Tracy Keller Speaks of Her Friend Shawn Hupp

The Puget Sound Paint & Coatings Association was founded in 1933 by regional leaders in the paint and coatings industry. They sponsor a number of events throughout the year including; several golf events, group outings to sporting events, raising funds and toys for the Salvation Army during the Christmas season, and raising funds for a local charity at the annual President’s Dinner. The outgoing president selects a charity to sponsor at the dinner. It was at the President’s Dinner that the money was raised to donate to the IBC Research Foundation. According to one PSPCA member, they typically raise $3,000 to $5,000 for their selected charity. The total this year far exceeded the normal donations! Shawn was the Secretary-Treasurer of the PSPCA.

Tracy spoke on April 10, 2003 at the Puget Sound Paint & Coatings Association. Following the talk an auction raised $10,165 for the IBC Research Foundation to continue to pursue it’s goals of advocacy efforts to increase the awareness of IBC, and to facilitate research of IBC leading to better diagnosis and treatment. The IBC Research Foundation is committed to finding the cause of IBC. Tracy’s presentation to those in attendance follows.

There is more than one kind of breast cancer. You don’t have to have a lump to have breast cancer. How many people knew those two facts? If each of you can walk out of here tonight remembering those two things, it will be a great night. You are going to hear both of those facts a couple more times during the next 10 minutes, in hopes that you will leave here tonight remembering them.

You know, Shawn was frustrated on more than one occasion when people would ask about her treatment or condition. They often tried to compare her with someone they knew of that had had breast cancer, but it was never the same. She would say “They just don’t get it.” And, they didn’t. Because Shawn had a different kind of breast cancer. She had Inflammatory Breast Cancer.

My name is Tracy Keller and Shawn was my best friend.

What I would like to do tonight is give you some information about Inflammatory Breast Cancer, which I’ll call IBC tonight, tell you the stories of two women, including Shawn, who had IBC, and we’re going to finish up talking about the IBC Research Foundation, the cause that you are supporting tonight.

I recognize that there are a number of men here tonight, and you may not feel like this topic is for you. But, as Jeff learned when he and Carlye and Lindsye walked in the Avon 3 Day Breast Cancer Walk last summer, the best part of being a man and taking part in a breast cancer initiative is that you get to talk about boobs a lot. So, get ready, because there is going to be a lot of talk about boobs tonight!

Inflammatory breast cancer is one of the rarest and deadliest forms of breast cancer. It is the most aggressive and advanced form of breast cancer, accounting for only about 1-4 percent of breast cancers in the US, but represents more than 25% of breast cancer deaths. IBC has a five year survival rate of only 40-50%, and a 10 year survival rate of just over a 2%. A dismal figure when compared to five-year survival rates of 98% for early-stage invasive breast cancer. On a classification scale of I-IV, it is a stage IIIb at diagnosis, because the cancer has already spread from the interior of the breast to its skin and to the lymph nodes. IBC usually grows in nests or sheets rather than a solid tumor, making it virtually undetectable with a mammogram or ultrasound in all but about 15% of the cases.

The symptoms of IBC are different than those of invasive breast cancer. Now, here comes some of that boob talk I told you about.

Symptoms include:

  • Rapid, unusual increase in breast size — sometimes overnight
  • Redness, rash, or blotchiness on the breast — Shawn’s first potential symptom was a rash she noticed under one arm.
  • Persistent itching of the breast or nipple
  • Ridges, dimpling or thickened areas of the breast skin
  • Stabbing pain and/or soreness of the breast
  • Breast that is excessively warm to the touch
  • Swelling of lymph nodes under the arm or above the collar bone (which happened to be what alerted Shawn of the need to see her doctor)
  • Flattening or retracting of the nipple
  • Nipple discharge or a change in the pigmented area around the nipple

IBC is often misdiagnosed initially. Patients are often mistakenly diagnosed with infections and are treated with antibiotics, delaying proper treatment and losing valuable time. Women may ignore the symptoms themselves, assuming they are only hormonal changes. Even women who routinely have mammograms may go undiagnosed, because there is rarely a lump or a mass to be detected. Shawn had a mammogram just 2 months before she was diagnosed with IBC, and nothing showed on her mammogram. IBC requires immediate, aggressive treatment with chemotherapy prior to surgery which is different than treatment for more common types of breast cancer. Knowing the symptoms of IBC may save your life, or the life of someone you care about.

I’d like to tell you about Marilyn Johnson, whose husband formed the IBC Research Foundation 15 months after her death in May, 1998.

In May of 1996, Marilyn woke up to find that her left breast had grown overnight. The 49-year-old mother of two adult sons told her husband that her breast’s enlarged size made her feel as if she were breastfeeding. Johnson made an appointment with her gynecologist for two weeks later. He did a physical exam and ordered a mammogram. Afterwards, her gynecologist told her everything was fine and what she was experiencing was nothing more than a premenopausal symptom. Marilyn took her gynecologist at his word. By Halloween, a pink spot the size of a silver dollar showed up on her enlarged breast. Once it appeared, it did not grow or change in any way. She thought it was a sign of bra irritation. The rash was still there a month later, just before Thanksgiving. She called her doctor again and was told that, unless it was an emergency, he would not be able to see her until after the holidays. Marilyn had no reason to believe it was an emergency, so she waited for her January appointment. When she saw him, the doctor gave her antibiotics for what he presumed was an infection and asked her to return two weeks later. The antibiotics didn’t work, and after two weeks, her gynecologist sent her to a surgeon, who ordered a mammogram on Wednesday, then a skin biopsy for Thursday, and a needle biopsy for Friday. Within the week, the surgeon’s nurse called to report that she had IBC. A little more than 15 months later, Marilyn died.

Shawn’s story is a little different than Marilyn’s. In September 2001 while Jeff and Shawn and my husband and I were on a golf trip over in Chelan, Shawn noticed the lymph node above her collar bone was swollen and she also felt the lymph node under her arm. She went home and scanned the internet for information. She diagnosed herself with Lymphoma. She immediately saw her doctor, who agreed with her diagnosis, but scheduled her for a mammogram. Following the mammogram, she was scheduled for an ultrasound and then for a CT scan. On October 1st, 2001, they removed a portion of the lymph node over her collar bone for a biopsy, and that is when they found the breast cancer cells. When they found that breast cancer cells were present, she was diagnosed with IBC and began chemotherapy immediately. Shawn did not clearly recall experiencing any of the IBC symptoms other than the ones I mentioned. But, as we all know, this aggressive cancer took her life, less than a year and a half after her diagnosis.

Marilyn Johnson died about two years after the discovery of her first symptom, prompting her husband Owen Johnson, a gas station owner in Anchorage, Alaska, to form the IBC Research Foundation.

The IBC Research Foundation is a non-profit corporation dedicated to the support of research and public awareness and is committed to finding the causes of IBC. 100% of all donations go directly to support the mission and goals of the Foundation. The staff is composed of volunteers, brought to this cause because IBC has touched their lives in some way. Administration expenses are less than 3%, mostly for accounting, tax returns and bank charges. The Foundation has no corporate sponsors and receives no grants. They do not receive funding from any national charity such as the American Cancer Society or the Susan G. Komen Foundation. This is a grassroots effort led and supported by those affected by IBC and their families and friends.

The Foundation has two goals. One is to increase the awareness of IBC symptoms. The message that “there is more than one kind of breast cancer” and “you don’t have to have a lump to have breast cancer” is carried by men and women all over the world, thanks to the IBC Research Foundation. The Foundation also has a toll-free telephone line for men and women to discuss their symptoms or treatment. A 9-year IBC survivor whose is a Registered Nurse answers those phone calls.

The second, but most important goal toward finding the cause of IBC Research Foundation is research. To date there has been little study for this disease, partly because breast cancer advocates and the scientific community have focused on funding research where there is a high degree of survivorship. Research of IBC must become a priority to impact the number of deaths reported from IBC. But it takes much more than simply money for researchers to study IBC. So the role of the Foundation is to bridge the gap between researchers and IBC patients. Since there is no large cluster of IBC patients that researchers can study in their efforts to find the cause of IBC, researchers have to rely on being able to connect with IBC patients all over the country. Among other things, the Foundation has helped a researcher at the National Cancer Institute obtain excess tissue taken at the time of mastectomy. They were involved in setting a standard of care for treatment of newly diagnosed IBC patients, and were part of the planning, grant writing and accrual phases for an IBC Patient Registry. They attend many cancer conferences and have active contact with researchers whose work involves aspects of IBC. They are making a difference.

Just through the development of the brochures many of you have seen, Shawn and her family and friends have raised the awareness for hundreds of others. When Shawn told people about her condition, they often didn’t hear the words “Inflammatory Breast Cancer”. They would only hear “Breast Cancer” and would question why her treatment was so different from regular breast cancer. They didn’t understand the severity of her condition — after all we are led to believe that breast cancer is very curable these days. On the contrary, not all breast cancer is curable. Being able to hand someone a brochure allowed her to let people know that what she had was much different than regular breast cancer. Thanks to Shawn and the IBC Research Foundation, many more people now know that “there is more than one kind of breast cancer” and that “you don’t have to have a lump to have breast cancer”. So bid high on those auction items tonight, the IBC Research Foundation needs your help to continue their work. And Shawn would be so proud to have her name associated with your efforts tonight. Thank you.

Shawn died of IBC on February 17, 2003