Cindy C. Shares Her IBC Experience

To my IBC friends, I hope you get some inspiration from my story. My course was tolerable and uneventful, compared to some stories I have heard. I hope this sends women with new symptoms running to the doctor and demanding IBC screening, as it may greatly affect your outcome. And, I give a huge shout out to the courageous women who did not get prompt diagnosis and are fighting with us today and winning!

November 4, 2017 – I went with my husband and some old friends to an oyster roast. I had not done this in years and it was thoroughly enjoyable. I think I shucked and ate four dozen oysters! A few weeks later my life changed drastically, and I told those same friends, “How I wish I could say it was from the oysters!”

November 7, 2017 – I noticed a round cherry spot the size of a quarter inside my left breast. It felt like there was a small piece of wood in the lower quadrant near my nipple. How on earth did I wake up to such a thing? By the end of the day, my breast was enlarged, veiny, and my nipple slightly inverted.

November 9, 2017 – I saw my gynecologist, who sent me to radiology the next day. It was quite obvious after mammogram and ultrasound that the radiologist was concerned. A punch biopsy was scheduled for the following week with guided ultrasound. It was a horrible experience with doctors talking over me as if I wasn’t there, never telling me anything.

November 16, 2017 – My original diagnosis was Infiltrative Ductal Carcinoma, hormone positive, HER2neu negative. It seemed very doable. I requested a referral to a major medical center and had to be persistent, as it was the week before Thanksgiving.

November 22, 2017 – I saw a highly respected oncology surgeon who I will refer to as Dr. A. My mammogram from nine months ago showed nothing suspicious. My cherry spot was a lighter pink but it was still there. Dr. A wanted to biopsy that spot to rule out Inflammatory Breast Cancer. He told me that, although this is a “no lump required” breast cancer, a percentage of patients have a lump.

November 27, 2017 – The Monday after Thanksgiving, Dr. A called toward the end of the day “to go over my treatment.” The rest was a blur because I learned I had Inflammatory Breast Cancer. I still cannot look out my work window at sunset without remembering that phone call. However, he told me his office would take care of everything I needed to do to start treatment, and they did. He told me he had two other IBC patients who were doing great.

[Note: I ran into my gynecologist a few weeks later and he told me in his entire 40+ year career, he had never seen a case of Inflammatory Breast Cancer.]

November 29, 2017 – The oncology visit felt surreal to be sure. My excellent oncologist, who I refer to as Dr. B, explained what my treatment would include over the next ten years. She told me with confidence that her patients did great on chemo. I walked out feeling more hopeful. I was fortunate within a short amount of time to meet some 10 – 17 year IBC survivors who made that hope seem even more real.

December 14, 2017 – Chemo started one month after diagnosis. Dr. B. was mostly right, that it was not as bad as I expected, but there were moments. Gastric pain, diarrhea, constipation, thrush, malaise, ridges in fingernails, shortness of breath. Have you ever had someone pray for your constipation to end? Well, I have. After my fourth chemo, Dr. A did a vascular ultrasound of my breast and axilla. The tumor was gone and nothing showed up in lymph nodes! I had two more rounds of chemo. I felt strongly about bilateral mastectomy due to my history of fibrocystic disease and many repeat mammograms.

May 11, 2018 – The mastectomy was not a bad experience. The pathology report came back a few days later, which revealed 5mm metastasis to one lymph node. The tumor was completely resolved. There was extensive involvement to the dermal lymphatics covering 11mm. Pathology reports scare me, but I finally accepted I had to trust my physicians’ interpretations and not get too caught up in pathology talk.

June 26, 2018 – I found radiation to be intimidating with all those pictures, holding my breath, and the staff calling out numbers to each other. My treatment included bolus for 15 sessions and booster at the end. They told me to relax, that they had to match the radiation within a hair of the mold that was provided for me. They became my friends, even gave me a cake on my birthday!

From the day I found that cherry spot, I am reaching three years cancer free. I will probably never go to the Varnam Oyster Roast near Holden Beach, NC, again, but I encourage others to. Life is beautiful in many ways. I have more to tell but will stop for now. Look for my article on Diep Flap Reconstruction.