How did you get involved in advocacy? Tell us your mission and how it's changed both you and your community.

After I had finished my treatments and was cured of my breast cancer, I had a strong desire to give back. I was grateful for my survival and had learned so much that I wanted to somehow make another person’s journey easier. I decided to create Breast Investigators. Breast Investigatorsis a website filled with tools and information women and men can use to make informed decisions about their breast health. It is a breast cancer network where members share information on all aspects of the disease such as prevention, early detection, treatment, survivorship and advocacy of breast cancer. Viewers can learn and connect with others, sign up for monthly breast self awareness reminders, and share their own information and experiences. The website is very user friendly, nothing intimidating, just an easy to use site designed to help us face the challenge of breast cancer.

The interesting thing that came of my creation of this website is all that I have learned and continue to learn about the amazing people, organizations, and resources that are available to us. My wish is that Breast Investigators servest as a tool to help others find those resources.

I worked at a former uranium production facility during the cleanup and environmental restoration phase. I was diagnosed with Stage IIIB breast cancer three months after I was laid off. I've read scientific studies clearly indicating the amount of radioactivity I was exposed to during the course of my work was more than enough to cause my cancer. Like thousands of other former Cold War Warriors, my claims for compensation have been repeatedly denied. I have started a petition to ask the President and Congress to revise the law that was supposed to compensate us, but really does nothing:

http://www.change.org/petitions/president-obama-and-both-houses-of-congress-compensate-the-cold-war-warriors-and-cleanup-workers

When I was diagnosed with breast cancer in 1991,there was no Internet,no information,but I learned of the first political group for breast cancer: National Breast Cancer Coalition, I wanted to be part and I was able to be very active as Captain of my State,there was a lot of work to be done, "Y Me" a fantastic group, was one of the first to join,others they "did not want to get involved politically".We worked very hard with Fran Visco and many others that have passed away.
We changed the way breast cancer was looked at. I still represent as an advocate and activist to unserserved patients, this is a volunteer job.
Also I became a volunteer at MDACC to get to learn about cancer,my degrees are in diferent fields, but I ended going back to University to have a career in the medical field.
I recommend to go to NBCC site and see all what we have been able to do.
Of course many jumped on board once they saw how sucefull we had been.

This is my story:

My husband (a member of local 589) is a survivor of Head and Neck cancer (not a particularly well known form of cancer). He was diagnosed and treated 2yrs ago. After numerous serious complications and hospitalizations, he survived! However he has developed serious side effects brought on by the radiation and chemotherapy. Many of these side effects are such as his diminished swallowing capacity, severe dry mouth, atrophy of the jaw, to name a few, are permanent. He has also developed a serious health condition known as ONJ (Osteonecrosis of the Jaw, aka “Dead Jaw”) as well as many decayed teeth that need to be extracted – prior to his diagnosis and treatment, he had excellent oral health.

Our insurance, Blue Cross and Blue Shield, has been great throughout his treatment and recovery, UNTIL now. They have refused to pay for a medically necessary oral surgical procedure on the basis that it is dental. I beg to differ, although this procedure is an oral one, the cause is directly related to his treatment for the cancer. He would NOT need all or most of his teeth removed (especially at 47 years of age) if it were not for the cancer treatment. Even if we were lucky enough to have dental insurance, most policies have annual maximum benefit of about $1,000 AND the purpose of them is for preventive treatments NOT reconstructive or restorative purposes. The follow up procedures needed by head and cancer survivors are medically necessary, NOT cosmetic as in the case of other cancers, such as breast cancer. In those instances everything is covered, wigs, prosthesis, reconstruction, and so on. Don’t get me wrong, my sister is currently battling breast cancer; I have nothing against any other form of cancer (cancer is cancer and it all S$&KS!), but I do believe the insurance industry as a whole, has something against people who suffer from Head and Neck cancer. (During all of my research I have found that this is commonly a problem for ALL survivors of this type of cancer, no matter what insurance they have; for example survivors on Medicare, Mass Health or other private insurances also face the same “discrimination”.)

I am trying raise awareness on behalf of survivors of Head and Neck Cancer (and it’s not financial). I started two online petitions (http://suz46.epetitions.net/) or (https://www.change.org/petitions/the-president-of-the-united-states-cover-head-and-neck-cancer-survivors-for-medically-necessary-procedures) and a facebook page (http://www.facebook.com/pages/Seriously-Head-and-Neck-Cancer-isnt-really-Cancer/368201309871150) to draw attention to the need for reform in our private insurance industry. In a nut shell: Survivors of this awful disease need post-treatment and reconstructive procedures, just like survivors of other forms of cancer. However because it is generally in the oral cavity health insurance defers payment to dental. But these oral complications are directly due to the treatment they receive in fighting the cancer and if left untreated can cause serious HEALTH complications.

The likelihood is high that aggressive cancer treatment for Head and Neck cancer, will have toxic effects on normal cells as well as cancer cells. The gastrointestinal tract, including the mouth, is particularly prone to damage. This is true whether the treatment is radiation or chemotherapy. Most patients being treated for head and neck cancer will experience some oral complications, and while most of these are manageable, complications can sometimes become severe enough that treatment must be completely stopped. In addition, surgical solutions to tumor removal may lead to oral and nutritional problems as well.

The most common oral problems occurring after radiation and chemotherapy are mucositis (an inflammation of the mucous membranes in the mouth), infection, pain, and bleeding. Other possible complications might include dehydration and malnutrition, commonly brought on by difficulties in swallowing (dysphagia). Radiation therapy to the head and neck may injure the glands that produce saliva (xerostomia), or damage the muscles and joints of the jaw and neck (trismus). These treatments may also cause hypovascularization (reduction in blood vessels and blood supply) of the bones of the maxilla or mandible (the bones of the mouth). In addition, treatments may affect other forms of dental disease (caries, or soft tissue complications), or even cause bone death (osteonecrosis).

I am only one person hoping to make a permanent change for all survivors of Head and Neck cancer. These policies HAVE to be changed to include this growing group of survivors! Why are COSMETIC procedures and devices covered for some cancers, but MEDICALLY necessary procedures are not covered for others? We NEED reform yesterday!

Thank you for sharing your story, suz46!