As 'Pink-tober' comes to an end, I'd like to take the opportunity to share my story and educate our nursing group about the kind of cancer I had: inflammatory breast cancer (IBC). For the oncology nurses in the group, you may have heard about this rare and very aggressive form of breast cancer but, what you might not know, is that there is a specific treatment protocol, much different from other breast cancer treatments. It is based on research from MD Anderson in Houston, and it is helping decrease mortality rates all over the world...
I noticed a small red spot on my left breast, about the size of a thumbprint in late 2014. I thought I had bumped into something and dismissed it as nothing. A month later, it was still there and hadn't changed so, I scheduled my mammogram which was due anyway. With Thanksgiving, family visits, Christmas, the New Year, and starting a new job, I didn't give the results much thought until I received them in the mail: 'All clear. See you next year.' Shew! It was nothing!
In January 2015, I got really sick with sinus and ear infections which required 2 rounds of antibiotics and finally, a steroid shot. I got better but, the red mark didn't. When I went to the doctor, he said it didn't look like IBC because, it typically presents much worse, like a sunburn with swelling so, he just prescribed me some cortisone cream. I got really upset because I felt he wasn't listening to my concerns about IBC so, he said, 'better safe than sorry' and ordered a diagnostic mammogram. When I went for the mammogram, the radiologist told me almost the same thing: my symptoms didn't look like IBC and, of course, my mammogram was clear. She also sent me for an ultrasound which, showed nothing but, a slight change in the thickness of my skin in that area. She said she still didn't suspect IBC but, with that change from my mammogram a few months earlier, it was enough cause to order a biopsy. Thank goodness!!!
Almost 4 months after I noticed the reddness, I got the call at work. 'Kristina, I'm so sorry. I just got off the phone with the pathologist. I'm just so sorry. Your biopsy came back consistent with inflammatory carcinoma. I'm so, so sorry.' Those words branded in my memory forever...
The next week was a whirlwind of appointments, and calls, and visitors, and fear. The current survival rate was only 30% and I was terrified of leaving my son without a mother. My port placement was scheduled, with chemo induction that evening, in an overnight stay in the hospital. The breast surgeon scheduled my mastectomy following my first chemo treatment, stating she knew about IBC and treats approx. 200 cases a year. (Wrong!) I trusted my doctors to take care of me-and why wouldn't I? Unfortunately, my blind trust almost killed me.
Knowing that I was about to have surgery, I posted in a Facebook group for advice on where to get the shirts with pockets to hold my drains. That's when my guardian angel found me! Amy Pittman saw my post about my diagnosis and private messaged me. She told me I wasn't receiving the treatment protocol for IBC and urged me to reach out to a specialist. She was an IBC survivor and knew I was on a treatment path that would end my life! She gave me resources and, put me in contact with the founder of The IBC Network, Terry Arnold. They both urged to me to get a second opinion at MD Anderson. I stopped what I was doing and got that second opinion, which changed everything. My new oncologist at MDA said, had they done surgery before the end of my chemo, it would have been like disturbing a wasps nest and I would have died in less than 6 months...
My doctors didn't mean me any harm but, they didn't know how much they DIDN'T know about IBC! They had me on a treatment path for other breast cancers and it almost cost me my life which, is why I continue to share my story!!!
IBC Facts:
1. IBC isn't detectable on a mammogram!
2. It almost never presents with a lump or mass
3. IBC is web-like and, cancer cells block the lymph system in the breast. This causes any combination of redness, swelling, itching, pain, or peau d'orange (skin resembling the peel of an orange)
4. Because IBC isn't detectable until visual symptoms appear, it is impossible to detect before stage 3!
4. It is frequently misdiagnosed as mastitis which means, treatment is delayed (hence the high mortality rate)
5. IBC is rare so, it barely (if at all) gets taught in medical schools or nursing schools
6. IBC does not have a specific ICD 10 code so, it is difficult to track (it is just coded as breast cancer)
7. It is more prevalent in African American women and women who are pregnant or breastfeeding
8. Treatment protocol is trimodal: all chemo FIRST, then radical, non-skin sparing mastectomy, and lastly, six weeks of daily radiation
9. Heredity and genetic factors don't seem to play a role with IBC
10. Reconstruction is HIGHLY discouraged until 1-2 years following mastectomy and skin expanders should never be used
11. IBC is diagnosed in younger women than other forms of breast cancer. Even teenagers have been diagnosed
12. IBC has a faster doubling time than other breast cancers
13. The 5 year survival rate is only 40% and I count my blessings every, single day...
MDA has the world's first clinic dedicated solely to inflammatory breast cancer. The Morgan Welch Inflammatory Breast Cancer Center is named after a 24 year old woman who died from IBC. For more information, visit theibcnetwork.org or their Facebook page: The IBC Network Foundation
Posted with permission from the write.
#theibcnetwork #hopealways #nolumpstillcancer
#youngsurvivorcoalition
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