I spent some time writing a full blog post on this issue, which you can read here. Scanxiety is a real thing and it arises when the worst thing that’s ever happened to you came about because of a scan and could happen again, after another scan. It’s about knowing what could happen and knowing it could happen again. If you know someone who is having a scan, realize that the emotions are entirely overwhelming. That person isn’t ok and needs help despite how much of a brave face they are showing to the world.
I was pretty excited when I graduated to 6 month scans in early 2019 after a stable year of being on Ibrance. Excited because that meant I was doing well and didn’t have to deal with the scanxiety every 3 months. I learned to hold my breath and only plan for the time between scans. I could plan for longer periods of time and I started to think about relaxing.
The continuous upheaval of dealing with cancer is not easy to explain to anyone who doesn’t live it. Scans and doctors appointments are NEVER routine and always pull the patient and the family right back to the worst time we have ever lived.
Next time you hear that someone living with Stage IV metastatic breast cancer is undergoing a scan, give them a hug, cook them dinner, send them flowers, do something nice.
This is also where the art and science of medicine comes in. I’ve learned to tell my doctor all of my symptoms, whether or not I think they are important. For my most recent progression, I had no new physical symptoms, but the sneaky bastards were proliferating merrily. This is why my doctor scans me regularly and she doesn’t ever relax.
In 2018, I went to the San Antonio Breast Cancer Symposium for the first time. It was overwhelming and I felt in over my head at many of the lectures. One statistic stuck out like a sore thumb …. lung cancer has been the leading cause of death by cancer in women for many years. In 2018, breast cancer surpassed lung cancer as the leading cause of death by cancer for women. Clearly, that was not a positive statistic.
I was 38 when I was diagnosed. 38. I was tandem breastfeeding my boys when I felt the lump. By the time I felt it, I had Mets in all my bones … every single bone was full of lesions. Yes, we know now that we have a germline mutation in my family. ATM is similar to BRCA but carries a lot more predispositions to other cancer like prostate, ovarian, etc.
I had my very first mammogram as we were trying to figure out what was going on.
My very first mammogram.
We have to do better for everyone. The significance of the aggressiveness of breast cancer diagnosed in young women is not something to gloss over. My friends, many of them younger than I, are dying every day.
We need to solve the riddle/puzzle/problem that is metastatic breast cancer. I will be a casualty. One day, all of you dear readers will wake up to the announcement of my death. We need a cure and funds to go to research rather than awareness. We are literally #dyingforacure.
Men do get breast cancer. The men active in social media remind me, when I start to rail against the “awareness” campaigns, that they do still need awareness. Most people don’t understand that because men have mammary glands, while not usually as developed as women’s mammary glands, they can develop cancer in the same ducts.
Metastatic breast cancer, affecting both men and women, needs more awareness. Awareness that we are all #dyingforacure, together.
Out of the entire month of Breast cancer awareness, those of us who are Stage IV get one day. ONE.FREAKING.DAY.
Someone was having a laugh at our expense when we were assigned the 13th day of the month. Most people are so superstitious about the 13th that most buildings don’t have a 13th floor. And don’t get me started on all the superstitions that surround Friday the 13th.
In my darker moments, I wonder if this assignment was on purpose, to further stigmatize those of us who are the elephants in the room. No one wants to be like us, dying. No one wants to bear the side effucks and the constant surveillance and constant medication regimens, not to mention having a front row seat to our friends dying, daily, while dealing with survivor’s guilt and the knowledge that there, but for the grace of God, go I.
The narrative needs to shift, we need to push the needle … or whatever euphemism you prefer. Metastatic breast cancer, stage IV, is the only stage that murders each person who receives the diagnosis. It is 100% fatal.
We are literally #dyingforacure.
There is controversy about how to figure out which research studies are actually focused on metastatic patients. I’ve read the titles of research studies that contained the word “metastatic,” but once you look at the purpose of the study, it is clearly not for stage IV patients. Reading research studies and discovering that the title was not reflective of what actually was being looked at is INFURIATING.
We metastatic people make up 30-40% of people living with breast cancer.
Why don’t we get a commensurate amount of research?
I’ve also heard the argument that research should be like triage, focusing on the patients worse off first. It absolutely feels like we’re all issued our black toe tags at diagnosis.
Not dead yet over here.