Young Breast Cancer Your Story and Mine: A Compact Guide

Due to the problem of omission of public breast health education, I believed that “it couldn’t be cancer.” I didn’t know my risk factors, and I believed I was too young. This belief fueled my own delay in seeking care for some months, which could have been detrimental to my survival due to the extra aggressive nature of my tumor being Triple Negative breast cancer.

Defined by what it is not, Triple Negative breast cancer is not estrogen, progesterone, or HER2 positive and is mostly found in women under the age of forty-five, Black women, women with the BRCA1 or BRCA2 gene mutation, and women of Ashkenazi Jewish heritage. It is one that grows rapidly, unlike the more common estrogen positive, HER2 negative breast cancer, which grows more slowly over time.

After the dust of my diagnosis settled and the newly prescribed Lexapro kicked in, I dreamt of finding a guide— “a friend in book form”—that I, as a young breast cancer patient, could relate to. I desperately needed something simple and supportive—something that didn’t ask anything of me, that didn’t tell me to be positive or add anything to my already burdened shoulders, but that would equip me with an understanding of the path that I was staring down at the beginning of the diagnosis. I needed something or someone that could help me learn the language of breast cancer and how I would possibly navigate this new world, this new language, and this new version of myself. I wanted to know I was not alone. I want you to know you are not alone.

At diagnosis, I felt inundated with too much information for my newly diagnosed brain to navigate through in the vast corners of the Internet. There was a whole language I needed to learn, and it was a scary one. I needed something I could grab, hold, and flip through to find what I most needed to get me through each stage of the journey. I don’t know about you, friend, but at diagnosis, I also quickly grew tired of recommendations to stay positive. I grew tired of “experts” and even groups of survivors putting pressure on the newly diagnosed to peel themselves off the floor, jaws still agape from hearing their diagnosis, to stand up and get fighting with a smile on their faces, stating unhelpful platitudes about positivity’s ability to afford cancer-havers with better outcomes.

Because of this, I wrote a book that only supports and doesn’t ask anything of the reader except to keep going, even if doing so whilst donning a scowl. Go scared, go tired, go sick, go angry, and go wishing you could stop going; just make sure to keep going. I wrote down what I needed when I was diagnosed. And I am excited to share it with you because I know others (hopefully you!) will benefit from my version of a guide to young breast cancer.

It’s 2024 now, and I am at present a three-year survivor of Triple-Negative Invasive Ductal Carcinoma breast cancer, one that statistics say is most common to return within five years. I’m inching along in disbelief that so much of it is behind me. I went through sixteen IV chemotherapy infusions administered through a port in my chest and a bilateral mastectomy with aesthetic flat closure during the pandemic with two young kids. I honestly cannot believe I did that, and I did not do it gracefully or happily, I might add.

However, I want to remind you that we can do hard things, friend. You have done hard things before. You can do it again. Moment by moment, until, suddenly, you surprise yourself for having completed so many hard things. I have a print, situated right in my eyeline across from my bed, with a quote by my favorite poet, Morgan Harper Nichols. It says, “It’s okay if strength is nothing more than slow and careful breaths that you bravely draw forth from one moment to the next.” Breathe slowly and carefully with me, would you? I wrote this guide for you: the cancer-having young people who don’t see many in your cancer center who are younger like you and who need support from one another.

I know you may need information presented carefully, with kindness and understanding, on what it is like and how to handle living with breast cancer in your younger years, from someone who has been through it, from someone who is real and raw. Young Breast Cancer: Your Story and Mine is short on purpose. I want it to be accessible to you, as you are living your busy, full life while navigating this time of acute crisis. I want you to be able to slip it into your purse or diaper bag to read in waiting rooms and on long car rides, to feel accompanied by someone who has been there and lived to tell the tale. I weave my personal experience into the story, but the bulk of the book is very practical, helping to explain experiences that you may have throughout your diagnosis and treatment.

This compact guide starts out with a brief summary of my personal experience, and then it focuses on practical advice and explanations of different aspects of a young breast cancer diagnosis and treatment. This includes learning the new language of breast cancer, what many terms mean, how staging works, how to make decisions that are best for you, and how you can fire your doctor if it’s not a fit. I offer advice for raising kids while going through cancer, going through chemotherapy, and more. I desire to help you find yourself again, to realize you are still you, even here, facing what my friend, survivor, and Wildfire Magazine creator/editor, April Stearns, calls “different scenery along life’s main road.” Because as young women with cancer, we face specific and unique challenges like child rearing, fertility issues, singleness, job instability, and a deep sense of loss of self and future.

Please use this guide as needed. You do not need to read what you are not ready to read. I designed this for you to pick and choose what is relevant to you without overburdening you. Included, you will find resources, places to find aid, free retreats and adventures offered to young people with cancer, and support group ideas, along with my own emotional support. As the years get further from 2024, when I did my final edits on this guide, please use the QR code included in Chapter 3 to get to the updated resource list, as well as statistical updates as they (hopefully) improve. I will keep it updated at least once per month.

I’d rather meet all of you in real life, but for now we have this book to connect us. I am sorry you are here, and I welcome you to the worst club with the best members.

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“When the words “It’s cancer” are said to you, the feeling of full body dread can cause a sudden inability to hear anything else. The inundation of information can become a mountain of loneliness and chaos. You are not alone.

In her debut book, Young Breast Cancer: Your Story and Mine, Erin shares insight without toxic positivity, judgement, or solutions on what it can be like to be diagnosed with breast cancer under age 45. She offers gentle ideas, resources, and personal stories to open up space for those diagnosed and their loved ones to feel what they need to feel, to get help throughout the experience, and to stay themselves during and after cancer. As you read this guide, you are invited to take only what you need and ignore what is too much right now. Remember to reach out if you need a friend. You don’t have to do this alone.

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