Things I Wish I’d Known When I Was Diagnosed With Breast Cancer 

Introduction:

I’m a planner by nature.

I schedule parties months in advance. I’m always the one to put together the trip itinerary. Ask any of my loved ones, and they’ll immediately poke fun at me for sending a calendar invite for any activity, no matter how casual. 

I can’t help it. It’s part of who I am. 

You can imagine, then, my surprise when something happened in my life that I hadn’t planned for at all – breast cancer. And not only breast cancer,  but breast cancer at twenty-eight years old, with no family history. There are many words to describe the cancer experience, but I’d say “uncertainty” ranks pretty high up there. 

Sometimes I think about the person I was at the moment I was diagnosed – gathering every bit of courage I could muster to charge ahead into the unknown. I had absolutely zero ideas about what to expect. 

So that’s why, nearly four and a half years out from my breast cancer diagnosis, I started to think about what I would go back and tell myself if I had the chance. Obviously, hindsight is 20/20 here; however, for anyone recently diagnosed, navigating the unknowns of the cancer journey, here is what I wish I knew: 

1. Social media will be a blessing and a curse. 

If you’re anything like me, you’ll take to the internet early on to try and understand what’s ahead and to meet like-minded folks who understand what you’re going through. Sometimes it will backfire – you’ll find yourself in the wilds of Facebook, wading through hundreds of posts only to find yourself more bewildered or terrified than you were when you started. 

Sometimes, though, you’ll make connections that are really special. I have a number of beautiful friendships in my life now that are solely due to cancer social media—and I’ll even be in the wedding party of one of those friends next summer. Experiment, try different channels, and see what works for you. And if social media just doesn’t do it for you? That’s OK, too. There are other ways to connect with others who are in the same boat (it’s amazing the conversations you can strike up in the waiting room!). 

2. It is possible to love your body again.

When you first discover you have cancer, particularly at a young age, it can feel like your body let you down. In the months prior to my diagnosis, I had really focused on getting healthy – getting outside, hiking, and even doing a triathlon. Ironically … I felt good. Which just made me even angrier at my body for the betrayal. 

I do not look exactly the way that I used to. I’ve now had five surgeries, including a double mastectomy and a DIEP flap reconstruction (meaning that my breasts were rebuilt from my own tissue). I have scars. A lot of them. And yet, I’ve come to love them. It didn’t happen overnight, and it took time and effort. But when I see my scars in the mirror now, the main emotion that I feel is pride.

3. There will be imperfect choices that you have to make, and that’s OK. 

As a pre-menopausal woman diagnosed with breast cancer, one of the first questions that were asked of me was whether I wanted to have children (despite being nowhere near ready to do so). Because I did want to keep that door open in the future, I quickly began the process of investigating fertility preservation. And that process turned out to be a long, bumpy ride. 

Because my cancer was fast growing – and we didn’t believe that my chemotherapy agent would impact fertility – we decided to move forward with treatment and do fertility preservation right after my final infusion, prior to my mastectomy. 

Had I stopped to think logically for a second, I might have questioned my body’s ability to successfully freeze eggs forty-eight hours after three months of chemotherapy. But everything was happening quickly and the truth is: I had to put on my oxygen mask first, as they say. 

My first attempt at fertility preservation went terribly. Eventually, I tried again and was more successful, after giving my body some time to heal after active treatment. 

But would I go back and do anything differently? Honestly: no. We made the strongest possible decision given the information we had at the time, and often that is the best that you can do.  

4. You don’t need to be a “super survivor” all the time. 

Once you are diagnosed and into survivorship, you will constantly be confronted with “shoulds” things you should do, should eat, should avoid, and sometimes that’s helpful. You can learn about ways to live a healthier lifestyle or help to reduce your risk of progression or recurrence. 

But the truth is that many of us try to survive cancer so that we can live.And sometimes living looks like having a glass of wine and French fries, or sitting on the couch and bingeing a new show on Netflix. That’s OK, too. You don’t have to survive and immediately run an ultramarathon (though know that if you do, you have my utmost respect. That’s awesome.). 

There will be moments where you feel like a “super survivor” and others where you really, really don’t. And that’s normal. 

Those are just a couple of the things I’d go back and tell myself. But I guess if I had to share one more piece of wisdom, it would be this: there is a lot you don’t know and you can’t plan for. You will figure it out as you go. You’ve got this!

About The Author:

Hil Moss is an active advocate, writer, mentor, and breast cancer survivor. Through her work, she aims to destigmatize conversations we have about our bodies and the patient experience. Hil is an MBA/MPH Candidate at the Yale School of Management and the Yale School of Public Health, focusing on innovation and entrepreneurship in cancer care. Follow Hil on Instagram