At the age of 45 I was diagnosed with stage 2 B invasive ductal carcinoma. I had 4 cancerous tumors and a 4 cm area of DCIS, all undetectable at my annual mammogram. I had felt the lumps in December of 2012 and was shocked when the radiologist sent me the “all clear” letter that same month. At the time, I had 2 young boys ages 5 and 9 and was a busy working mom. I’d sit on the couch at night and my hand would immediately scan the area of the lumps, obsessively, repetitiously feeling them, wondering if I was imagining things. Were they getting bigger? Why were they so painful? And why did my nipple on that side also look strange, as if it was looking off to the side? In my gut, I knew something was wrong, but I kept rationalizing that the mammogram came back clear, so I must be fine, right? Also, I had been a breastfeeding mom and my breasts changed quite a bit. (I have to say, I felt like I no longer knew them and didn’t know what normal was supposed to feel like anymore.)
I couldn’t accept that things were “Ok”, even with the “all clear”. A few months passed and I finally reached out to my ObGyn. She felt the lumps, too and immediately ordered an ultrasound. In the middle of dentist appointments for the kids and rushing around, I got home after 5:30 pm and my phone was ringing. It was my doctor telling me they had found a “suspicious mass”. From there, my life went blurry. Although I was not surprised, I was now living in a state of hysteria.
I first had a lumpectomy, where they discovered the 4 cm area of DCIS outside the margin. My oncologist recommended that I have radiation to destroy this cancer and then suggested some form of reconstruction. At this stage, my breast was half gone (technically he had already given me a partial mastectomy) and after consulting with a radiation oncologist and plastic surgeon, I opted for a double mastectomy. (On a side note, my oncologist at the time tried to discourage me and said, “There is something to be said for the natural state of a woman’s breast”. Yes, he said this to a cancer patient trying to save her life. I didn’t want to make this choice but having 2 aunts on my mom’s side dying from breast cancer and my complete mistrust in mammography, I was super fearful for my other breast. My breast surgeon told me I had a 25% chance of getting it on the other side. The double mastectomy was the only solution for me.
I was not given choices around reconstruction. I was sent on a fast track to implants after expanders. I had 4 rounds of chemo and 7 years of Tamoxifen, due to my cancer being estrogen receptor positive. I lost my hair, I battled with weight gain, depression, anxiety, PTSD and continued fears that this will return. My family also suffered along with me and this is something people don’t often realize, the collateral damage of breast cancer.
The reconstruction was a long and painful process and if I could do things differently now, I would. I wish doctors would be more honest with us and tell us that while we may look normal to the outside world after recon, there will be no feeling except for the constant feeling of having 18 bras strapped around your chest 24/7. Somedays, I wish I could rip them out and just be free but I’m too scared of the next emotional trauma that might bring.
I was dismayed and disappointed (still am), in the medical system and the lack of standard of care around women with dense breasts. At the time, there were no “Dense breast notification acts” pioneered by the late and great Dr. Nancy Cappello shortly after my diagnosis, whereby women are required to be notified of their breast density I many states. I got a hold of my medical records from the years prior to my diagnosis and each letter from the radiologist sent to my doctors stated the same thing:
“Rebecca has extremely dense breasts”
At no point did my doctor pursue further testing for me or educate me around the risks and ramification of having dense breasts (50% of cancerous tumors go undetected in those with dense breasts). Even though many states have the Dense Breast Notification Act, women are still being dismissed and not educated enough about this letter.
We feel like we are climbing an uphill battle, still, after so many years. We should be doing better and we CAN do better. And how can we? It starts with YOU. You have the power to be educated, to speak up and to continue to advocate for yourself because that is the only way YOU will get what YOU need.
I am thankful that I had a doctor who was educated around this topic and actually took it seriously in 2013. I owe my life to her! Thank you, Dr. Manning!
Cancer is awful and I’ve lost so many friends and family members to this disease. I write this with a grateful heart and a passion for educating all men and women because no one ever thinks they will get this disease. But the hard reality is that you likely know someone in your circle who has had it or will have it. Be vigilant when it comes to your health and your breast health! No one will advocate for you more than you can.