longer than 5 years. I found out that going through the chemotherapy treatments was devastating enough, but the financial challenges that came and the lack of information was just downright emotionally draining. The result was there is no early diagnosis of IBC, and I attribute my beating the odds by having a surgeon that knew the signs of IBC, being pro-active in pulling my medical records, not being afraid of asking tough questions and positive family support. While in the hospital I decided to fight for information that would save lives.
Facing breast cancer was not easy and I don’t know why I was dealt this hand of breast cancer. However I have it and I have a whole lot of life left in me to live. I believe that it’s not up to me to second-guess the “why” of it but to continue to fight and live the best life I can with the time I have left. I defied medical statistics.
Fighting 4 the Tatas Was Given Life
Joshlyn started chemotherapy treatments June 6, 2011. During her chemotherapy treatment and all the side effects accompanying the treatments she reached out to her daughter Jacqueline and asked for her help starting a non-profit organization dedicated to changing all the negative information regarding Black women and woman of color and to bring awareness to Inflammatory breast cancer. With the help of a very supportive daughter, together they started researching, studying everything and reaching out to as many people in the medical world open and willing to talk with them. They spent hours on the computer just to find the same information and days on the telephone reaching out to other breast cancer organizations with very little success. I became involved in patient advocacy and educating women all while working on the development of our organization. On October 17, 2011, they became a tax-exempt non-profit organization. November 2, 2011- I had a bilateral mastectomy. One year later, on December 19, 2012 we received our Federal income tax under section 501 (c) (3) status. Fighting 4 the Tatas breast cancer organization did not start as many non-profits do, with fame and money. It has been created out of love and desperation to save Joshlyn’s life and other women and men fighting inflammatory breast cancer and triple negative IBC.
Joshlyn, strong entrepreneurial skills have elevated our organization as a key supporter, educator and patient advocate in the Inflammatory breast cancer world with a presence among researchers, medical, patients and care giving organizations. Together the team at Fighting 4 the Tatas Breast Cancer Organization works hard to carry out their mission. Our research focus has evolved over the past six (6) years, in the beginning we focused on understanding inflammatory breast cancer (IBC), bring awareness to communities that have never heard of this form of breast cancer and the issues affecting women and men outside of the cancer itself and why everything you read say" Black women die more than white women" with IBC.
We refused to accept the notion that because you are a Black woman your life expectancy is only 2 to 3 years with a 40% survival rate. Our team went on a quest to learn all we possibly could about Inflammatory Breast Cancer treatment and the medical industry where it relates to women of color. I started speaking at seminars, conferences, churches, and on radio shows, working with top researchers trying to answer this question. Speaking from personal experience and extensive research, this organization has touched many people in the USA.
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DON’T ASK ME TO “GET Over” my history with breast cancer
One of the biggest emotional setbacks that breast cancer survivors deal with post treatment is the expectation from their family, friends and caregivers, that survivors should “get over it” and join life in its entirety. It's not that simple!
Six years have passed since I was diagnosed with inflammatory breast cancer May 26, 2011. I was 60 years old, married 40 years, the mother of two adult children, the grandmother of one granddaughter and 2 grandsons a very successful entrepreneur and innovative business women.
My journey started December of 2010 with a visit to my chiropractor to have my back adjusted. This was my first visit with this chiropractor and his routine was to take a full body digital picture for his records. Three days later I received a call requesting I return back to his office. Once back in his office he pointed out an area of concern. He noticed a calcification in my body and was afraid it was cancer. He suggested I go to my primary care doctor immediately. Once at my primary care doctor with the digital picture in hand, the primary care doctor laughed at the fact that a chiropractor could find cancer with a digital picture. Needless to say they ignored it. An appointment was made for February 8, 2011. By that time I was having sharp stabbing pain in my right breast. I did not know what was causing this pain, therefore a mammogram was ordered for March 16, 2011. The finding was ill-defined density seen in the upper outer quadrant of the right breast. I received a letter from the radiologist saying they needed a more definite diagnosis. April 18, 2011, my next mammogram appointment I was experiencing swollen breast and my right nipple had turned in, my breast was warm to the touch, very tender and itching. April 21st an ultrasound found an area of concern a solid mass.
At this point I felt it was necessary to contact my children and daughter in law. Everyone started researching the internet, and talking with people they knew in the medical field. “It was getting real!” May 16, 2011, I had an ultrasound guided needle biopsy which revealed my breast was invaded by high grade infiltrating ductal carcinoma.
I contacted my daughter and daughter-in-law, my daughter-in-law contacted her friend, a doctor to take a look and give his opinion; we e-mailed the prints out that I provided from the scans I got from my medical records. The next day I was informed I had breast cancer. With this advance knowledge I felt I was prepared for my appointment on May 26, 2011, I WAS WRONG! Never in life did i think I was going to get the news I received. May 26, 2011 was the day I received what I consider to be my death sentence. I informed the surgeon I knew I had infiltrating ductal carcinoma, the surgeon said remove infiltrating and put inflammatory in front of ductal carcinoma because that was the clinical name of my diagnosis and the most important name. The surgeon informed me that this was not your regular breast cancer, and it was not treated in the same way as other breast cancers. To make matters worse, my survival rate was lower than typical breast cancers, and with an inflammatory breast cancer diagnosis and the fact that I was a Black woman my survival was 40% and I had 2-1/2 years to live no
Fighting 4 the Tatas Breast Cancer Organization is a nonprofit, tax-exempt charitable organization under Section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law.Copyright © Fighting 4 the Tatas Breast Cancer Organization. All rights reserved.
Jacqueline C. Johnson
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