Breast cancer awareness -16 things I wish I’d known at diagnosis

I’ve read a fair number of articles about this topic over the last decade+ but haven’t written one myself. Perhaps it’s because the idea of wishing I’d known more about cancer upon diagnosis sounds strange to me.

When you think about it, would you really have wanted to know any of this stuff before your diagnosis?

Maybe. Maybe not.

Besides, for me, after my mother’s diagnosis and death from metastatic breast cancer, what in the world else would I have wanted to know when diagnosed?

I already knew way too much.

Still, I got to thinking maybe some things would be nice to know, so perhaps there is value in sharing a few things I wish I’d known when I was diagnosed. That’s what I’m hoping anyway.

And, since this is Breast Cancer Awareness Month, why not spread some real awareness, right?

Be sure to share a thing or two you wish you’d known upon diagnosis in the comments below. You never know who might be reading and benefiting.

16 things (in no particular order) I wish I’d known when diagnosed with breast cancer:

1. You’ll be shocked or at least surprised to hear the words, you have cancer.

You’re human. No one expects to have those words attached to them. I sure didn’t — even with my family history and that whole BRCA thing. Maybe I was in denial. Perhaps we all are, to some extent.

It’s normal to think cancer happens to other families, to other people — certainly not to yours or YOU.

And then one day, it happens.

2. After a diagnosis, things get rolling fast; but at the same time, it feels like things are happening in slow motion at times. And the number of appointments you’ll have is shocking.

Suddenly, there are countless appointments, exams, tests and procedures, surgeries, decisions to be made, treatments to start, and so on. And usually these appointments take place in stuffy rooms with glaring, buzzing florescent lighting.

It might also feel like things are moving way too slowly. I remember hollering (not proud to admit it) from another room something like, why is it taking so long? when Dear Hubby was talking with my breast surgeon about setting the date for my upcoming bilateral. Yeah, I was feeling a bit distraught that day and made him take the call. Poor guy.

I was feeling very impatient and didn’t want to wait a couple weeks, even though I was also in no hurry whatsoever to say goodbye to my breasts.

3. Modesty — forget about it!

With a breast cancer diagnosis in particular, it’s really quite astounding how many times you’re asked to disrobe. It gets to be a whole lot of people gawking, poking, analyzing, photographing, and yes, even drawing with markers on your breasts.

I imagine the same holds true for other cancers and illnesses as well. It’s just different body parts that get subjected to all the scrutiny.

Feel free to chime in.

4. Your computer, laptop, phone, or whatever your favorite Googling device is, will become your new best friend.

Some folks recommend staying off the internet. I say, are you kidding me?

I wanted to dig up every piece of information I could find. Like my friend and fellow blogger Carolyn Thomas wrote in one of her great pieces titled, Four ways we use online info to make healthcare decisions :

I would not buy a coffeemaker without first Googling coffeemakers to learn all I could about my options. So, of course, I’ll go online if I have questions about  something far more important: my health. Most of us are already online, so telling us “Don’t Google It!” is patronizing – and just plain wrong-headed.

Plus, some of the best support out there is the support you find online. I had no idea how helpful it would be to connect with other Cancer Havers online.

I wish I’d known that from day one.

Hopefully, you have at least a couple real-life people you can call, text, actually talk to face-to-face, lean on, vent with, ask for help, or get whatever you need from, too.

Help and support from others is vital to your well-being.

5. It’s never over. Not completely anyway.

If you’re thinking your cancer is going to be “typical” and take a year or so out of your life and then you’ll be back to your old self and your old ways, think again.

First of all, there’s no such thing as typical. And that one year thing — uh-uh. Regardless of stage or type, treatment and the ongoing side-effucks last a long time.

So, buckle up. Things get bumpy and for a long time too.

And just a heads up, if you’re lucky enough to have an endpoint to treatment, some folks in your life won’t understand why you haven’t just moved on. Fortunately, some will. Keep those folks close.

FYI: I wrote about moving on vs moving forward extensively in my book, Emerging. You might find it helpful.

6. Speaking of buckling up…that rollercoaster analogy is sorta cliché and worn out; nonetheless, it does fit.

Your emotions will be all over the map, at least for awhile. You’ll be crabby, weepy, anxious, angry, fearful, needy, and a gazillion other things. Some days, you’ll feel like you can tackle anything. Other days, you’ll want to stay in bed with the covers pulled over your head.

Any, and all, of your emotions are normal. Forget about faking it, although of course, we all have to sometimes.

7. Some folks will treat you differently and their eyes will wander to your chest.

Not much need to say more, is there?

8. You can’t go back.

Once that cancer beast is out of the gate, your old life is over. Sorry. But that’s the way it will likely be.

Pre-cancer life — say, adios.

You might want to read, You Can’t Go Back.

9. People (even your medical team) will likely say things that irk the heck out of you.

Get ready to hear the Cancer Clunkers.

What you do when you hear them is up to you. (You don’t have to stay quiet. Really, you don’t.)

10. The Positivity Police are out there — ignore them.

Trying to live up to societal expectations is a waste of your time and energy. There is no right way to navigate your cancer maze. There is only your way.

But please know this: you don’t have to smile your way through any of this cancer crap.

11. You will need to grieve for the old you. Many times.

Breast cancer is a string of losses. It just is. Loss requires grief. I can’t stress this enough. Grief (any kind) has no timetable. So, be sure to cut yourself some slack — no, not some — lots. I had no idea how much grief and breast cancer go hand in hand.

You might want to read, Breast Cancer Is a String of Losses.

12. Like it or not, you’re going to have to sharpen your self-advocacy skills.

This is just reality. After all, it’s your life. Your body. Your cancer. Your future.

But remember this: just as with all skills, you’ll get better at it over time. Trust me, you will. For some, including me, self-advocacy will never be easy. But it will get easier with practice. At least a little bit easier.

13. Side effects of treatment vary from person to person, but one nearly everyone with cancer experiences is fatigue.

You might want to read, 7 Tips to Help Deal with Cancer-Related Fatigue.

14. Some folks are obsessed with seeing and talking about cancer as a military campaign.

Battle-talk language — get ready for it. If this way of framing cancer is fine with you, great. But if it irks you, feel free to speak up. Remind people that cancer is an illness, not a military campaign.

You might want to read, Stating a Person Lost Her Battle to Cancer Is Insulting! and/or Let’s Stop Telling Cancer Patients How to Feel.

15. You might feel pressured to do big things with your life post diagnosis, or at least something big.

This expectation is just plain dumb. You and I were not sitting around twiddling our thumbs before diagnosis day. Cancer is a horrible disease, not an enlightenment program.

Dealing with cancer and living your life on your terms is more than enough to accomplish, so ignore all that noise and pressure.

You might want to read, The Pressure to Be an Over-achieving Cancer Patient.

16. You can do hard things, and you can do this too.

As you know, I am never one to sound Pollyannaish, but your body is amazing. YOU are amazing. You will do whatever it takes, and you will do this too as best you can.

Sometimes, you’ll surprise yourself as to what you can handle. Sure, sometimes you’ll disappoint yourself too. Both are okay.

Because like I’ve said a gazillion times: Be real. Be you. It’s enough.

So, those are 16 things I wish I had known upon diagnosis. I’m sure there are more things, but this list seems long enough for today.

I hope someone out there benefits from reading it and feels less alone.

If you like this post, thank you for sharing it!

If applicable, what’s something you wish you’d known when you were first diagnosed?

Which of the 16 resonates most with you?

On the flip side, what did you know that you wish you hadn’t?

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Note from Nancy: I wrote about cancer language, cancer worry, survivor guilt, loss, pet grief, COVID-19, DIEP flap surgery, life as an introvert, aging, resiliency, and more in EMERGING. Available at Amazon and most other online booksellers. Click on the image below to order your copy today!