About 2 months before Eleanor was born, my midwife noticed a small firm area in my left breast. She made an appointment with a surgeon, as a precaution. I had an ultrasound, and no one reported any abnormalities, but I was told to come back in a month if anything changed. Well, I got a bit distracted with Eleanor and so I skipped that directive. However, instead of going away, the area of firmness increased. It felt to me, to the midwives, to the lactation consultants, to the surgeon like a breastfeeding-related problem, such as a plugged duct. For months I applied heat or ice, took ibuprofen or lecithin, massaged or expressed, but nothing worked. In Feb. 2010 I noticed a redness starting to appear. In to the surgeon I went, and despite my inability to relieve this "breastfeeding" problem I was again sent away. In May, with more and new redness, I again brought myself to the surgeon. He touched the lump briefly with two fingers, told me some surgical things he could do to relieve a plugged duct, actually said that it wasn't cancer, and sent me away. I consulted with the lactation experts again, and they suggested ultrasound therapy to relieve a possible galactocyle. I tried that twice in July, and it did seem to loosen things up for a few days, but the firmness never went away.
Despite weaning Eleanor this summer, my "breastfeeding" problem got worse and I started to get nervous. I dumped my surgeon and made an appointment with a different one in August. My new and wonderful surgeon appropriately puzzled and scowled at my breast. But he had no history with me, so he told me to give it another month to drain of milk and then see him again. He patted my leg and promised to help me get to the bottom of this. That follow-up was ~2 weeks ago, and he decided to get another ultrasound to see if anything had changed to suddenly allow us to see the problem. That ultrasound was Tue. Oct. 19th. I actually got to talk to the radiologist, and this conversation made everything clear for me. Although I had long thought that I could see a difference between the ultrasound of my left and right breast (I must have had 4 ultrasounds on it by now), the radiologist said, "yea, but there's no focal point". I interpreted this as meaning that although he agreed that my left breast didn't look normal on ultrasound there was no focal point for him to diagnose or tell the surgeon to biopsy. How long has this been going on? How long has my breast looked abnormal on ultrasound but without a focal point to diagnose? And now that I know that it's inflammatory breast cancer, what does THAT look like on ultrasound? Why weren't other, more appropriate tests used to rule this out? But I digress...
The radiologist called my surgeon, who decided to do a quick mammogram and see that result. After the mammogram was my appointment with my surgeon. He said that there were some calcifications in my left breast according to the mammogram, but he was still puzzling at the problem because there were no clear answers (apparently). I asked him what we should do. He said if I was his sister, he would do a biopsy. So that's what we did. I directed him to the one spot that I consider to be the focal point because it is near where it all started and it is a tiny bit sore when pushed. He took out two--pieces? chunks? samples? Four stitches later, he and the nurse told me the tissue looked great, and let's have a follow-up on Thursday to discuss the pathology results.
Now it's Wednesday, and we're all living our normal lives. At 1:30 my surgeon's nurse calls and says that I have inflammatory breast cancer, get a babysitter, and go with my husband (Ian) to the oncologist's office. She's super booked, but wait in the waiting room until she can squeeze me in. We followed those horrifying directions, and eventually spent over an hour with my new oncologist. She is great. She explained what we know, which is that I have inflammatory breast cancer, and what we don't know, which is what receptors it has and if it has spread. She lays out for me the staging that needs to happen to find answers to the things we don't know: brain MRI, breast MRI, bone scan x 2, PET scan, EKG, Echo cardiogram, genetic testing, and lots of blood tests. Some of these are to determine if the cancer has spread, some are to determine if I'm healthy enough for chemotherapy. In our daze, Ian and I walk out to the receptionist to begin making the first of seemingly hundreds of appointments.
Thursday. 7:20 am. My brother arrives with breakfast-making supplies. My sister arrives and walks me to my first appointment. My other sister meets us at the hospital. First stop, blood draw. Second stop, genetic counselor. Third stop, MRI. Fourth stop, second MRI. (in the middle of my first MRI, some electricians discovered a puddle of water in the MRI electrical room. We had to stop the scan, but I already had the contrast dye in me, so the technician walked me to the neighboring clinic to finish up in their machine.) Fifth stop, another blood draw for a test that was requested after I already had the first blood draw. Intermission: home for lunch, at which point my dad shows up with fried cheese curds. Sixth stop, bone density scan. Seventh stop, EKG and Echo. End scene.
I had no tests scheduled for Friday, but I have a few more on Monday and Tuesday. Tuesday is D-day because I meet with the oncologist at 3:30 to summarize the results and come up with a plan. I have no preliminary results to report because I have met with no one except the technicians, although a radiologist did call the house and told me to feel free to call him if I have any questions.
Um, thanks, unnamed radiologist, but you have no idea.