Advice for Newly Diagnosed

12 Things I Would Tell Anyone Recently Diagnosed With Breast Cancer

Hey, girl. You just gained entrée into the crappiest club you never asked to join. Welcome.

A quick heads-up: You’re about to be hit with a ton of information and advice – from your doctors, friends, family, and yes, even complete strangers.

I’m not here to burden you with anything extra. But, having been a card-carrying member of the cancer club since early 2017, I get asked a lot by people (like, a lot) what advice I would give to their newly-diagnosed loved one. So I’ve put together this list.

But first, I want to caveat what I’m about to say with the understanding that this is not a one-size-fits-all guide. Medically speaking, breast cancer is not monolithic. Your treatment plan will probably look vastly different than mine, to say nothing about how each of our bodies are impacted by it. And yet, the emotional fallout is, unfortunately, pretty common.

So, get comfortable in cancer-land, because it’s going to be quite a ride.

1. Stay Present.

The period between diagnosis and immediate treatment (surgery, chemo, radiation, etc.) is going to feel like utter chaos. There will be a lot of new medical-ese that you need to be acquainted with (like, who knew menarche was the same thing as your period?), which frustratingly, doctors too often take that for granted. Your life will be lived in these very small, week-to-week increments of non-stop appointments, scans, and waiting for results. The only way you’ll make it is to just go with it and let the rest fall away.

2. Turn to Google – but do so sparingly.

It’s tempting to go online to seek out information, but I guarantee it’s going to take you down a lot of rabbit holes, which inevitably will cause a lot of unnecessary anxiety. If you do insist on creeping Dr. Google, either have someone you trust do it, and/or only check out reputable, science-based websites (think, research institutes like The Mayo Clinic and resources like the Canadian Cancer Society). Stick to page 1 of your search!

3. Be your own best advocate.

Remember when you first found your lump? There was something inside telling you to get it checked out. Harness that inside voice again. Women are too often afraid to question the experts, but only you know what’s right for your body. If something doesn’t make sense then you need to speak up. And by all means, seek out second opinions.  

4. Be a good patient.

Come to every medical appointment prepared with questions already written down. Oftentimes patients will bring a family member or friend to take notes and record what the doctors say. That way you can absorb the info when you’re away from the hospital and refer back to it as needed. 

5. Connect with any doctor possible.

If at all possible, tap into any extended network for a connection to a doctor. They don’t have to be an oncologist and they can be your friend’s third cousin once removed, but sometimes it just helps to run questions past those people or have them with you at your appointment. Personally speaking, I was incredibly fortunate to come from a medical family; my cousine is an ICU-doctor who was there for my diagnosis appointment and the other MDs in my family broke everything down for my mum and dad. It may not be an option, but it is always worth a try. 

6. Ask about Genetic Testing.

While most breast cancers are not inherited through genetic mutations like BRCA, it’s worth exploring if only to help rule it out.

7. Enrol in as many studies as possible.

You know how a lot of hospitals do research and are looking for patients to be included in their studies? Well, if that’s the case, get thee enrolled! The reason for this – other than the fact that you’ll be contributing to cancer research – is that when you’re part of these studies, it means medical staff is paying closer attention to you over the long term. There can be more monitoring and testing involved, which is never a bad thing when it comes to cancer care. 

8. Don’t be a hero.

Testing and surgery can be extremely painful and scans are traumatic AF. If you need something to take the edge off, then, by all means, see a doctor to address any anxiety or pain needs. Scanxiety is real and there’s simply no point in suffering more than you have to. 

9. Play the Cancer Card.

This is your no guilt, no excuses, get-out-jail-free, reclaiming-my-time card. It’s ok to say no to things. It’s ok to sleep all day. It’s ok to appoint someone to create a schedule for people to cook your meals, look after your kids, clean your house and walk your dog. It’s called self-care.

 10. Expect your people to disappoint.

No disrespect to your loved ones but it’s safe to say that when it comes to your cancer, some of them will say some seriously stupid things. Asinine phrases like, ‘stay positive’ or ‘but, you don’t look sick’ or ‘everything happens for a reason’ will come out of their mouths and it’ll take everything in you not to punch them in the face. What’s worse, you’ll have people who you thought were your ride-or-die, here-through-thick-and-thin turn around and completely ghost you. This has been the case for every single cancer patient I’ve ever met, myself included, and it’s heartbreaking. It’s an unfortunate truism that there’s nothing like a crisis to reveal whom you can really count on.

 11. Tap into social networks.

Here’s my hunch: Despite having your family, friends and a top-notch medical team, you’re still feeling incredibly alone. What you really need is to find others like you. Because that moment when you find another young cancer patient who just ‘gets it’ will be key to finding your way in the world after diagnosis.

Whether it’s Rethink Breast Cancer, Wellspring, the Pynk program at Sunnybrook Hospital, or the countless micro-communities on Facebook and Instagram, it’s these safe spaces where you gain knowledge, sympathy, and understanding. Think of them as a virtual support group: a place to share, a place to vent, a place to celebrate, and crucially, a place for people to hold space for you and bear loving witness to your pain.

12. After-treatment is often the hardest.

Getting to the other side of treatment is the goal but somewhat counter-intuitively, it’s often the most difficult period for cancer patients. Those first few weeks after diagnosis can be a distraction from emotion; you’re just in survival mode. It’s afterwards when you’re really forced to feel them for the first time. Sadness, loss, fear, anger, anxiety – it’s all here, and it’s horrific, to tell you the truth. But processing that grief and trauma is also the only way you’ll be able to put yourself back together and make a full recovery.

And being intimately familiar with everything you’re about to go through, here’s my final and most important thing I would tell you: You got this. – Aya McMillan

Are you a young woman with breast cancer looking to connect with others? Join the Rethink community here.

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