I can’t believe that it is already October 1st! Up until now, it seemed like 2020 was going by as slowly as possible, tormenting everyone with endless challenges and sacrifices. But it is finally October; Fall has begun, and the end of the year is around the corner.
I have to admit that October never really held any special significance for me in the past, but after going through my journey with breast cancer, it has a new meaning for me. October is a time to reflect on everything that I went through last year, to help newly diagnosed women in any way I can through a breast cancer app that I am active on, to support those going through treatments and surgeries, to chat with other survivors and see how they are coping, and to remember those that we have lost to this horrible disease.
I received a free eBook today that I want to share with everyone because, as I have learned over the last 19 months, knowledge is power! I share information that I trust with you, my readers, because I have been there. I know how scary the words “you have breast cancer” are and the thoughts that flood your brain after hearing it.
If you have any questions for me or if you just want someone to talk to, please contact me at any time. I have a Contact Me page on this website, or you can contact me through one of my Social Network links at the bottom of each page on this website.
Your free eBook, Breast Problems That Aren’t Breast Cancer, is here! We are thrilled to provide this helpful guide for you.
Did you know National Breast Cancer Foundation is committed to helping people (including you!) with their breast health? NBCF is helping people at every step of the journey by providing breast health education, delivering access to vital early detection screenings and breast health services to those who could not otherwise afford them, and helping those diagnosed with breast cancer—and their families—navigate the complex cancer care system.
When I was first diagnosed with breast cancer it was unimaginably overwhelming in so many ways. My head was spinning with questions and fears and like many newly diagnosed patients, I felt like I needed to quickly learn a new language. Little by little I began to understand my diagnosis and what it meant for me as a breast cancer patient. Now, 16 months later, I have come across all of these terms either through my own experiences, discussions with my doctors or by reading the endless sources of information that I have discovered along the way. In the beginning of my journey it would have been so helpful to have all of the information below in one place for me to reference. I hope by sharing this article I am able to help answer some of the questions you might have as a breast cancer patient or a caregiver to a breast cancer patient.
At the bottom of this article, Monica suggests writing your cancer story basics using this guide. I am finding that quite often people will ask me for this information whether it is in a new forum that I have joined or during a conversation I am having with someone. I have included my cancer story basics here in this blog post and on my “About Me” page.
My Cancer Story Basics: I was Dx at age 51 w/ ER/PR+, HER2-, IDC. I have had ACT, Rads, and I am on a 10 yr plan w/ HT, Anastrozole. My cancerversary is the date of Dx on February 25th, 2019. I have had a partial mastectomy, port-a-cath insertion, reconstruction w/reduction mammoplasty and insertion of breast prosthesis following reconstruction.
The author of this article,Monica Haro, is the community guide for the breast cancer support app BC Healthline. This particular app has been an amazing source of support for me both while I was in the middle of fighting breast cancer and also now that I am learning to live life as a survivor.
Medically reviewed by Krystal Cascetta, MD — Written by Monica Haro on July 6, 2020
Utterly overwhelmed is how I felt when I faced the uncertainty and devastation of my breast cancer diagnosis 5 years ago.
I dove into online communities to connect, observe, research, and be heard. When I did, I was lost on some of the language. There were so many terms, acronyms, and abbreviations to learn.
Some things that now seem obvious to understand weren’t while dealing with a brain processing the new trauma of my cancer diagnosis.
If you’re wondering what in the world a red devil, foob, expander, and ooph is, I’ve got you.
I assembled this glossary of some common language used in the breast cancer community in hopes of easing the way for the newly diagnosed, and empowering you to jump in on those online discussions with some general breast cancer terms.
This is an abbreviation for BReast CAncer gene. BRCA1 and BRCA2 are two genes that have been found to impact the chances of developing breast cancer, but they don’t cause cancer.
There are many possible cancer anniversaries one might note. Defining those days to celebrate or commemorate is very personal and defined individually. They can trigger mixed emotions of trauma, wins, relief, joy, and fear.
The main canserversaries I observe are my date of diagnosis and date of my DIEP flap recon.
This is cognitive dysfunction associated with chemo treatment that causes:
difficulty concentrating
memory lapses
inability to multitask
trouble remembering names, recalling words, or spelling common words
Chemo brain is real for me. I’m the queen of brain glitches.
Some experience chemo brain for the short term. Others, like me, have lingering chemo brain.
Here’s what else you need to know: hormone therapy, radiation, targeted therapy treatments, post-traumatic stress disorder, as well as depression and anxiety, can also contribute to cognition issues.
Dental problems that may occur from chemo treatment. After chemo, I began to have dental problems I had never had before, including chipping teeth, increased cavities, and sensitive teeth.
I now find it’s often necessary to use a straw when drinking beverages as my teeth are sensitive post-chemo.
A person says they were “de novo” when their first and only breast cancer diagnosis was stage 4 and they’re living with metastatic disease.
Not all people living with stage 4 are diagnosed de novo. Their first diagnosis could have been early stage 1 to 3 and they later experienced a stage 4 metastatic recurrence.
Breast cancer stage 1–3 that hasn’t metastasized to bones and organs. Early stage breast cancer is typically any breast cancer that’s contained in the breast.
Estrogen receptor/progesterone receptor. Someone might ask what your hormone receptor status is. They’re basically asking if your cancer is ER/PR-positive, or ER/PR-negative.
This is pretty self-explanatory, but what you need to know is there’s a flat community that has been doing advocacy work to normalize bilateral or unilateral flat so newbies know that flat reconstruction is an option on the recon menu.
See @flatclosurenow on Instagram for inspiration and resources.
Human epidermal growth factor receptor 2 is a protein that can play a role in the development of your breast cancer. Knowing if your HER2 status is negative or positive helps determine treatment plans.
Hormone therapy. These are drugs — such as tamoxifen — that are used to block estrogen in some tissues while aromatase inhibitors lower estrogen levels. These help prevent recurrence or slow progression of cancer to prolong life.
Lymphatic dysfunction. Swelling in the arms or other parts of the body after lymph nodes are surgically removed or damaged by radiation. It may never develop or it could develop years later.
Metastatic breast cancer. Cancer that has spread to other parts of the body such as the bones, liver, brain, or lungs. MBC is stage 4 cancer, which is the most serious stage.
Short for metastatic, metastasized, and metastasis. A person might say, “I have bone mets” or “that person is a member of the mets (stage 4) community.”
That’d be the A in ACT: Adriamycin. It’s one of the most powerful chemo drugs invented. It’s called the red devil because of its bright red appearance.
Adriamycin causes many of the classic symptoms you may associate with chemo: nausea, vomiting, hair loss, etc.
This word is generally understood outside the breast cancer community to describe someone who had stage 1–3 breast cancer and is done with surgeries or active treatment.
This means living with, through, and beyond cancer. It includes people who continue to have treatment over the long term to either reduce the risk of recurrence or to manage chronic disease.
I might say, “I’m 5 years into my survivorship,” and what I mean is I’m 5 years out from my original diagnosis.
This word is used within the community to describe anyone of any stage who has had a breast cancer diagnosis.
It’s often used to evoke a positive and empowering vibe that we’re bigger than our disease and it doesn’t define us. Within the breast cancer community, people might identify as a survivor or a thriver.
When breast cancer is ER/PR-positive and HER2-positive.
Write your story
Try writing your cancer story basics using this guide. I keep mine saved in my phone so I can easily share my details when asked in online forums.
Here’s mine: {Monica Haro}
“I was Dx at age 42 w/ ER/PR+, HER2-, ILC. I did DD ACT, rads, and I’m on the 10 yr plan w/ HT, and thriving 5 yrs into my survivorship. My cancerversary is date of Dx on Sept. 18, 2014. I’ve had expanders w/ fills, implant exchange, explanted, and had DIEP flap recon. I have chemo brain. I had an ooph at 44 that put me in early menopause. I identify as an ally to the flat community.”
Monica Haro is a Bay Area native, where she’s presently raising her son Christian. She’s the community guide for the breast cancer support app BC Healthline, serves on the board of directors with Bay Area Young Survivors (BAYS), and has shown her breast cancer advocacy art exhibit with El Comalito Collective in Vallejo, California the past 3 years. Coffee, books, music, and art make her happy. Follow her on Instagram or connect with her via email.
