Finding out I have the "big C"

In case you're wondering how in the world I figured out something was wrong

I’m going to outline my experience thus far in seemingly excruciating detail (be warned, this post is long). I had never heard of IBC until early November 2017, and I think it’s important to offer my experience as a humble opportunity to help spread the message about IBC. Please take the time to read this and share it. Not all breast cancers start with a lump and I can only hope to draw some more attention to this disease which is very much in need of more research.

Now, for my experience.

Where it all began...

Starting in July 2017, I noticed that my right breast was itching and seemed to itch more than my left. I didn’t notice any other changes and simply chalked it up to dry skin or eczema or sweat drying (you know, summer in the Netherlands without AC does have a few hot moments). With my ongoing move back to the US from living abroad, I didn’t think much of a little itchy skin. In mid-to-late October, however, I suddenly had a whole host of symptoms in my right breast. The itching had intensified, my breast was swollen and felt heavy (noticeable difference in size between my two breasts), the skin was red and hot to the touch, and I started to feel changes in the skin on the areola. I also felt a firmness in my right breast that I had never felt and which I was worried might be a lump.

Sidebar: Going through this process made me realize that women are encouraged to check for lumps on a monthly basis, but does anyone actually really know what a lump is supposed to feel like? I sure as hell didn't!

Concerned about my symptoms, I arranged an appointment in short order with a Nurse Practitioner at a General Practitioner’s office on 10/23/2017. The Nurse Practitioner conducted a breast exam and concluded that the firmness I felt was not a lump. To be safe, she drew blood to check my hormone levels and provided me with a prescription to have an ultrasound of my breasts done. I was obviously relieved when she said I didn’t have a lump. Additionally, the doctor’s office called back within a couple of days to let me know that the blood work on my hormone levels came back normal. While I was reassured by these results, the symptoms were not dissipating, so I scheduled the prescribed ultrasound for Friday, 11/03/2017.

During the ultrasound, the Radiologist confirmed to me that I wasn’t going crazy since “something” was going on in my right breast. She, however, believed that it was likely to be an infection that would be resolved with a course of antibiotics. She recommended that I contact the doctor’s office immediately, get a prescription for antibiotics, and return for an ultrasound in four weeks’ time to confirm that everything had cleared out. She also mentioned that if the antibiotics did not resolve my symptoms, then there might be the possibility it could be IBC. I’m fortunate and will be forever grateful that she mentioned the possibility of IBC when she did because it set me off down a parallel course of action.

Learning about IBC and getting diagnosed

While I did begin the course of antibiotics immediately on 11/04/2017, I also started to look into IBC. After doing some initial research on IBC and seeing the similarities between my symptoms and those associated with IBC, I reached out to my sister for guidance. Again, I’m so fortunate – there are not many who have a physician in the family who can help guide them.

On 11/06/2017, I had a follow-up visit with the same Nurse Practitioner who had conducted my initial breast exam during which I pushed for a biopsy. The Nurse Practitioner disagreed and suggested that I complete the course of antibiotics before pursuing further diagnostic work. While the Nurse Practitioner eventually provided contact information for a breast specialist, it was evident that I would need to advocate for myself.

My sister, however, was able to contact a different breast specialist through her network. This breast specialist insisted that I get a biopsy done as soon as possible. In his own words, "it's IBC until proven otherwise."

I went to a breast imaging center on Wednesday, 11/08/2017 where I received a mammogram, ultrasound and 2 biopsies. The following day Thursday, 11/09/2017, the Breast Surgeon confirmed that the biopsies were positive for cancerous cells and that based on my symptoms, my clinical diagnosis would be for IBC. She immediately conducted an additional biopsy on the spot. More importantly, I was informed that the treatment course for IBC includes all of the following: chemotherapy, surgery (mastectomy), and radiation.

I then met with a Medical Oncologist on Friday, 11/10/2017, at which point in time, I had decided to transfer my care to MD Anderson Cancer Center in Houston, TX. I contacted MD Anderson on the same day and was able to get in for the first of many appointments to come beginning Tuesday, 11/14/2017.

Let me stop here for the time being. Are you out of breath yet at the breakneck speed of things happening? This experience has been even more of a whirlwind than I can possibly capture, but also one that’s tried my patience. I am ready to fight this thing and hate having to wait for the additional diagnostic work to determine the biomarkers on my cancer, find out if it's spread, make decisions about my future fertility desires (because of course chemo impacts egg viability) and more. But it’s critical to ensuring I have the right treatment protocols, so here I wait with baited breath.