Four days later, as my boob was black and blue turning yellow/pea green, I got a call from my doctor’s office to come see him first thing Monday morning. First time ever a request to come in, and knowing they don’t give bad news over the phone, I knew without being told.
It was a Saturday afternoon. My doctor, knowing me, called himself at 4pm on Saturday and based on our long history together gave me the news over the phone. Invasive Lobular Carcinoma. Knowing me, he said, he knew I’d turn up Monday morning having done lots of research and with a list of questions. He does know me well.
That was 4pm on a beautiful Saturday afternoon. Gorgeous sunshine. I’d been to Boot Camp class in the morning and the local organic farmer’s market in the afternoon, met friends for lunch. A typical Saturday. That all changed at 4pm.
I can say, looking back, that it was like an out of body experience. It didn’t really hit me right away – that came over the next few days, and truth be told still feels like it’s settling in. I’ve never been someone who feels sorry for myself, so wallowing was not really my thing. I don’t remember crying – a couple of hours on that day are a bit foggy.
But I did order bacon pizza. I never eat bacon pizza, but it seemed like good comfort food at the time. I am a vegetarian, except for bacon – which I consider my favourite vegetable. I gave up meat over 20 years ago for dietary, not moral, reasons. But bacon is so awesome, I still indulge a couple of times a year. Bacon pizza seemed ideal. I ate half of it, and felt awful the next day. It sure felt good at the time, though.
On Sunday, I started my research, using the criteria in my previous post. I had a long list of questions ready for Monday morning.
Friends Don’t Let Friends Go Alone
Experts tell you to take someone with you to your doctor meeting. It’s different for everyone, as we all process news/information in our own way. I have a background in communications (including a degree in journalism), usability and project management (PMP), so I’m trained in listening. But even with all that skill and knowledge, I knew I’d need an extra pair of ears going forward. No matter what you think about your state of mind, know that you’re still in shock to some degree. If you have access to a friend who can go with you to take notes, I highly recommend it. And, for some, a friend might be the better choice over a family member – that family member is also in shock.
A useful tool I’ve used in my project management career is to conclude meetings with “this is what I heard …” and repeat in my own words a summary of what has been shared and the next steps. This has also worked well for me with all my medical appointments so far. I have an amazing network of friends who take turns going with me to appointments as my extra set of ears. (I’m an only child of two only children. My mother died a few years ago and my father lives across the country from me, so my friends are my family.)
Invasive Lobular Carcinoma
So now I have breast cancer. But not just any type of breast cancer. Nope – I got the kind that, of the 10 in 100 women who get breast cancer, one in those 10 gets what I got, Invasive Lobular Carcinoma. I didn’t even know what a lobule was (it’s where milk is created, then sent down the ducts). Most women – the 9 out of 10 – get ductal cancer. Invasive Lobular Carcinoma is the second most common form of breast cancer, so there is sufficient research available to understand the disease, the course of treatment and other options.
Stages and Grades
One of the things I learned to do was read my pathology report. It turns out that cancer is about stages and grades. Unlike your school tests where the higher you scored the better, on your pathology report in stage and grade you want to see a low number. Stage one is better than stage 3. I learned that my Mitosis score was really important – mitosis is how fast those nasty little cells are dividing – the lower your score, the slower the tumour is growing.
There are several sources that can explain this in great detail in plain English. For anyone wanting to understand the unique language that the cancer community uses to describe conditions and prognosis, including pathology reports, it’s a good idea to get familiar with stages and grades. It’s your stage and grade that contribute to decisions made about your course of care.
- Canadian Cancer Society
- National Cancer Institute
- Memorial Sloane Kettering Cancer Center
- BC Cancer Agency