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BCAM – 18 things real breast cancer patients wish you knew

18 things real breast cancer patients wish you knew.

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 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

To get more articles like this one delivered weekly to your inbox, Click Here! #KeepingItReal #SupportYouCanUse

What do you wish others knew about breast cancer?

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

18 Things real #breastcancer patients wish you knew #adovcacy #breastcancerawarenessmonth #pinkisnotacure

Milly

Thursday 4th of November 2021

Hi Nancy

Thanks so much for your blog. I'm a woman in NZ who 5 weeks ago had a partial mastectomy for Grade 2 tumour ER+/PR+. 18mm. 2 lymph nodes removed, both clear, and lymphovascular infiltration was negative. The margin around the tumour was also clear. Getting breast cancer at 49 sucks, especially when it is not in my family. The DNA tests were all negative too, thank goodness.

I was really concerned about lymphoedema before surgery, having watched my beloved step mother slowly succumb to her stage 4 lung cancer after lymphoedema took over her whole body. I was assured by my surgeon that she had never heard of anyone getting lymphoedema from breast surgery. So imagine my surprise to hear my second oncologist say it was 'unlikely' given only two nodes were removed. And then I found your blog. WTAF?

I am feeling pressured into taking radiation therapy and endocrine therapy. Both scare the pants off me. Not being in menopause yet, I am being steered to tamoxifen. When I tell the oncologist/radiologist and my surgeon I don't want either as the side effects worry me, I am told they are very rare and quote statistics at me (0.5%, <1% etc etc).

Reading all these comments from the brave women below are enlightening. The side effects are real.

I have another week to make these decisions but it is hard. I am engaged, and we were supposed to marry 22 Dec but the COVID lockdown in Auckland NZ is screwing with that. My fiancé is amazing and supportive, and I thank god he is in my life. We have a very active sex life and the thought of going into early menopause and all the side effects of endocrine is frightening.

My daughter adores my partner and I know if this cancer does come back he will love and support my daughter for the rest of his life.

I have an amazing beautiful daughter 14 yrs old. She has been with me through all of this. I explained the treatment options to her and the risks, even the 'rare' ones. She doesn't want me to do radiotherapy or tamoxifen. Some days neither do I. Quality of life is as important as more life. Reading this blog has made happy with my decision to say no to radiotherapy. And I am thinking of saying no to tamoxifen.

Some days I just want to say stuff it all and just enjoy whatever time I have left for as long as I can. I want to keep mountain biking with them both, road cycling, walking around the waterfront and laughing and enjoying life.

I am not looking back at the what ifs. They are pointless. Was it alcohol? or the 4 rounds of PGD IVF that created my beautiful daughter? Who the F* knows. And it really doesn't matter.

I have looked at those coloured dots and heard the statistics. 10 - 15% chance of recurrence for my age and type of cancer, grade 2, etc etc although it was a 'just a stage 2'. But that includes 4% chance of dying from someone else not breast cancer between 50 to 60 yrs. So really a 6 to 11% chance of dying from breast cancer in the next 10 years. If there is a 10% chance of getting breast cancer in the first place, this probability of it recurring and dying is pretty much the same. I think I will take those odds.

Nancy

Tuesday 9th of November 2021

Milly, I'm sorry you are dealing with all this. It's a lot. My best to you as you make decisions and move through whatever lies ahead. Thank you for reading and commenting too.

Bonnie

Wednesday 3rd of November 2021

I wish people understood that even though we've all been diagnosed with breast cancer, we each have our own pathology and that my treatment is different than your (mother/sister/cousin/aunt/friend/wife) because of those differences. That not everyone who is diagnosed with cancer has a lump. I had multifocal IDC (four tumors) with intervening DCIS. Basically my breast was rotting from the inside out. I couldn't feel any of it. I had people ask me why I wasn't getting a lumpectomy. That telling someone who has recently been diagnosed with cancer that they need to stop eating sugar immediately is not helpful.

Nancy

Tuesday 9th of November 2021

Bonnie, Thank you for sharing what you wish people understood. You make excellent points.

Secret Agent Woman

Sunday 31st of October 2021

Absolutely to all this. I was just posting about Pinktober myself today.

I also wish people knew that even after active treatment is over, many of us are on long term hormone therapy that causes all sort of negative side effects.

Nancy

Tuesday 2nd of November 2021

Secret Agent Woman, Great point about the long-term hormone therapy side effects that many endure. Thank you for making it.

Marie Ennis-O'Connor

Sunday 31st of October 2021

Thank you Nancy for putting this excellent post together and for including my hard-earned lesson from my own experience of breast cancer - infertility is the painful legacy of the disease I live with every day.

Nancy

Tuesday 2nd of November 2021

Marie, You are so welcome. Thank you for being willing to share about something so painful and personal. x

Leslie

Thursday 28th of October 2021

Thank you Nancy, for the research and writing you share. Your blog is a haven for everyone who doesn't need to hear one more encouraging but clueless word. I wish people knew that breast cancer at any stage is frightening.

Nancy

Thursday 28th of October 2021

Leslie, Thank you for the kind words. And yes, regardless of stage, a diagnosis is indeed frightening.

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