Milford, Michigan 48381
Common IBC Symptoms:
Things You need to know:
Mammograms usually don't pick up IBC because so often there is no lump.
Why - Reason #1
Doctors misdiagnose Inflammatory Breast Cancer as a breast infection or mastitis.
Why - Reason #2
We need to push this message across the country.
Our group of dedicated advocates are, and a brief message about each one of us.
These are TIPS that doctors and patients have given to people dealing with first symptoms of Inflammatory Breast Cancer, plus TIPS from patients who have gone through chemotherapy.
The information contained on the 'eraseibc.com' web site is presented for the purpose of educating people on Inflammatory Breast Cancer. Nothing contained on this web site should be construed nor is intended to be used for medical diagnosis or treatment. It should not be used in place of the advice of your physician or other qualified health care provider. Should you have any health care related questions, please call or see your physician or other qualified health care provider promptly.
Education is the MOST powerful tool in the fight against misdiagnosis and improper treatment of Inflammatory Breast Cancer.
Our Foundation's mission is to educate the public and the medical community when needed, that this form of breast cancer is different and is rarely picked up by mammograms.
Towards this mission, the third
Wednesday of the month our
radio show, called
IBC FACT & FALLACIES,
will dispel the myths and help educate our listeners.
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"Life isn't about waiting for the storm to pass....It's about learning to dance in the rain"
The Inflammatory Breast Cancer Foundation is a group of concerned citizens who came together with the hope of making a difference in the way Inflammatory Breast Cancer ( IBC ) is perceived by both the general public and the medical community.
Our ranks come from IBC patients, Physicians, the Media and those affected by IBC.
Our mission is to change the perceived notion that all breast cancers have a lump. The medical community has not been educated to a degree where they can catch this deadly form of breast cancer earlier than stage IIIB. This is not acceptable.
We will do a national canvas of medical continuing education seminars, radio shows, television, in person interviews and reach as many people as possible to spread the word there is more than one type of breast cancer, and that IBC can be deadly if not diagnosed properly. Countless women are fighting their own health care physicians to get a proper diagnosis, which has to stop. Through education and awareness, this can change.
Among our supporters are men and women who have lost wives, sisters, mothers and daughters. We all know that regular breast cancer has been researched and many good things have come from what other grass roots organization's have done. We all know what the Pink Ribbon stands for, that women and men should look for a lump.
Now we need to educate with every medium that is earthly possible that there is a breast cancer that we have not been told about.
And we will.
Some of the things I do to promote awareness of IBC such as attend as many BC functions, walks, health fairs as I can to hand out brochures and talk to people about IBC....I want to add that much of the time Vince, my Life Partner and the rock that has supported me thru all this goes with me and walks around in the other direction dong the same. I also hand out brochures and talk to just about everyone that will listen(standing in lines for whatever,when purchasing in a store I hand a brochure to the clerk, I leave a brochure with my receipt in restaurants, etc. Why do I do this? Because I remember the devastation I felt...when I heard these words on Dec 20, 2005 .."You have Inflammatory Breast Cancer, there is no time for a second opinion...there is no time for anything..we have to get you into treatment immediately to save your life...that is if ANYTHING will!" I , of course, like most had never heard of IBC. I do this also and especially because I am so tired of hearing the many stories of young women dying because they were subjected to delayed and/or misdiagnosis. I am happy to report that at the latest ACS WALK , I received more "yes, I HAVE heard of this than ever before( some said I got i from you last year..but others said they saw it on tv or the internet...so we ARE making a difference!)
Sunnie is one of our BRAVE, STRONG voices!
I do have a life aside from IBC such as I took up a hobby of making beaded jewelry, which I got a bit carried away with and since I only have one neck and it is a very expensive hobby,at the urging of friends, I decided to try to sell some (a % of which goes to IBCF). Vince and I also volunteer one day a week At the Lynn Cancer Center in Hemotology-Oncology Dept working with Patients & Doctors. Sometimes people ask why we do this and don't we find it depressing....far from it..it is very gratifying and we find that we get much more from the attitude and courage of most of these patient than we give. I've recently been asked to take on the training of new volunteers in this dept (unfortunately an extremely busy one..sometimes over 200 patients in a day). which I'm happy to do. I also like to play maj jong and cards . I love to play golf( although some would not consider me a true golfer, but who cares...I enjoy it!)I am also a very proud grandmother of 5.. they make the sun shine... Vince has 4 so together we have 9. We don't get to see them as much as we like, but love the phone calls and SKYPE. I love being busy and am determined to make my life take charge of the cancer rather than the other way around. After all, cancer does NOT define us!
President & Treasurer
Jenee was only 32 and her little girl had just turned 2 when IBC struck without warning. But this former teacher has become a valiant spokesperson for this disease and as she says, "It's my passion to educate people about IBC because it is a little known disease which requires early detection. Our foundation was born out of a large number of forces coming from all different directions. All for the same reason.
So much has been accomplished in a short time. Lives have been saved and projects have been put in motion that will lead us to a cure for IBC. The collaboration of dedicated people from around the globe has proven to be unstoppable.
Peggy was diagnosed with IBC in April 2007, after being misdiagnosed for 6 weeks. She is a wife (married to Alan), mother (of 2 wonderful children Samantha & Jack), step-mother (of Jessica), friend, sister, colleague and more. She started the first “IBC Get Together” in Michigan, was instrumental in getting the Michigan IBC Proclamation passed for October, and has been a continual advocate for IBC.
She has recently started fundraising through Caring Baskets by Design, whose goal is for every IBC patient to receive a gift basket to ease their treatment journey. A portion of the proceeds of the sales goes to the IBC Foundation and breast cancer research.
Peggy was recently interviewed by her local television station which you can watch HERE.
Alan is a Real Estate broker and builder, and a Michigan State delegate from his district.
Alan is also the husband of Peggy Stephens, IBC survivor and has become a staunch advocate and public speaker on behalf of IBC and the IBC Foundation. Alan stays politically active in his home state of Michigan.
Advocate & Educational Outreach Specialist
Jacqueline has been an advocate speaker of breast cancer issues for over eight years, but with the loss of her dear friend in January of 2008, and a promise to her friend, Inflammatory Breast Cancer education brought a new passion to her life.
"It was only God that directed me to the IBC Foundation website. People, women and men have never heard of this insidious disease. I believe more should be said and done to spread the word about IBC. I've always just been local, speaking at churches, word of mouth, but the public, the media, newspapers', magazines, radio stations, television stations, all medical staff and our government should be MORE involved. It is unacceptable that more is not known"
Marilyn "Mare" Kirschenbaum
Volunteer, formerly Vice President
Mare began the IBC Journey in 1997, when her daughter Karen was diagnosed with this insidious disease. Fortunately she continues to do remarkably well!
Her first attempt at spreading the word was when she wrote to NBC5 in Chicago and their response was the first television segment on IBC on the ten o'clock news.
Mare has been and continues to be our cheerleader, staying on top of news, advocate issues, and is a graduate of Project Lead.
Rich served in the Army in '67 and 68. He worked as an administrative associate and then as a project coordinator for Rockwell Automation's New York office. for 28 years. At the same time he was working as an Emergency Medical Technician in Passaic County, NJ (not volunteer). He was an intake coordinator at a hospice company as well as a hospice volunteer.
Married 30 years before losing Doracina to IBC, Rich proudly says, "our son, Roger, works as the Head of Preservation Department at the University of California San Diego. He is married and I am very proud of both him and his wife, Beverly."
Kathy began her Inflammatory Breast Cancer (IBC) Journey on December 8, 2005. This was her second primary breast cancer, in the same breast, within an almost six year period. Her first breast cancer was diagnosed on February 1, 2000 as non-invasive Ductal Carcinoma Insitu (DCIS), Stage 0. Due to some complications, she had a stereotactic biopsy along with three lumpectomies, 33 radiation treatments, and was prescribed an anti-estrogen drug called Tamoxifen, which she took orally on a daily basis. Due to severe side effects from the Tamoxifen, her oncologist took her off the drug within six weeks. Kathy was two months shy of being considered cancer-free since her first diagnosis of non-invasive DCIS in 2000, when her IBC symptoms literally occurred overnight; waking up the following morning with all visible textbook symptoms of IBC; not cognizant of what she was dealing with at that point in time. Shortly after that point, she returned to her original oncologist and once she took a look at Kathy's symptoms, she ordered an immediate biopsy the following morning, and from that point on, everything moved very quickly.
In an attempt to get the word out regarding this most aggressive and lethal form of breast cancer, Kathy informs everyone she meets, including men, and the telemarketers that call her home. She was also interviewed by the reporter from The Burlington County Times, Courier Times and The Intelligencer; all located in the Bucks County, Pennsylvania area. It is her passion to inform as many people as possible. She feels strongly and is so dedicated to getting the word out; to tell people this is your life and by doing in-depth research or having someone close to you do it for you, since you very well may be in shock after hearing your diagnosis; can possibly save your life and the lives of many others. EDUCATION IS POWER!!!
Kathy believes any person diagnosed with IBC is presented with a forever life-changing challenge, and considers it a "NEW NORMAL" way of life. She feels if a person is fortunate enough to obtain excellent healthcare coverage when diagnosed, it is imperative to seek medical advice from a top-notch doctor at a top-notch facility. She also believes acceptance, being tenacious, having a strong constitution, and a strong FAITH is what definitely is needed to battle this insidious disease.
In 2001, Doug's beloved wife, Patricia, was diagnosed with Inflammatory Breast Cancer. After a long, brave fight, she lost her battle to the disease on January 1, 2005. Mr. Jenks is very focused on raising awareness of IBC and helping other IBC survivors and their spouses and loved ones.
Mr. Jenks devotes significant time raising funds and developing programs to support the IBC Foundation with its mission.
Joshlyn Earls has joined forces with our foundation to help educate the public and the medical community, with a deep concern for statistics concerning the lack of awareness for the African American community. "The statistics state that our population is hardest hit by IBC, but I can hardly find anyone", Joshlyn stated. With her background in sales and other educational venues in her past, and now president of 'Fighting 4 the Tatas Breast Cancer Organization' in California, she will be a very valuable asset to our foundation's work. Her resume is long with amazing accomplishments in 'firsts' for her area's of expertise. Her public speaking background will also be an attribute that our foundation can pull from for education.
Joshlyn's husband Dennis of almost 40 years, their two children and three grandchildren are her driving force.
Adrian McClenney a 42 year old wife, mother, grandmother and a community advocate, was diagnosed on May 19, 2011 with Inflammatory breast cancer, after being misdiagnosed for 5 months. Adrian lived with pain, an itchy breast and could barely lift her arms before she was able to get help. After 16 cycles of chemotherapy treatments, a double mastectomy, 27 lymph nodes removed and 37 cycles of radiation treatments, she is now very passionate about helping others diagnosed with IBC.
She is the President of Sisters Network Miami Chapter which is an affiliate chapter of Sisters Network Inc., a National African American breast cancer survivorship organization. Adrian wants to advocate/volunteer for our foundation to educate about this deadly disease. Mrs. McClenney has a mindset that if we can save one life, that particular individual may save two lives, she feels that will save the masses in all Nationalities. She does not want anyone to endure the challenges that she endured due to this disease.
Co Founder, and recent
Chief Educational Officer
Medical reasons have brought Patti's involvement with the Foundation to an end. This was a hard but proper decision, and she knows that the current board and volunteers will move the Foundation forward into 2013.
Patti's only daughter Tina was diagnosed with Inflammatory Breast Cancer in 2003, which had already metastasized to her liver. Tina pleaded with her mother to write about this under reported and overly misdiagnosed type of breast cancer. Not finding anyone who was willing to take her writings, (for fear of scaring the public), she turned to television. When she met the staff KOMO TV in Seattle Washington, she found a physical voice and a way to get the message to the masses.
On August 29, 2007 Patti lost her beloved daughter, Kristine "Tina" Turck.
"Knowledge is Power" says Patti, is the only way we can win this war" The battle of education in the public arena as well as the medical community is not over, and will not be until not one more woman is 'surprised' by a diagnosis of Inflammatory Breast Cancer.
For reasons beyond her control, Sunnie has had to leave us. The Foundation is losing an amazing advocate, but we know she still educates whenever she can and always will.
Sunnie was diagnosed with IBC in December of 2005. With her diagnosis she realized the lack of knowledge in the general community, and has been a driving force for her State of Florida to have an IBC Proclamation designated.
Sunnie, a survivor and adamant advocate, has made it her mission to spread the word where ever she goes. She has been interviewed both in newspapers and television, making sure everyone is educated about the signs and symptoms of IBC and was also the instigator of the New York state proclamations for IBC Awareness. Sunnie is a volunteer for the American Cancer Society and Susan G. Komen, spreading the word about IBC through them and their events, plus a volunteer at the Lynn Cancer Center in Boca Raton, FL
Sunnie and Claudia Fauver are now on YouTube advocating for better awareness.
Dr. Massimo Cristofanilli
|Dr. Tom Buchholz
Executive Director Morgan Welch Inflammatory Breast Cancer Program and Clinic
Division Head ad interim, Division of Radiation Oncology
Professor and Department Chair, Department of Radiation Oncology
MD Anderson Cancer Center
|Dr. Paul Levine
Research Professor in the Department of Epidemiology and Biostatistics and Clinical Professor of Medicine at the GW Medical Center.
|Dr. Sandra Swain
Medical Director, Washington Cancer Institute
Washington Hospital Center
Dr. Swain has an international reputation as a leading authority both in the emergent field of inflammatory breast cancer treatment and in the treatment of early breast cancer.
|Dr. Lupe G. Salazar
Assistant Professor of Medicine
Tumor Vaccine Group
Division of Oncology
University of Washington
|Dr. Beth Overmoyer MD, FACP
Assistant Professor of Medicine
Dana Farber Cancer Institute
|Dr. Kathleen T. Ruddy
Founder and President
Breast Health & Healing Foundation
Dr. Ruddy is a breast cancer surgeon and international healthcare
leader whose interests include
the primary prevention of breast cancer, the human mammary tumor
virus, and the polyvalent preventive breast cancer vaccine.
Dr. Fredika Robertson
|Dr. Kenneth Van Golen
Associate Professor of Biological Science
and The Center for Translational Cancer Research
Senior Research Scientist Helen F. Graham Cancer Center
|Dr. Naoto Ueno|
Executive Director of the Morgan Welch Inflammatory Breast Cancer Research Program and Clinic
The University of Texas MD Anderson Cancer Center.
Tenured Professor, Department of Breast Medical Oncology
Division of Cancer Medicine, and a practicing physician-scientist with experience conducting both targeted and gene therapy clinical trials in patients.
|Dr. Gabriel N. Hortobagyi
Professor of Medicine Nellie B. Connally Chair in Breast Cancer Chairman, Department of Breast Medical Oncology Director, Multidisciplinary Breast Cancer Research Program The Nellie B. Connally Breast Center M.D. Anderson Cancer Center, Houston Texas
This page would not be complete without our friends from KOMO TV/Fisher Communications in Seattle Washington. Jon Knorr KOMO camerman and Michelle Esteban reporter, pictured below, have followed the progress of our educational message from the beginning.
Although not on our board of directors, we honor them for all the diligent work they have done.
Michelle, thank you is not enough for the light you have shown into the dark tunnel of Inflammatory Breast Cancer. Your awards are testament to your devoted coverage of this devastating disease.
Jon, thank you for being sensitive to the many women you have photographed. We honor you for taking this subject, through your work, and bringing reality to a very difficult subject.