Those are words I hoped I would never hear. Really.
Toward the end of March, I found a lump. At first, I thought it was nothing. I have always had dense breast tissue, somewhat lumpy. No one ever really tells you how to do the breast self-exams, do they? You just kind of feel around on them every month (or every two months now, the experts say) and see if anything feels different or off. I had just finished reading Joan Lunden’s book, “Had I Known”, so I thought I was being a little paranoid. But it was her book that prompted me to feel for lumps while I was lying on my bed watching Netflix. Things were shutting down everywhere because of the coronavirus pandemic, so like the rest of America, I was binge-watching this and that.
The month prior, I had started on an exercise kick, hoping to get past the fatigue and feelings of unwellness I’d had over the winter. I had dealt with severe shoulder pain and nausea. Over the past year, my weight had dropped by nearly 40 lbs (at that point…more now). I thought I’d find the silver lining — hey, I weigh less, so I should be able to run. To motivate myself further, I signed up for the Frederick Running Festival and started preparing for the 5K. I joined my local gym and paid for training sessions. I was doing well, but I was exhausted. I was hoping the exercise would help.
I began to push myself more. I did 37+ miles in February. In March, the gyms closed because of the virus. I tried doing training sessions at home, over Zoom, and with videos. One of the really simply yoga poses sent me into an attacks of the dizzies, with a racing heart. Because I have other health conditions (such as postural orthostatic tachycardia), I figured maybe I just needed some more salt. I grabbed a handful of nuts and a Gatorade. The palpitations lasted about an hour. I still was having some issues with body temperature regulation, which started over the winter, too. I would either be freezing (wearing a hoodie and blanket, with a space heater going at my desk) or sweltering, hair dripping and face melting. I just didn’t feel well, but after hearing from my doctors (I saw 4 of them last year because of unintended weight loss and nausea) that I was fine, I tried to just push through it. (Doctors don’t seem to care about unintended weight loss if you’re overweight, but they should! It’s still a worrisome sign!)
When I found the lump, it was a Sunday evening. I tried to keep watching the show I was on, but my hand kept going back to the lump. I finally just went to bed. I thought, “If I still feel it in the morning in the shower, I’ll call my gynecologist.” Really, I didn’t think he would want me to come in, given the virus concerns.
It was still there in the morning. I called the doctor’s office after all my a.m. meetings and told the nurse about the lump. She said, “What does the lump feel like? Is it rubbery? How big? Like the size of a pea?”
I said, “No, more like a ping-pong ball.”
Silence. Then, “The doctor can see you today at 3:00.”
My doctor is a cool guy. He came in with a smile and a handshake. We exchanged pleasantries. I was in my paper gown. I said, “I’m only here so you can tell me that I have nothing to worry about!”
He extended the table and had me lay back. He started with the breast that didn’t have a lump. It was pliable. No lumps. Then he came over to the right side. Almost immediately, his hand stopped. He palpated the lump and started dictating to his nurse. “There is a mass, approximately 3 cm, at 9 o’clock, 4 cm from the nipple.” I felt my heart begin to pound in my chest.
After I sat up, he said, “You know what’s next. We’ll do a diagnostic mammogram, just of this breast, to see what the mass is.”
Because of Joan Lunden’s book, I knew to ask, “What about an ultrasound? I have dense breasts.”
He agreed that an ultrasound was a good idea but that the radiologist would decide if I needed one. The nurse set up an appointment for that Friday to do the additional tests. I kept telling myself it was nothing, that lumpiness comes with having breasts, but I still felt a knot in my stomach. What if it wasn’t nothing?
On Friday, April 3rd (coincidentally the 11th anniversary of my daughter’s death – really the worst possible day to deal with this), I had my diagnostic mammogram. The technician took some initial images and then asked me to wait. She came back in about 10 minutes and said the radiologist wanted a couple of more views. Then I went back to the dressing room to wait some more. The technician came back for me and said the radiologist wanted an ultrasound. As she left me with the ultrasound technician, she said, “See you next year!” Her voice was artificially cheerful, so the pitch was a little too high and a little too taut. I think the tone of her voice was the first thing that made me nervous.
As the next technician ran the ultrasound wand over my chest, she asked, “Do you have a history of breast cancer in your family?” I replied that my dad’s sister had it but that genetic testing showed that I don’t have any of the mutations that are associated with breast cancer.
Next, I was shown back to the dressing room to change. The nurse navigator came to get me and walked me to her office. She went over some information and said, “The radiologist sees something that we need to take a better look at.”
I nodded, trying to appear calm. She said, “This is the part where I tell you that most of these lumps are benign.”
I thought it was an odd turn of phrase — “This is the part where I tell you…” Because she was required to say that? Because she knew better? I’m not sure. It definitely raised my blood pressure a few points to know I’d have to have a biopsy. Now, I’ve had needle biopsies of my thyroid gland before, but never of the breast.
The biopsy was scheduled for the following Thursday. I spent the time between appointments re-reading sections of Lunden’s book, trying to draw any conclusions based on how similar her experience was to mine. I’ve heard of other women getting a biopsy immediately after a mammogram or ultrasound detects something suspicious, but I guess because every clinic was running with a smaller staff, they couldn’t do that for me.
I ordered Nancy Brinker’s book “Promise Me” about her sister’s cancer, which was the inspiration for the Susan G. Komen for the Cure foundation.
I devoured any reading material I could get. Friends encouraged me to “stay positive” or tried to say with authority, “These things are always benign.”
But something in me knew it wasn’t. Something in me knew that the weight loss and the feeling of being unwell finally had a basis in fact.
My gynecologist called me the day before the biopsy to make sure I had the appointment to do that. I asked him if he could tell me anything. He said, “It doesn’t appear to be benign, but we need to wait for the biopsy results to say for sure.” My heart dropped. He said, “Be concerned but not fearful.”
My next appointment was with a breast surgeon. We had a telemedicine visit to discuss the biopsy results. My son was sitting in the room with me.
The doctor asked if I had spoken with my gynecologist yet about the biopsy results. I had not. “We’re looking at a breast cancer,” she said. “It is estrogen and progesterone receptor negative, and we’re still waiting for the results of the HER2 test.” She explained a bit about the hormone receptors (which I had already read about). If the HER2 test came back negative, then my cancer would be called triple-negative breast cancer (like what Lunden had). If it was HER2+, then we would treat it with a targeted therapy such as Herceptin.
I ordered a copy of the latest edition of Dr. Susan Love’s Breast Book and started to devour that.
I asked when she would take out the tumor, because I was under the impression that it was always surgery first. Nope. She said it would be chemotherapy, then surgery, and then radiation. The purpose being that she wants to see the tumor shrink before they operate, “which can give a better cosmetic result.” I told her that she can have the boobs, but she said we had plenty of time to talk about that. Meanwhile, she wanted me to get an MRI, because the studies varied on how big the tumor was. She was leaning toward thinking it was smaller than the original estimates, but the MRI would be more precise than mammogram or ultrasound, she said. So I had the MRI.
My next appointment was with the oncologist. At this point, I thought I would just talk about getting the port and getting a start date for chemo. Nope again. The doctor went through my MRI results and told me that the tumor was about 3 times as large as they initially thought. “It’s big,” she said, “and aggressive.” She agreed with my surgeon in that chemo first would be better. My tumor also tested HER2+, so Herceptin is going to be part of the mix (I’ll be on it for a year). After reviewing my medical history and chart, though, and after reading me the part of the report that said I had an enlarged lymph node, she said she wanted more tests: bloodwork, a brain MRI, a PET scan, and an echocardiogram (because Herceptin can affect how well your heart pumps and can even put you into congestive heart failure). Until all of those results were in, chemo wouldn’t proceed, she said.
So now I wait. I’ve had the bloodwork. Some of it was a little off, but not alarmingly so. I’ll have my port put in this coming Wednesday, followed by appointments for the rest of the tests. May 6, I’ll meet with the oncologist again to find out what we will do next. I’m ready to get started and to get this tumor out of my body.
I’m going to update on my progress here instead of Facebook for a couple of reasons. I can expand on my experience here, and I am less likely to get random and unhelpful advice in my blog, because people don’t feel obligated to write something. Don’t get me wrong. I appreciate the concern of my friends and family, but there is no simple answer to this problem, nor is there an easy explanation for why I have it. One woman in a support group I joined said her boyfriend told her that she can cure her cancer with lemons and iodine. I’m not kidding. I told her to ditch the boyfriend! I plan to visit the nutritionist and find ways to get enough protein and healthy nutrients in my diet without going on some crazy kick. I will trust my treatment team and will fight hard. But lemons and iodine??
I’ll write more when I know more. Peace, Jude