Scars Of Strength
On Inflammatory Breast Cancer Day, October 4 we started our first international social media campagin, #ScarsOfStrength. Many of you answered the call and have shared your stories and scars with us as part of our global movement and we thank you for getting involved in helping to educate others about this aggressive disease.
Below are the submissions we received from brave women who have gone through inflammatory breast cancer or are still facing it. Each story is written in the patient’s own words.
Spread the word, share our page, and let’s get the word on IBC out there. Together we can educate the world. #WeAreIBC
#NoLumpStillCancer #OrangeIsTheNewPink #ResearchMatters #HopeAlways
In March of 2019, I had recently weaned my daughter and it felt like my milk had come in again. I wasted time expressing milk and trying to massage out the “blocked duct”. In May, I went to the doctor because it wasn’t getting better. Within 3 days of going to the doctor, I was diagnosed with IBC, triple positive, stage 3B, and I consider myself one of the lucky ones. I later found out, Terry Lynn Arnold of the IBC Network had just given a talk in March at the hospital I was diagnosed in with my new oncologist. The IBC Network has provided me with evidence based research to help me and my oncologist come up with the best plan of care. After 15 months of treatment that included 3 types of chemotherapy, a bilateral modified radical masectomy, radiation and immunotherapy, I have finally completed my trimodal treatment plan. I leaned on the network anytime something new came up with my plan of care but also for psychological and emotional support.
I was diagnosed at age 29 in 2015, just one month after being proposed to. I had no time to preserve fertility. I went immediately into treatments. I went through 16 rounds of chemo, 44 rounds of radiation and a mastectomy. I had a single mastectomy and hoped to one day have the chance to birth and feed my own child. I completed treatments in 2016 and at that time, doctors said that chemo had in fact affected my fertility. I didn’t give up and once cleared to try to get pregnant, I saw a fertility specialist, and by 2018, I gave birth to a beautiful miracle. This photo is my most cherished photo.
So, here I am, 5 years post-Inflammatory-Breast-Cancer diagnosis and living with the aftermath of treatment. While I’m very happy that I’m in a state known as NED (No Evidence of Disease), the cost of the rigorous treatment needed to survive IBC has left me with numerous side effects, that range from mild to severe every day. Most people say I look great and assume I’m 100% – but what they don’t realise is that like many other cancer survivors, I’m well-versed in hiding the pain and exhaustion of what lies beneath.
There seems to be this notion that after cancer treatment ends, we should all be able to bounce back and pick up where we left off, but the reality is very different for many of us. The physical and mental health issues associated with cancer are long-lasting and widely misunderstood. This is why I have decided to participate in the ‘IBC Scars of Strength’ campaign, laying bare my reality in the hope that it will not only help me continue to heal, but also to advocate for those who may find themselves in a similar reality.
I was diagnosed the day before my 39th birthday, in 2003. 17 years on, my face now has many more wrinkles than my scar! Luckily I had a medical team who knew how to treat IBC. Even in 2020, many are not so fortunate so the IBC Network is crucial in the research and awareness of this disease.
My name is Kerri and I was diagnosed with IBC in May of 2019. I was 48 years old with no family history. I had a clear mammogram in June of 2018 and felt a lump in March of 2019. A diagnostic mammogram was ordered with ultrasound. A biopsy and lymph node aspiration was performed and it was cancer. I was diagnosed with stage III inflammatory breast cancer. Treated with chemo which started May 24th and ended Labor day weekend. I had a modified radical mastectomy on October 17th and started radiation on December 2nd. The road has been long but I am taking Letrozole and Ibrance and doing well.
If you want or need more details of my journey I will be happy to give them.
Seeing this campaign on Instagram has given me the courage to go forward with my story. If I can make a difference to someone that makes it all worth while.
Diagnosed at 28 with inflammatory breast cancer Liz took this photo one year after being diagnosed, following chemo, bilateral mastectomy and radiation. Now a 10 year survivor she continues to wear her scars proudly. Liz supports the IBC Network Foundation and believes in their mission to raise both awareness and funds to support life saving
My story started with a lump in my armpit that was painful in October 2019. I just assumed it was bacteria from shaving my armpits or something along those lines and ignored it moving on with life. Fast forward to December of 2019, I still have the lump in my armpit and I start noticing a horrible itch on my right breast. Having sensitive skin this really wasn’t that alarming until one day when I got out of the shower I noticed my breast was so much larger than my left. I noticed my nipple was completely flat. I noticed the skin looked kind of like a orange peel. Now the red flags were raised, I started googling my symptoms and it lead me to IBC. initially I didn’t believe it was possible for me to have this rare disease. I waited a few days thinking about it and researching. I was finally convinced of my situation. After that I went to my doctor who advised me not to be alarmed. It likely wasn’t cancer due to my age and it looked potentially like a infection. They still set me up with a ultrasound and mammogram a month out from that appointment. My anxiety grew because I didn’t believe I had a month to get started with treatment. After a few days I went back to inform them of the intense pain in my armpit and my growing anxiety about the possibility of cancer my primary care got me a ultrasound/ mammogram same day. After the mammogram the radiologist told me it was just a infection in my breast and that I didn’t need the ultrasound unless I wanted it. I decided I wanted it just to be safe. I felt foolish I had made a big stink about having cancer at this point but I still pushed forward. As soon as the ultrasound started i could tell something was wrong. The tech grew quiet and was taking a lot of images of my breast. The radiologist came in incredibly alarmed and wouldn’t tell me anything. All he told me was I needed a breast MRI as soon as possible for answers. Fortunately 2 days later I was seen by a breast cancer surgeon who officially gave me my diagnosis and biopsied my tumor. From there everything moved very quickly. I had a PET scan the following day to determine it had not spread further than my lymph nodes. The following Monday I had my port put in and starting ACT chemo on 1/13/20. I went through 6 months of chemo, double mastectomy, and 30 rounds of radiation (that I finished TODAY). I feel so lucky to be here today sharing my story. Had I continued to brush symptoms off or not express urgency to my doctors my story would be different. I’m so thankful for the support and knowledge I received from the IBC foundation during my journey. It was so nice to know I wasn’t alone. My goal now is to raise awareness and research to continue to give women the best chance at survival.
Diagnosed just before my 51st birthday, February 2015. ER/PR- HER2+ IBC
FECT, radical MX and ANC, radiotherapy and cured!
Huge thanks to the researchers and scientists behind my treatment. Thankfully, my consultant was on the ball, but IBC support, particularly Caroline Sands were there to make sure my treatment was appropriate and timely.
But then the Bugga returned over the summer of 2017 and spread to lung and abdomen.
Initial 6 x 3 weekly Docetaxel (Much less brutal 2nd time around) and ongoing Herceptin and Pertuzamab Has brought me to where I am now. Been NED for more than 12 months. I look well, feel well, (apart from fatigue and Pertuzamab itch I’m learning to manage.)
Loving life and making memories,
Also short info about me: At 36 years old I was diagnosed with stage 3 inflammatory breast cancer. At the time my children were 5 and 3. The IBC Network was critical to my survival. I learned that treatment, surgery and radiation was very different for inflammatory breast cancer patients. I had to switch providers in order to receive standard care and I wouldn’t have know this had it not been the information I received from the IBC Network. This contributed to my survival and now I’m no evidence of disease and thriving.
I was diagnosed with metastatic inflammatory breast cancer in Oct 2014, at the age of 29, while pregnant with my son. I knew about breast cancer, but thought it was no big deal, it was a curable thing now. I was young and had no family history of cancer. I had no idea about different types of breast cancer… I ignored my swollen breast thinking it was just getting ready to make milk. I didn’t bother getting it checked out until I found a lump, which turned out to be a swollen lymph node. If I had known about the symptoms of inflammatory breast cancer I would have gotten checked out much sooner, before it spread to my liver and bones. Luckily I was able to start treatment, have a healthy baby boy, and then continue treatment until I achieved no evidence of disease, a status I have help onto for 5+ years now. I had a bilateral mastectomy in Dec 2015 and remained flat for 2 years before deciding to start the recon process. I have many scars now and they have been earned with strength. I support IBC network because they truly educate and focus on educating and funding research to this aggressive cancer.