WHAT IT'S LIKE to be in a high risk breast screening program

Several years ago, my aunt?was diagnosed with breast cancer and was treated at St Mike's hospital in Toronto. Years after that my mother in law was diagnosed with breast cancer for the second time in her life, and was also treated at St Mike's. After that, my mom was diagnosed with precancerous cells and had a couple of lumpectomies over the course of the next several years, along with radiation. I am so happy to report that they are all breast cancer survivors. While they all bear the scars, both emotional and physical, they are living a life full of love, thriving with friends, family and loved ones. As one of my aunts said to me recently about our family history, “we have boob issues”.?

Those that know me well know that I'm a planner. I don't like surprises, haunted houses, jump scares are my worst enemies, and I absolutely detest it when people put their hands on the top of my head (luckily I'm tall and have cat-like reflexes). So, it should come as no surprise that given my maternal history and incessant need to know, I had my first mammogram at 35, and advocated like heck for myself to be part of a high risk breast cancer screening program at a nearby hospital.?

There's no other way to say it other than mammograms suck. I will spare you the details of what it's like to have a mammogram, but all you ladies out there who have had one before know what I mean. If you don't know, perhaps it feels similar to when your hand gets caught on a closing door. Stings for just a bit, but enough that you don't want it to happen again. But unfortunately, when you are in a high risk program, or a woman over a certain age, you don't really have the luxury of choice. I now have mammograms and MRI’s every 6 months.?

My first mammogram was nerve wracking, but thankfully the medical team are used to people like me - nervous but willing to put their health first. The process is pretty quick, you check in, put on the robe, wait for your turn to get squished, and then leave. Best case scenario, you get a call in a few days and you get the “all clear, see you next time”. Unfortunately, that didn’t happen for me. I received a call and heard “Mrs. Khan, it's so and so from the hospital. We’d like you to come in to do some more imaging”. Tun dun dun….. Why? What? How? Oh how your brain can quickly jump to worst case scenarios. You plan for all the “what ifs” that nobody wants to have to think about.?

So I return for my follow up appointment and the technician asks “so, what brings you back?”. Like WTF? You tell me. Then she reads my chart and says "yes, ok, I have to take some scans of the right side". Ok great. When I ask why, she says "well, I'm not really sure. There are some abnormal spots that could be calcification (normal) or it could be something much worse. We just don't know yet". Yeah, that helps. Now I'm somewhere between "normal" and somewhere I really don't want to be.?

A week later, they called me and asked for me to return to do a biopsy for more information. Ok, here goes my brain again, but yes, I will do it because I need to know and clearly there is something of interest to them. Getting a biopsy is somewhere between getting your hand caught in the door and slamming that soft part of your knee on the corner of a table. Both inconvenient, but doable.?

Results are "abnormal cells" that need to be monitored and are benign. So one clip, 2 biopsies, and a medical mix up where the radiologist read my scans upside down and I found myself questioning ALL doctors, I'm back again at the hospital in the waiting room enduring a 2 hour wait for an MRI.?

If you've never had an MRI, it's painless if you exclude the required IV. It's just really loud and cramped in there. It’s like you're at a heavy metal concert that you don't remember buying tickets for. After the test, you wait for the results. Are things the same, or are they worse or different? You hold on to your hat and nervously await the call from your doctor.?

Rinse and repeat every 6 months.

The Canadian Cancer Society reports that "Breast cancer is the most common cancer among Canadian women (excluding non melanoma skin cancers). It is the second leading cause of death from cancer in Canadian women....

It is estimated that in 2021:

• 27,700 Canadian women will be diagnosed with breast cancer. This represents 25% of all new cancer cases in women in 2021.
• 5,400 Canadian women will die from breast cancer. This represents 13% of all cancer deaths in women in 2021.
• On average, 76 Canadian women will be diagnosed with breast cancer every day.
• On average, 15 Canadian women will die from breast cancer every day.
• 260 Canadian men will be diagnosed with breast cancer and 55 will die from breast cancer.

So why did I want to share? Well, because I arrived at the hospital and they told me that they were running 2 hours behind and all I have with me is my phone. So the choice was between writing this or winning another race in candy crush. But also to remind you (and me) that you never know what someone is going through. For the next couple of weeks the light in my eyes will just be slightly dimmer. My nerves will be a bit more exposed and I will jump ever so slightly when my phone rings. But to most, I will be the same Jen. Loud and proud and most won't have any idea what I'm thinking about, or worse, afraid of. I also wanted to let women know, particularly the one sitting across from me right now in the green coat, that I’m with her. I’m nervous too, but our choices, and the sacrifices that we make today could literally save our lives.?

Be kind to each other. Assume the positive in people. Remember that we are complex beings with complex lives. Being a high risk anything, dealing with any medical, familial, emotional anything can take a toll on anyone at any time, and you simply won't know. In fact, it's none of your business either.

But the next time someone cuts you off, was a little too curt in their response, or maybe didn't laugh as hard? as usual at your jokes, just remember that they might be going through something. Rather than judge, take a deep breath and find a little more empathy and curiousity.

Just be kind and don't be afraid to get squished. ?