By Ina Joseph
We spoke to Know Your Lemons Educator, Paige Shafer, about breast cancer symptoms, breast cancer risks, and all things breast cancer.
The Know Your Lemons Foundation's revolutionizing of breast cancer education is largely thanks to it’s Global Educator Course. Not only does the course equip communities in over 99 countries all over the world with nearly 200 trained educators, but it also provides an exceptional learning experience shaped by the unique experiences and backgrounds of its educators. These “Lemonistas” provide resources that are culturally aligned with their respective communities, creating the signature balance of expertise and humanness that sets Know Your Lemons apart.
One of the Lemonistas doing this notable work is Paige Shafer.
Paige found her breast cancer symptoms in 2019 at 26 years old while recovering from a foot surgery. She noticed a lump while “free-boobin’ it at home”, but initially wrote it off as a cyst – a common occurrence she and her mother both experienced growing up. Due to her own foot recovery and her husband’s frequent travel, Paige had to wait for her annual OB-GYN visit in four months to give the lump a more thorough assessment. Her gynecologist was suspicious of the lump almost as soon as she took a closer look and scheduled Paige for an ultrasound right away. Paige was able to receive a biopsy that afternoon, and she was told she’d hear back in seven to ten days. When she received a call from her doctor barely 24 hours later, “I knew something was wrong,” Paige said.
The next 40 days were a slew of consultations, counseling sessions, appointments, and tests before actually speaking to an oncologist to devise a treatment plan and “figure out what the hell was about to happen in my life,” Paige said. Since then, Paige has received six rounds of high-dose chemotherapy, bilateral mastectomy, and 25 rounds of radiation.
In the midst of all of this upheaval came Know Your Lemons. In February of 2020, while finishing up her high-dose chemotherapy, Paige began turning to social media to share her journey and make connections, which is how she stumbled upon the #knowyourlemons campaign. “I loved how easy everything was,” Paige said. “Had I seen [those visuals] - ‘it feels like a lemon seed and not a pea’ - that would’ve made so much more sense to me.”
Paige first noticed a lump in her breast while “free-boobin’ it at home”, but initially wrote it off as a cyst. During her treatment, she discovered Know Your Lemons and has been a Global Educator ever since. Her way of paying it forward.
Ever since resonating with Know Your Lemons, Paige has been paying it forward as a Global Educator, partnering with brands who align with her breast cancer journey and providing inspiration to her online community. “It’s just super exciting! I had just started sharing my story on Instagram, and it was really therapeutic for me – sharing my experience and helping other women learn from what I’ve been through. Getting connected with Know Your Lemons gave me even more resources to share,” Paige said. She's even been inspired to create her own breast cancer related line - Titty Cat Tees. "Ever since my diagnoses I've just become obsessed with boobs and funny titty-themed things," Paige says of the venture inspired by her own breast cancer journey. "Roll that all together, and well, titties, cats, tees, what more do you need? Everything about it is just me." And as for working with other brands, as a Lemonista Paige has felt “so empowered” connecting the Know Your Lemons team with likeminded brands who can contribute, both communally and financially. “Know Your Lemons is so deserving. Every time anyone asks me where they should donate, I [list a few places], but I always say Know Your Lemons,” Paige said.
Now, Paige wants to share some of her Lemonista savvy with us! We asked her some of the basic, yet most burning questions about breast cancer, and she shared her insights in the open, honest, “easier-to-understand" fashion that makes Know Your Lemons (and its educators) the trailblazers of breast cancer education.
What are the different types of breast cancers?
Oh goodness, we might be here all day if we tried to share all of the different combinations, but I will do my best to give a quick snapshot. When talking about my diagnosis, I just rattle off a lot of letters at people, knowing most people won’t really know what it all means. My specific diagnosis is Stage 2A IDC, ER+/PR+, Her2+. “Stage 2A” refers to my tumor size: it was almost 3 centimeters, which classifies me as 2A. “IDC” means my cancer started in the milk ducts and spread into the breast tissue and lymph nodes from there. Finally, I’m triple positive; the ER+/PR+ stand for estrogen and progesterone, basically the hormones in my body feeding the cancer. And the Her2+ is more hormone speak, basically indicating how the cancer grew and spread.
Some of the most common types of breast cancers include:
- Ductal Carcinoma in Situ (DCIS)/Lobular Carcinoma in Situ (LCIS), meaning the cancer starts in a milk duct or milk lobe, respectively, and has not spread to the rest of the breast.
- Invasive Ductal Carcinoma (IDC)/ Invasive Lobular Carcinoma (ILC), meaning the cancer started in either the milk duct or milk lobe, respectively, and has spread to surrounding breast tissue.
- Metastatic Breast Cancer (MBC), which also classified as Stage IV, means the cancer has spread beyond the breast.
Some other pieces of the breast cancer formulae to know...
- ER(+/-)- refers to the tumor feeding on estrogen or not
- PR(+/-)- refers to the tumor feeding on progesterone or not
- Her2(+/-)- refers to the HER2 growth-promoting protein; if levels are higher than normal it is “positive”
Your diagnosis can be a combination of any of these things, these are just some of the most prevalent variations.
At what point in the treatment process do you find out how you got the breast cancer?
This varies for everyone, and in a lot of cases, you may never really find out how you got the cancer. I have no family history of breast cancer. In fact, about 85% of people do NOT have a family history of breast cancer at diagnosis. I had genetic testing done after my diagnosis to determine if I was predisposed to breast cancer, which would have been the BRCA1 or BRCA2 gene mutation. My genetic testing came back negative.
I do want to take a moment and mention genetic testing. If you have a family history of breast cancer or are in certain demographics, you do have a higher probability of testing for a gene mutation. Knowing this information can allow for a more intensive screening plan, preventative surgeries, and/or peace of mind. Genetic testing is not always offered, but I feel like I was privileged in getting to know that I do not carry the gene mutation as that will have an impact on my decision to have children in the future.
How do you know if you have it / what are the symptoms?
There is actually an AMAZING graphic from Know Your Lemons showing the 12 breast cancer symptoms and signs!
The 12 symptoms of breast cancer as noted by Know Your Lemons.
The 12 signs you should watch for include a hard lump, you feel a thick area, a new dimple or indentation that doesn’t go away, nipple crust, a red or hot spot, unexpected fluid/nipple discharge, skin sores, bumps, growing veins, sunken nipple, your breast is a new shape/size, the breast skin looks like an orange peel.
The only way to truly know is to have it confirmed by a medical professional, so if you feel a lump or are experiencing any symptoms you need to speak with a physician and have it looked at.
Is breast cancer more common among certain age ranges & demographics?
This is a great question! There are actually several things that increase breast cancer risk, and age is definitely one of them. As you age, your breast cancer risk increases, BUT that doesn’t mean you can’t get it young. I found my lump at 26. Some of the different risk factors include how much estrogen you’ve had, your breast type, and life style choice. The Know Your Lemons App has a whole section called “Risk Profile” to help you assess your risk level.
Do only women get it?
No! Men can get breast cancer symptoms too! It is just as important for men to do self-exams and keep an eye out for the symptoms I mentioned before.
Are all treatment paths for breast cancer the same?
No, and this is because there are so many different variations of breast cancer.
My experience has included high-dose chemo, surgery, radiation, lower dose chemo, targeted hormone therapy, and ovarian suppression.
How can you prevent breast cancer?
In most cases you’re not going to be able to prevent cancer, but you can lower your breast cancer risk. Know your risk factors, and minimize what you can.
The only way to prevent breast cancer is to not have breast tissue, which there are plenty of women who have made the decision to have a preventative mastectomy after testing positive for a genetic mutation. They’re known as previvors and there are several women sharing their experiences online.
What are mastectomies and do you have to get one if you have breast cancer?
A mastectomy is when you remove the breast tissue. Not everyone has to have one, there is an option for lumpectomy as well, where the cancer and a small area around it are removed. You can also have a single or bilateral mastectomy and chose to have only the cancerous breast removed, or both.
Is there a cure for breast cancer? How close are we to a cure?
There’s not a cure per say. You can have no evidence of disease after diagnosis, but there is always going to be a risk for recurrence, even if it is low. I’ll be honest, I have no idea how close we are to a cure. Personally, I keep up with the advancements and the research, but I don’t put much weight in the timelines because there’s always chance for delays, roadblocks, funding issues, etc.
How does the U.S. compare to other countries in terms of breast cancer risk?
Based on the graphic from Know Your Lemons, the U.S. is fairly middle ground in terms of mortality, but this can change based on what state you’re in, so again, I’m going to refer you to the app, specifically the Risk Assessment portion, and see where you stand.
What’s your biggest piece of advice for people going through breast cancer?
As cliché as it sounds, taking it one day at a time has been a huge help for me. I opted to focus on each segment of my treatment versus trying to look at the big picture, and just remembering that this is a relatively temporary thing (although that's not the case for everybody) helped me. All the shit side effects, all of the bad... it's more short-lived than not. So, just try to take in the process and honestly live as much of as normal of a life as possible through it.
But it's also ok to remember that life isn't normal any more [post-breast cancer]. There will be restrictions and changes. Your body is going through hell and back about a dozen times; you have to always remember that so you can take care of it. Take care of yourself, your mental health, everything...it's so taxing. But just try to take a step back and remember that it's not going to be forever, in most cases. That's really helped me; especially in the beginning when I caught myself thinking, "I'm always going to feel like death. This is forever..." I just felt so useless and sick and awful. But as I progressed through it, it got easier and easier. Now, looking back, I'm thinking, "Well, I've done it! I might as well make the best of it and share it. I survived!"
I think for so long, in the beginning, I was trying to find purpose in the trauma. But as soon as I stopped deliberately asking, "Why am I going through this?" I just figured it out.
"As soon as I stopped deliberately asking, "Why am I going through this?" I just figured it out."
Have any other burning breast cancer questions? Comment below or reach Paige directly on her Instagram.
Photography by: Lindsey Lay (Instagram: @llphoto__)