A Personal Message on Dense Breasts
By: Amy Charney
On November 2014 at age 46, I went dress shopping with my then 13 year old daughter to find a dress for her bat mitzvah. We strolled into the gap for her to try on a few bras. I ended up trying one on too and I glanced down at my breast and noticed a visible tiny pea sized "lump" and gasped out loud. To this day, my daughter said she doesn't remember the gasp! Good job, mom!
"Hmph", I thought to myself. "That's odd, but surely not breast cancer because there is no family history, I am super healthy, run marathons, eat well and who has a lump that is visible?" Later that night, I showed my husband my lump and he when he felt it - not only did he gasp but he jumped backwards as if to say "what the heck is that?"
Anyway, pretty confident that it wasn't cancer, I called my doctor and went in for a visit. She felt it and said it felt "superficial" - not exactly sure what that means, but it sounded good! However, she also noticed that my annual screening mammogram was due in about 3 weeks or so, but she said, let's just schedule it next week to be sure.
Note: I had started my annual screenings at age 40 and had about 2 years of mammograms that went every 6 months due to some calcifications they saw at my very first mammogram. After about 2 years or so, I was back on the annual screening due to the fact that the radiologist determined they weren’t changing.
So, I went in the following week for my mammogram. After the mammogram, they called me back and said, "Everything looks fine on your mammogram, but since you have a lump - let's do an ultrasound." Okay - so now I am feeling a little more nervous, but still confident that things would be okay. And that's when the radiologist spent all of 2 minutes doing the ultrasound before he walked out and brought in his counterpart to share the news that I would need a biopsy. It was at that moment that my Dark Days began.
The following week I had my biopsy. And I had to wait 3 full days for the results. The longest, scariest days of my life. In hindsight, I learned that sometimes the “not knowing” is harder than knowing, but at that time, my mind raced to all kinds of scenarios. I am a mom to three beautiful daughters - who at the time were 13, 11 and 7.
After spending those 3 days in fetal position waiting, I finally got the call on a Friday afternoon at about 3:00 pm. Indeed it was breast cancer. Initially, it was DCIS, a very early (sometimes considered Stage 0) breast cancer. However, there was a "BUT." Since I presented with a lump and had extremely dense breasts they needed to do additional testing to confirm it wasn’t “invasive.” Again, this point - I had no idea what invasive meant, but it didn’t sound good.
Over the next few weeks I had an MRI which showed more “enhancements.” Again - I didn’t know what that meant. So, I had a biopsy in my left breast (presumably the good one) and eventually an MRI guided biopsy on the right (the bad side). This showed something benign in the left (phew!) but MORE DCIS on the right. I was now told that instead of having a lumpectomy and radiation, I would now need a mastectomy on that side as whatever was there was too large for a lumpectomy. And all the while, there was always this talk about “there might be more invasive cancer.”
Finally on January 13, 2015 - a full 10 or so weeks after finding a lump which included at least 3 biopsies, 2-3 ultrasounds, 2 MRIs and a WHOLE LOT OF ANXIETY - I went in for the mastectomy which also included the sentinel node biopsy to see if any cancer had spread to my lymph nodes. About one week later, I got my results and it was good news/bad news. Good news being that the cancer had NOT spread to my lymph nodes, but bad news was - they were right - there was an invasive form of breast cancer that was very small but did require chemotherapy.
As it turned out, while I was waiting to heal from the surgery in order to start my chemotherapy, I received a call from my oncologist letting me know of a clinical trial that I could potentially participate in. I would be randomized to either the standard of care treatment or the new drug which was supposed to be less toxic to the patient but just as effective. So I opted in and got randomized to the test drug - called TDM1 - which was being used already with Stage 4 HER2+ breast cancer with great results. So I spent the next year (March 2015-Feb 2016) going to the cancer center every 3 weeks (17 times in total) to receive this chemotherapy. For me this chemo was very manageable and I was able to run the Boston Marathon after 3 of my treatments! I became a poster child at my cancer center for clinical trials.
There is a whole lot more to the story, but in short, I am still here 7 years after my very last treatment and almost 9 years after finding the lump that day. Do I still worry about a recurrence in my other breast? YES! Do I worry about getting metastatic breast cancer? YES! But it’s not a debilitating worry - it’s just always there.
The main part of my story that I still find hard to understand is that when I went in the very first time with my lump for my mammogram - the fact that “all looked fine” when there was actually about 8cm of DCIS is quite alarming to me. I believe we have to do more for women with dense breast tissue. I now understand more about how difficult it is to see anything on a mammogram with dense breasts. Perhaps the 3D mammogram is better (I did not have that at that time). And I know that because I was considered low risk, I never would have qualified for further diagnostics after a normal mammogram. Had that visible lump not reared itself on that day shopping with my daughter, I may have gone in as scheduled about 3 weeks later, for my routine scheduled screening and walked out again with a paper that said “your mammogram is normal, HOWEVER because you have dense breasts we may not be able to see abnormalities, such as cancer” and I would have gone home with the good news as I had the previous 6 or so mammograms I had. Was the cancer there all along? Was that the “calcifications” they saw early on? I don’t know. But I do feel grateful that it was found, however, what do others do when they have dense breasts and no family history and no lump? I don’t know the answers to these questions, but I hope my story can give some awareness to others.
