Understanding Radiation&

Self-Advocacy

What is radiation and where does it come from?

Simply stated, radiation is energy moving through space. Ionizing or high energy radiation is around us all the time. It comes from different sources.

1. Natural radiation that is in the background of our every day lives. The sun!

2. Medical radiation that includes x-rays, CT scans, and some other radiographic procedures.

3. Gamma rays (decaying atomic energy with higher penetration), microwaves, radio waves.

How do x-rays increase cancer risk?When any ionizing radiation passes through the body, positive ions (aka

free radicals) are left behind. These can damage the DNA, or the radiation can directly damage the DNA.

If the DNA is damaged, three things could happen;

1. The cell repairs itself. Most common result.

2. The cell dies. Only occurs with very high doses of radiation.

3. The cell repairs itself with errors/mistakes. A rare occurrence.

Activity Approximate

Radiation DoseTypical activities of daily living 3.1-6.2 mSv/Year

Typical activities of daily

living;

0-1000 ft above sea level

0.28 mSv/year

Typical activities of daily

living;

5-6,000 ft above sea level

0.52 mSv/year

7-hour plane ride 0.02-0.035 mSv1-2 hour plane ride 0.005mSv

Procedure Approximate Effective

Radiation Dose

Comparable to natural background

radiation for

Dental Cone Beam CT 0.18-.2 mSv 4-24 days

Panorex XR of Jaw 0.014 mSv ~10 days

Dental X-ray 0.005mSv 1 day

Millimeter Wave Technology Scanners;These use non-ionizing radio waves to scan the body. These are in the form of low level radio waves. No ionizing radiation is used.

Airport Security

Metal Detectors

These do not put out radiation of any type.

Airport Security

Airport Security

Backscatter ScannersThese scanners use ionizing radiationtechnology that reflects from the personbeing scanned. They are also called “Naked Body“ scanners!

Baggage scanners

These are x-ray machines producing

ionizing radiation. They have thick walls

and lead curtains which prevent this

radiation from escaping.

Airport Security

For comparison it would take;

http://www.xrayrisk.com/faq.php

More Exposure Information

80 airport security scans to equal 1 day of natural background radiation

200 airport security scans to equal the radiation from a 7 hour flight

1000 airport security scans to equal one chest x-ray

Research studies fail to prove a consistent link between cell phone use and brain cancer. Cell phones emit radiofrequency energy which is a form of non-ionizing radiation, unlike ionizing radiation used in x-rays and CT scans. The largest study to date of long term cell phone use (Interphone study) found that cell phone use actually reduced the risk for brain tumors. In a small portion of the study, participants with brain tumors reported that they spent longer time on their phone, but other studies that reviewed phone records showed no difference. Most of the media coverage has been due to the International Agency for Research on Cancer (IARC) recent classification of radiofrequency energy as "possibly carcinogenic". Despite exponential growth in cell phone use over the past 30 years, there has been little change in the risk of brain tumors. (http://www.cancer.gov/cancertopics/factsheet/Risk/cellphones)

Cell Phone Use

Why is this important

to us?

Exposure to ionizing radiation can increase the risk of individuals with Gorlin Syndrome of developing BCC’s.

We need to understand that frequent air travel, and living at high elevations are also risk factors as the radiation exposure is higher.

We need to educate the medical professionals who care for us that radiation exposure is a risk factor for developing BCC’s.

We need to work as a team with our physicians, advocating for ourselves and our loved ones.

How much is too much?

• At this time, we simply do not know the answer to this question.

• The answer, most likely depends on the individual, their unique genetic defect, and many other factors.

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The risk associated with medical imaging procedures refers to possible long-term or short-term side effects. Most imaging procedures have a relatively low risk. Hospitals and imaging centers apply the principles of ALARA (As Low As Reasonably Achievable). This means they make every effort to decrease radiation risk. It is important to remember that a person is at risk if the doctor cannot accurately diagnose an illness or injury. Therefore, it could be said that the benefit from medical imaging, which is an accurate diagnosis, is greater than the small risk that comes with using it. Talk to your doctor or radiologist about any concerns you may have about the risks of a procedure.

https://www.radiologyinfo.org/en/pdf/safety-xray.pdf

Regardless of radiation exposure, the average overall lifetime risk of developing an invasive cancer is 37.5% for women and

44.9% for men.This is for all people, not just those of us with GS.

Benefit vs. Risk

Do not let sleeping dogs lie. Talk to your doctor, your medical team.

Explain that you or your loved one has GS.Explain that with this there is an increased risk of developing BCC’s from extensive exposure

to ionizing radiation.

Discuss if there are other options available such as an MRI or ultrasound.

Ask if the x-ray or study is necessary at this time.

Be an active participant in the decision making process.

Ask for a lead shield to cover as much of the unaffected area as possible.

Information Sources

http://www.xrayrisk.com/faq.php

http://www.ans.org/pi/resources/dosechart/msv.php

https://www.acr.org/Clinical-Resources/Radiology-Safety

/Radiation-Safety

https://www.acr.org/-/media/ACR/Files/Appropriateness-Criteria/RadiationDoseAssessmentIntro.pdf

https://www.radiologyinfo.org/en/pdf/safety-xray.pdf