact Information

1-800-615-2270

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