I was diagnosed with Stage 3B Triple Positive Inflammatory Breast Cancer (IBC) (also Invasive Ductal Carcinoma or IDC & Ductal Carcinoma in Situ or DCIS) at age 37 on November 6, 2020, in the middle of the Covid-19 Pandemic. Yeah, it is a mouthful and an intense way of saying that I was diagnosed with an extremely aggressive form of rare breast cancer that was being made even more aggressive by my own body. Yet, I felt “lucky” to have been diagnosed with Stage 3B, which meant that I was still considered curable. With IBC everyone starts out as Stage 3, and most are not diagnosed until they are Stage 4. It is an incredibly aggressive cancer where getting diagnosed & into treatment quickly is essential as it grows rapidly in a matter of months but as quickly as a matter of weeks.
I had awoken on October 26, 2020, with what I assumed was some kind of rash or bug bite, at first. As the day went on my symptoms kept progressing. My breast was swollen, red, and hot to the touch. My skin had started to dimple (what they call orange peel skin), my nipple was sinking into my breast, had a bunch of discharge, and was incredibly itchy. I did a self-breast exam in the shower and did not find anything. When I lay down to bed that evening, I did an exam again and that is when I felt it. There was a huge lump on the top part of my breast, another under my breast, and hard/achy lymph nodes. I made an appointment with my nurse midwife the next day and she referred me to an organization in Houston, Texas called The Rose. The Rose helped me get a mammogram, ultrasound, biopsies, and eventually my diagnosis when I didn’t even have health insurance!
What came next was a whirlwind of literally everything. They tell you to take it step by step but if I am being honest, you make it through the whole process from moment to moment. There were so many doctor appointments. I was in the process of getting a divorce, selling my house, moving, & becoming a single mother all at the time of my diagnosis all in the middle of a pandemic. I looked for support online as there was nothing in-person at the time, this is where I first came across the IBC Network Foundation. They took me in with open arms and gave me so much information. Members reached out to me to help me through the process and help me understand what was going on and what would come next.
By December 4th I had my port (an implanted device to get chemotherapy infusions through) in and I was receiving my first dose of TCHP (a mix of chemotherapy & targeted therapy drugs) by December 7th. Chemotherapy & Targeted Therapy were hard, I struggled with a lot of side effects but made it through all 6 cycles of TCHP (every 3 weeks) without having to delay any treatment in March of 2021. On April 16, 2021, I had my left radical non-skin-sparing mastectomy. (Yes, another mouthful) They removed all my skin, my breast tissue, & 23 lymph nodes. (all the lymph nodes under my armpit) I was not eligible for reconstruction right away as that is not the “standard of care” for those being treated for IBC. When my pathology report came back, we saw that I still had a lot of residual disease in my breast and lymph nodes.
People (yes men can get it too) who have hormone (estrogen & progesterone) receptor-positive breast cancer are “easier to treat” because you can target the hormones, which basically act as “food” for cancer. Her2 is a protein that makes breast cancer more aggressive though, meaning it makes it grow more rapidly. Normally people with triple positive IBC would move on to targeted therapy and radiation at this stage. For me, due to a large amount of residual disease, this meant that I would start getting Kadcyla, another chemotherapy/targeted therapy drug immediately. I started this in May 2021 and would need to do 14 infusions in total. I was also set to start radiation. I was still retraining my arm through physical therapy to lift up enough to where I could hold it up behind my head for radiation. I would need 6 weeks of daily (Mon-Fri) radiation with a bolus (a membrane that is placed on the skin to make the radiation a double dose) starting in June.
This is when things got extremely hard. I was still struggling to recover from the initial chemotherapy & surgery and then was thrust into more chemotherapy with radiation at the same time. This is the reason you hear that treatment for IBC is “different,” because it is. The treatment must be just as aggressive as the cancer itself. In radiation, I burned, badly, which is exactly the reaction they were looking to create. My radio oncologist was very pleased, and I was exhausted. Radiation zaps your energy, in high doses like this it is painful, and at times it felt for lack of a better description, like torture. When I was done with radiation though I felt like I could at least see a horizon of all my treatments. I would need to finish my Kadcyla, get a Salpingo-Oophorectomy (this was an option, but in my case best case scenario to keep cancer from returning) start an aromatase inhibitor (hormone blocker), and start getting Zometa eventually. (a drug to strengthen my bones and keep cancer from metastasizing to them)
Today, almost 3 years after my diagnosis, I am on an aromatase inhibitor, I manage Lymphedema (due to lymph node removal), have a lot of follow-ups with my oncologist and other care teams for side effects and monitoring, and I get a Zometa infusion twice annually. I finished Kadcyla in March of 2022 and was told that I was finally at a stage where I was considered “NED.” (no evidence of disease) I have had a lot of side effects and struggles due to all the treatment that I have endured. I have not yet gotten reconstruction but have not completely tabled it yet. I have struggled with my eligibility for reconstruction and I am at peace with not having it currently. At the end of the day though, even when I have rough ones, I am extremely thankful to just be here. Each day really does feel like a gift as it is one more day that I get to spend with all the things and people I love. I am getting to watch my little boys grow into men, they are now 13 & 15, and that is something just 3 years ago I was not sure I would be able to do. So, there is hope….
Inflammatory Breast Cancer research is severely underfunded. While Breast Cancer research receives billions of dollars, IBC research is almost non-existent in comparison. This is where I use my story to ask for your help. IBC Network Foundation funds various research programs for Inflammatory Breast Cancer and is my best chance to make this hope grow.
Through research hopefully we can create a diagnostic test specifically for Inflammatory Breast Cancer, putting an end to a misdiagnosis that leads to many people progressing to Stage 4 before diagnosis.
Through research more treatments specific to IBC can be found, which may just save my life should IBC come back. (IBC & Triple Negative Breast Cancer are more likely to come back & spread, and they are harder to treat effectively)
Through IBC research we can give hope to people like me. Please consider donating in my honor to the IBC NetworkFoundation so that we can work to create more effective treatments and diagnoses for those who will face this terrible rare disease.
Thank you – Rachel Ford