Have you ever felt like you were stuck on a roller coaster ride. where you arrive at the end and are expecting to be let off only to be jolted forward and forced to ride again?
Our roller coaster started spinning four years ago when our daughter (Lauren), who was only 32 at the time, was diagnosed with Triple Negative Invasive Ductal Carcinoma (Breast Cancer) on September 24, 2020. After a series of chemo treatments, a bilateral mastectomy, and a few post-operative complications, spanning just over a year – she was declared cancer free! Praise the Lord!
Three weeks ago (May 6, 2024), the roller coaster jolted forward when I found a small painful bump on my right-side breast, close to the armpit. Naturally I was a bit concerned. The day I found this was Stephen’s birthday, and I didn’t want to worry him, so I went to work and had my daughter inspect it for me. Her first thought was, ‘mom I think it is just a bug bite, but to be sure you should call your gynecologist’. Because it was small and painful, the presumption that it might just be a bug bite was reasonable since most internet searches will tell you ‘Breast cancer isn’t painful’. I went ahead and called my gynecologist and made an appointment, which I almost canceled twice before the appointment date arrived. On 13 May, my gynecologist checked the spot and, as a precaution, referred me to get a diagnostic mammogram. The clinic she referred me to was not one I had used before.
Thursday, May 16th I had the diagnostic mammogram and ultrasound. The facility was really nice, and very different from what I had experienced previously. I was escorted to a private room, where I was given a soft, comfortable robe (not the typical medical gown). Everyone at the facility, from the receptionist to the Radiology doctor, was very personable and comforting. After my ultrasound, the radiology doctor came in to tell me that the area that I came in for is fine, however, sometimes God has us come in for something that turns out to be nothing so that we find the something that is. Honestly, everything she said after this was a blur. I know that she said we needed to do a biopsy, and she was saying a prayer that it could be one of a few other things (cannot for the life of me remember what they were) but she did not feel it would turn out that way. My nurse navigator came in and said they had an opening for a biopsy the same day, if I would be interested. Um, yes please! I waited two days for this appointment and did not want to wait any longer than necessary for the biopsy. Interestingly, she presented a consent form for me to sign stating I was not being coerced to have the biopsy that day. The nurse also asked me if I had a surgeon in mind, and if so, what was their name? I was already texting Lauren and asking for her surgeon info at this point. The Nurse navigator told me I probably would not have the results until Monday, since it was Thursday, as it can take up to two days for the results to come back. In my mind, I am thinking this cannot be real, almost like an out of body experience as we are discussing possibly needing a surgeon and oncologist. I left and headed back to work and planned for one of the longest weekends of my life. I spent that weekend with my kids, got a new tattoo on a whim, and spent time with my grandchildren.
Invasive Lobular Carcinoma (ILC) accounts for only 10% of breast cancer cases in the United States.
ILC doesn’t always present as a mass and is known as the sneaky cancer. It is hard to view on mammograms, and often missed until it is bigger in size and more advanced in stage of development.
The breast center has an online system where you can view your results once they are published. At 11:28 that Monday morning (20 May), my whole life changed as I read the results – Invasive Lobular Carcinoma, ER/PR + and HER-2 negative. It was all very surreal. The radiology doctor called shortly after to read me the results and confirmed that it is indeed breast cancer, and to let me know she was praying for me, and that the nurse navigator would reach out shortly with the next steps. When the nurse called, she stated they had an appointment tentatively scheduled with the breast surgeon for the following Wednesday (22 May) if that day worked for me. I met with the breast surgeon, and she went over what ILC is/means and explained my surgical options - lumpectomy, single mastectomy or bilateral mastectomy. I have opted for a bilateral mastectomy with reconstruction and will meet with the plastic surgeon this Wednesday (29 May). Tuesday (28 May), I will have a chest MRI with contrast, and I am currently awaiting appointment scheduling with my oncologist.
There have been so many phone calls; scheduling doctor visits, scheduling advanced MRI, calling insurance company to find out my deductible and total out of pocket expectations, etc... It truly has been a surreal and exhausting week. I have struggled between overwhelming pressure and emotional adjustment and times when it almost seems like nothing has changed at all.
I will be writing about our journey as we navigate through this next chapter of our lives. It is OUR journey because cancer affects everyone not just the patient.
