Sherrie

June 13, 2005

Hi,

My name is Sherrie Deen; I am 49, live in Arlington, TX, with my mother-in-law, husband, our two sons - Clay, 19 and Clint, 14, and our 3 dogs - Zhoe, Cali, and Skyler.

My life as I and my family knew it ended forever Tuesday November 2nd 2004 when my breast Surgeon called me on my cell phone to let me know the results of my biopsy from the day before. I was told I have Inflammatory Breast Cancer. I stopped breathing. It took awhile for me to get my breath. I still stop breathing at times if I let my mind wander too far into the abyss. I have to constantly train myself not to go there.

I had been to 3 female doctors and a female tech (gynecologist, dermatologist, mammography tech and a nurse practitioner) and the rash on my breast did not raise a red flag with any of them. I had the rash for 4 months and didn’t really think anything of it. The Dermatologist gave me some crème to use for a week, my doctor gave me some antibiotics, and my gynecologist just shrugged her shoulders when I showed her.

I was one of the lucky ones I guess; I actually had a spot show up on my mammogram. I was fixing to have a breast reduction surgery, and my plastic surgeon wanted a current mammogram, or I wouldn’t even have had one done. I worked in an office with over 200 women, and none of us had ever heard of Inflammatory Breast Cancer. WHAT IS WRONG WITH THE MEDICAL INDUSTRY???

I feel our medical professionals have an obligation to educate the public and have failed miserably. By now there should have been a standard pamphlet created to educate women and men of all 14 breast cancer types and symptoms. These pamphlets and educational classes could have saved numerous lives.

These pamphlets should be given to us in sex education classes starting with grade school, middle school and high school. We should be taught about rashes at the same time we are being shown how to give ourselves a self-exam.

Our regular M.D.'s, Dermatologists, OB/GYN’S, and the techs that give us our mammograms should give these pamphlets out and be aware of all the symptoms themselves regardless of how rare it is. They should have pictures and the list of symptoms of IBC on their walls if they have trouble remembering.

There have been a lot of needless deaths due to the negligence of our medical professionals, and if a pamphlet and education could save one IBC life, it would be worth it. A friend of mine went to her OB/GYN because she has had a rash on her breast for two months. She has already done the Dermatologist route with the crème with no results.

Her OB/GYN told her it couldn’t be IBC because her breast wasn’t warm! HELLO, again lack of education in our medical industry. My breast was never warm, it never itched, it never turned red, my skin never got thick, it was just a pink rash that I let go for 4 months thinking, it’s just a rash.

Because of this lack of education, women like me unknowingly let their rash go for months, some of them for years before getting the correct diagnosis, and by then it is too late for any chance of surviving. Some women I read about have had to demand to have a biopsy done after doing their own research. By then their cancer had already metastasized.

I have read stories of two 12-year-olds and an 18-year-old as well as men with Inflammatory Breast Cancer. This cancer strikes a lot of young pregnant women or young women while they are nursing their babies. You are all probably already aware of all this. I don’t know who or what it would take to make sure people are educated about the symptoms of all breast cancer types, but I do know it needs to be done.

We don’t have a cure yet, but if people were aware of all of the symptoms, they could be diagnosed earlier, which is critical for a better chance of survival. I did find salvation in all of these IBC websites, and I consider the original creators, Pete Bevin and Menya, heroes for those of us with IBC. I have yet to find any better source for information on this type of cancer.

It now feels like my family and I are riding on the tailwind of a deadly tornado, and I am not sure where we will end up. They admitted me into the hospital 11/5/04, 3 days after my diagnosis, to insert a port for chemo which started the following Tuesday, 11/9/04.

I had scans done on Monday, 11/8/04. The results were uplifting for a while because the scans showed the cancer was localized in my breast, but after 5 killer chemo treatments given to me every other week, my cancer oncologist decided it was time for surgery and never once checked to see if the chemo was working. (We all know the premise of chemo before surgery is to shrink the tumor and stop it from spreading and make the surgery easier. If the chemo is not shrinking the tumor, then you need to try another chemo).

You see, the first scans showed that my lymph nodes were clear. My first oncologist never showed me the second set of scans that I had to request be done before surgery. Both my breast surgeon and I had to keep reminding this oncologist about what was on my path report and what type of breast cancer I had.

After surgery on February 15, 2005, (double mastectomy), my breast surgeon said it had spread to 8 out of 10 lymph nodes, so I said to her, in essence you are telling me my cancer was non-responsive to the intense chemo that nearly killed me! She just looked at me and shook her head 'Yes.' I suffered through chemo for nothing!

Needless to say I have changed oncologist and found one that specializes in breast cancer and knows about IBC. If I could tell anyone who has been diagnosed with IBC anything from my experience, it would be to find a breast cancer specialist to begin with.

My new oncologist started me on radiation 4 weeks after my surgery and again, because I have IBC I had to get the shotgun blast radiation (covering most of the left side of my chest) vs. a single shot. They put me on an oral chemo called Xeloda, which intensifies the heat from the radiation.

Green gooey stuff started oozing from my chest, and I started running a fever of 103.5 on the weekend after my 31st treatment, (severe burn infection). I had 4 treatments to go.

They put me on antibiotics for a week, and apparently they were not working, and I ended up in the emergency room, not because I wanted to go mind you (yes I am stubborn), but because I called my friend Vicki at work (we work for a hospital supply company) and told her that blood had started gushing out of my chest when I took off my bandages that morning, and I needed her to help me find some bandages that wouldn’t stick to my wound, thinking that would take care of the problem.

Well, she said 'OK,' hung up the phone and then took off work, called me from her car on her cell phone and said: 'Get your butt ready. You are going to the emergency room.' They kept me in the hospital on IV antibiotics for 3 full days and sent me home with 2 weeks worth of high dose antibiotics.

My oldest son Clay said it looked like someone torched my chest. I am now over the infection. I have been put back on Xeloda (oral chemo) and will be on it for 2 to 3 more months and then put on some type of maintenance drug they are now trying for ER PR positive type cancer and pray for no relapses. It is totally in God's hands now.

God Bless
Love and good health to all,

Sherrie Deen
sldeen@sbcglobal.net