We all try to put things in context, to terms and things we can relate to in our lives. This makes sense, we learn in school of course, but so much we learn through experience. When someone you know says “I have breast cancer” it’s very normal, and subconscious to go through your memory of anyone you knew who had breast cancer and try to relate it. Then you might offer advice, or say my [memory person] who had breast cancer has survived/died/etc. This helps you, but it likely does not help the person who shared their illness with you. Forget all the emotional reasons, those are covered really well by so many others (ask and I’ll post some links) this is about the base reasons.
Cancer is not a single disease. Breast cancer is not a single disease. Unless your personal point of reference had the same type, subtype, stage, is the same age, same base health, etc then it’s about as useful as saying I know a person who was abducted by aliens.
There are 9 primary types of breast cancer – ductal carcinoma in-situ (DCIS), lobular carcinoma in situ (LCIS), infiltrating ducatal carcinoma (IDC), medullary carcinoma, infiltrating lobular carcinoma (ILC), tubular carcinoma, mucinous carcinmoa, paget’s disease and inflammatory breast cancer (IBC).
Along with the types of cancer, there are things that hormones that might feed the cancer. A cancer can be receptive to any, all or none of these estrogen (ER), progesterone (PR) and human epidermal growth factor receptor 2 (HER2). Someone with all three is triple positive, someone with none is triple negative. Within triple negative there are 6 known subtypes. Two of these are BRCA1 and BRCA2 where someone has a mutated form of either of these cancer suppressing genes. The other 4 types are only studied in labs so far. There are no targeted therapies for triple negative.
Along with the above, there is also stage and grade reflecting things like size of tumor, state of margins, spread to nodes, spread to other body parts.
Each of the above can be put into a multidimensional object and each little square has it’s own treatment options and it’s own prognosis. And even within those “stats” there are outliers too, those who are not close to the average.
Making it more complex, science has now found that some tumors have other mutated gene expressions, some of which have unconventional treatment (diabetes medication, blood pressure medication and others). This is a new field of study and even though they find mutations in most tested, there are currently no known treatments for most. But these findings point to adding another set of dimensions to add to it all in determining treatment and outcome. In Canada the current trial of this is called The Personalize OncoGenomics (POG) study. I might get into it, but we need to see my next scan since it requires fresh tumors. It’s still new and not many have been sequenced (it’s still a trial)
If someone tells me that someone they know (or heard of) someone who “cured” their cancer by [x] then it’s not of use to me unless I know what tiny little square it’s in and how that compares to mine. Some treatments that help one square can actually cause growth in one of the other little squares.
Your square is recorded as the one you are first diagnosed in, but it can change, sometimes after surgery (and more testing) and sometimes because it spreads or mutates and then it gets even more complicated.
Yes it’s all breast cancer, but it’s not all the same.
Welcome to my new and shiny blog. I have great plans for this blog, many of which will probably never happen. At the very least though, it will be working through my thoughts, feelings and life as navigate the world of Metastatic Breast Cancer (MBC).
You’re probably wondering about the name, or maybe not, but I’m going to tell you anyway. Since my original cancer diagnosis in May 2015, I have had people coming out the woodwork telling me everything they know about cancer, people they know with who had cancer (some dead), how to cure cancer, how to not cure cancer, how to eat and well, you get idea. Except for those who are peddling “cures for cash” most mean well. The problem is that there not all they share is true. There is some truth, but it’s mixed in with lies. I doubt my friends are misleading to me intentionally, but somewhere along the way, it became a lie. So for every piece of information and advice, I have to sift through, follow up and research. Along the way it started to feel like the game of “Two Truths and a Lie”, the cancer version. And a blog name was born.
Sorry for a boring first post. I can’t promise it will all be exciting. I can’t promise much of anything except to try my best.