BCAM – 18 things real breast cancer patients wish you knew

18 things real breast cancer patients wish you knew.

Note: Sadly, five of the contributors for this piece have since died from MBC. THAT is what I want people to know. Breast cancer is NOT the good cancer, and is in fact, too often still deadly.

For clarity: In this particular post, when I’m referring to you, I’m referring to individuals who have not been diagnosed with cancer.

Another Breast Cancer Awareness Month is almost in the books. Whew, right? This year’s been pretty quiet, for me anyway, as far as seeing pink shenanigans and/or outrageousness. Admittedly, I’m still staying home for the most part. So, my scope of some stuff remains limited.

What real breast cancer patients wish you knew about their experiences is likely pretty different than what is most often portrayed in the media, online and most other places.

Current culture still seems to mostly portray breast cancer incorrectly or incompletely — you know, always the same old fight/win/stay positive/pink stuff. It’s the rather stale narrative: the pink ribbon fairy tale version, which for the most part, I consider bogus.

For sure, it gets old correcting people’s misconceptions about cancer, breast cancer and metastatic breast cancer.

But if we don’t keep pounding the pavement, so to speak, who will?

Perhaps we need a cancer literacy effort to better educate the public about all cancers and the havoc they bring short term and long term. But that’s another post.

Today, I’m sharing 18 things real breast cancer patients wish you knew about breast cancer.

I can’t wait to read what you, Dear Reader, want people to know as well.

Maybe together we can help raise a little more REAL awareness.

I posed the statement below on Twitter and via my weekly email for followers and subscribers to finish:

I wish you (again, those not diagnosed) knew that breast cancer_____________.

Below is a random sampling of responses I got. Twitter (X) handles are included in parentheses for those on Twitter.

18 things real breast cancer patients wish you (the undiagnosed) knew

Linda (@boberg_linda) finished the sentence with:

No one ever gets over breast cancer. It’s a lifelong commitment that you can’t divorce yourself from.

Sandy shared this:

I wish you knew that cancer was a ghost that haunts you forever. It walks beside you, unseen but whispers in your ear that it can wrap its arms around you at any moment. It mocks you with the appearance of any pain or headache or malaise, cooing that this could be its time to rise and take you. It is a hated and unwanted guest that will never leave. 

Rene offered these words:

I wish you knew that breast cancer . . . affects women in their 50s (and younger) who exercise regularly, eat a healthy diet, and have zero history of breast cancer or any other cancer in their family.

Virginia (@VirginiaPrimary) wishes the following:

I wish you knew that breast cancer comes in different types and not all are “lumpy.” Lobular breast cancer forms in single cell strings so is difficult to detect.

Mindy (@MinThomp) completed the sentence with this:

I wish everyone knew that mammograms don’t pick up everything, especially when you have dense breasts. My breast cancer was lobular, resembling a spider web. (I never had a lump). I also wish I’d known that breast cancer could spread to the bones via my blood.

C.McKay (@CMcKay_CP) also voiced concerns about mammograms, dense breasts and lobular cancer.

…has different subtypes. Not enough awareness regarding how lobular bc presents (typically not as a lump) and how dense breast tissue can mask bc, particularly lobular bc, on mammograms. Need more specific lobular bc research!

Rod (@malefitness) made this important point:

I wish you knew that breast cancer was a genderless disease.

Margaret (@Indefatigabl_) wishes you knew that breast cancer:

…only kills when it metastasizes, spreads to other organs.

Silke (@silke4senate) offered this:

I wish you knew that breast cancer can feel like sciatic pain when it metastasizes and presses on your sciatic nerve. True for other nerves as well, so get to the bottom of your pain even if you’d had it since long before you had cancer.

Diana (@DianaKingDM) said this:

I wish you knew that breast cancer is a zillion miles from simply “have treatment, be cured, get on with your life as before”.

BCCWW (@bccww) said this:

I wish you knew that breast cancer treatment can create long term consequences.

Marie (@jbbc) wants you to know and understand the following:

The hardest part of my breast cancer experience is living with the legacy of infertility. I carry within me an invisible scar, a forever pain that is often misunderstood, minimized or ignored. It’s so important that pre-menopausal women with a diagnosis of breast cancer receive timely information to support their decision-making around fertility preservation. 

Sandra (@SandrasReboot) wishes you knew:

…that breast cancer brings out the best and the worst in people.

Allen, (@T_Allen1998) whose beloved wife died from MBC, wants you to know this:

In most cases, a double mastectomy does not provide a survival benefit over a lumpectomy

Jennifer’s (@mmejendouglas) response was:

I wish you knew that breast cancer….Can come back many years out of active treatment. The emotional and psychological impacts are very real and pervasive, no matter what your initial diagnosis stage.

Kelly (@stage4kelly) said she wished you knew that breast cancer:

…doesn’t care who you are, what you do, how much money you make.

Kristie (@kkbadger1) finished the sentence with this:

…causes emotional trauma as well as physical.

I appreciate Lisa’s (@HabitgratLisa) reminder and it seems the perfect quote to end with:

I wish you knew that breast cancer is more an individual experience for each person diagnosed than it is a collective experience. Please don’t “lump” us all into a neat little prototype.

Amen to that.

Breast Cancer Awareness Month often represents breast cancer in a monolithic way — painting us all as smiling, brave, pink-loving, she-roes. Men being rarely represented at all.

It’s time to change that stale narrative.

For those who have not heard the words, you have cancer, you can help us change the narrative too. In fact, we need your help.

One easy way to start is by listening to and amplifying the voices of those who have heard those words but don’t fit neatly into the stereotypical pink box. Listening and amplifying. We would LOVE that.

Finally, in case you might be wondering, how would I complete that above incomplete sentence?

Really hard to pick one thing as there are so many misconceptions out there, but I’d probably go with:

I wish you knew that breast cancer is a string of losses.

Thank you to all who contributed to this post!

If you like this post, why not share it? Thank you!

You might want to read and/or share these related posts:

Breast Cancer Treatment’s Collateral Damage, Let’s Talk About It

15 Realities at 8 Years Post Diagnosis

15 Shitty Things Cancer Has Taught Me

What do you wish others knew about breast cancer?

What do you think is the biggest misconception about breast cancer out there?

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!