Participate in a Breast Cancer Treatment Study

I have always been one to participate in clinical trials, except for the time I had a colonoscopy and was asked to participate in a study involving the diameter and flexibility of the scope that would be snaked through my colon. The gastroenterologist told me that neither he nor I would know which of three scopes he would use until he opened the package and by that time I would be in a "twilight sleep". He said that it might be an adult size scope that is larger-in-diameter and stiffer than the other two or it could be an adult size that’s larger in diameter, but more flexible or it may be a child size scope that’s the smallest in diameter and the most flexible. That time I opted out of the study and went for the smallest, most flexible scope. But that’s a different story.

This time, I was given the opportunity to participate in a RayGel study during my breast cancer radiation treatments. RayGel is a formulation of reduced glutathione and anthocyanins extracts from various blue/purple flowers and it protects the skin against burning, which is one of the possible side-effects of breast radiation.

I was given several small tubes of the gel and was instructed to apply it one hour prior to my radiation treatment and again four hours later and to mark the application times on a chart. The physician in charge of the study told me that I wouldn’t know until after the study was completed whether I was given Ray-gel or a placebo.

Each pea-sized amount of gel covered four inches of skin, and it took only four peas to adequately cover my treatment area. I wondered if women with larger breasts were given more tubes of gel.

As it turned out I cheated a little and only applied the RayGel once a day, prior to my treatment and aloe vera gel just before bedtime. It really wasn't convenient for me to apply the RayGel in the afternoons because I always seemed to be away from home in a public place during the time I was supposed to apply it. I needed to look in a mirror while applying the purple stuff to make sure I hit the target and I didn't feel comfortable exposing my nippleless breast in a public restroom. I was told to continue applying it once a day, to see if the gel (or placebo) would still be effective when applied less frequently (sort of a study within a study).

At the end of my radiation treatments, the skin on my right breast looked exactly the same as the left. There was one little area behind my right armpit where I didn’t apply the gel because I didn’t know that the x-ray beam was targeting that area too. Well, that was the only area that was burned and rough-feeling, so I know that I received the real thing.

Click here to find out more about the RayGel clinical trial. If there are no clinical trials in your area, you can purchase it online—although it’s not cheap.

By-the-way, my aunt Ginny is currently undergoing treatment for breast cancer and her left breast is bright red from radiation burns. I gave her some leftover RayGel tubes, but she was reluctant to try it until she consulted with her doctor.

My advice is, if you have access to RayGel, use it because it does work. Why suffer painful burning if you don’t have to, not to mention the fact that radiation itself can cause skin cancer if it burns your skin (the radiologist in charge of the study said).

Join the Race for the Cure

Last year at this time I signed up for the 5k walk in the Susan Komen Foundation Race for the Cure. I had recently undergone two surgeries. The first to remove the lump and the second to remove more tissue, including my nipple and areola, in order to get a clear margin. I was healing fast and didn't have any pain or complications from the surgery and I was ready to get some exercise, especially since it would be for such a good cause.

My sisters and a couple of friends met me at a breast cancer awareness seminar at the Rose Garden arena a couple of weeks before the Race to register for the event. At first I was hesitant to enter the race as a survivor because it meant wearing a pink tee-shirt instead of white and I didn't want to be labeled. If others happened to see me wearing a pink tee-shirt at the televised event, my secret would be out. So I took both a white tee-shirt and a pink tee-shirt, just in case.

At one of the seminar booths a woman asked me if I was a survivor and I said, "I hope that I will be." She said, "When were you diagnosed?" I told her that I found out the beginning of August that I had breast cancer, but that I hadn't started treatment yet. She said, "Well, you're here now and you're alive, so you're a survivor."

I looked around the room at all of the women, most of them "survivors." There was a certain sisterhood--like a click or a club into which I was being initiated, but didn't belong. They all smiled and welcomed me and asked me if I wanted to volunteer for this or that or to join a Dragon Boat team comprised solely of breast cancer survivors. All of a sudden I was a member of a group that I didn't feel any connection with and I certainly wasn't going to display my private illness to the world, least of all to a group of women who seemed to be acting strong outwardly when I knew that deep down inside they must be as frightened as I was.

The day of the race I donned my pink tee-shirt and joined my group, which included my two sisters, a niece, my sister-in-law and a few close friends. One of my friends, Pam Brugger, is also a survivor so the two of us led the pack with our pink baseball caps, bright pink tee-shirts and big white athletic shoes. There were literally thousands of women participating in the Race-- a sea of pink and white moving over the streets of Portland. And there were just as many spectators cheering us on with music, shouts of joy and words of encouragement. When I experienced the overwhelming support of those in the race and on the sidelines, who gave up their weekend for the cause, I was moved to tears. I was proud that I was doing something to help protect others from the deadly disease.

But when the race was over and my team and I drove to a lunch spot a few miles away I took off my pink tee shirt because I didn't want strangers looking at me with pity and I didn't want special treatment by the restaurant staff. Besides, pink isn't my color. Yes, it was about me again. I was in total denial.

In retrospect, I am so glad that I joined the Race for the Cure. I realized that it really wasn't about me after all. It was about finding a cure so that other women (1 in 7) won't have to join my exclusive club.

The 2007 Komen Race for the Cure is coming up September 27. Don't forget to participate by entering the race or donating money to the cause.