Day 28 #LivingWithLobular

I reached out to Colleen having read a post from her on a US Lobular Breast Cancer FB page. I know that she is a fantastic Advocate for ILC and I felt that many of us could learn from her experience. I’m very grateful to Colleen for agreeing to help Lobular Ireland raise awareness and improve education about Metastatic Invasive Lobular Breast Cancer in particular and having Dense Breasts.

Colleen Packer

I was diagnosed with “de novo” bilateral metastatic lobular breast cancer just over 3 years ago at age 45 (de novo meaning I didn’t have early stage breast cancer that returned, I was metastatic right from my initial diagnosis). Honestly, I felt blindsided. I didn’t actually have any symptoms at first – at least nothing you would pick up on from how breast cancer is portrayed in the movies and on TV. A few years before my diagnosis, I felt really run down but I thought I was burnt out. Very burnt out. When I went to my doctor, she had me do bloodwork and told me to take vitamin D supplements. Cancer wasn’t on either of our radars and there wasn’t anything to suggest I should get a mammogram or any other kind of screening.

A year or more later, still feeling burnt out, I noticed some dimpling in my left breast, but had no idea that was a red flag and so I did nothing. But that quickly turned to thickening, which quickly turned to pain, which I knew was definitely not burnout. This time when I went to my doctor, she moved at the speed of light and I was immediately sent for a diagnostic mammogram, which found… nothing! Fortunately, my doctor had also ordered a diagnostic ultrasound, which also found… nothing!!! Except, “Wait. You didn’t say anything about your right breast,” said the ultrasound tech. “That’s because there’s nothing wrong with my right breast,” I said. 

Turns out, the ultrasound was picking up cancer in my lymph nodes. Thanks to my dense breasts, they still couldn’t see anything in either breast but biopsies confirmed lobular breast cancer in both. Subsequent CT and Bone Scans revealed innumerable mets throughout my sternum, clavicle, spine and pelvis. And yet, not a lump to be found anywhere. 

When I was first diagnosed, I beat myself up for a long time, wondering what signs I had missed. Asking myself what if I had pushed for a mammogram sooner? Could it have been caught when it was still early stage? It wasn’t until I learned about how sneaky lobular can be and how dense breasts make imaging so difficult that I was finally able to let go of the guilt. 

Something else I didn’t realize before my diagnosis was that once you have metastatic breast cancer, treatment never ends! Most days, I have at least 3 drugs coursing through my body, sometimes more. Plus medications to help with side effects. I’m a walking pharmacy!!! None of this will cure me. The goal is to slow progression and improve quality of life. Eventually, my cancer will become resistant to the medications and I will have to change treatment. However treatment options are not unlimited and each one tends to be a little harder. 

I’m very lucky to still be stable on my first line for over 3 years! I’m hoping for many more so that research has time to catch up with treatment for metastatic lobular breast cancer. Until then, I will continue to do what I can to educate family and friends and anyone else that will listen that it’s not always a lump and that there’s so much more that people need to know about breast cancer than what you see in the media. 


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