38.4% of men and women will be diagnosed with cancer at some point in their lifetime (National Cancer Institute, 2019). 1 in 8 women will be diagnosed with breast cancer.
Cancer + Motherhood: What One Survivor Wants You to Know
Shelley Hopper
We Need to Talk About It
“We need to talk about breast cancer more, and not just during October,” says survivor, Kirsten Lynch, a wife and mama, and lover of yoga and spending time outdoors in her hometown near Seattle, and at her family lake house in Idaho.
Kirsten is a clinical social worker + child and family therapist with a master’s in social work, who continued to work full time during her diagnosis + treatment so she could keep her health benefits. (Talk about the #strengthinmotherhood).
“I think it’s really ridiculous that the baseline for mammograms is 40. Women in their 20s and 30s are being diagnosed with breast cancer every day,” says Lynch.
Be on the Lookout & Be Preventative
While there is unfortunately nothing we can do to prevent breast cancer altogether, there are a few things we can do to help us be on the lookout for any changes in our breasts/bodies, like the following:
- Remember we have to be our own advocates as women
- Perform self breast-exams every month; become comfortable and familiar with our breasts so we can be on the lookout for any changes
- Speak up to doctors if something doesn’t seem right
- Have routine mammograms and request an ultrasound/imaging if we find any type of lump
“Educate yourself, learn your breasts, and get regular screenings. Be your own advocate,” says Kirsten…“I just want people to know that their health is a gift and to be appreciative of your body and advocate for yourself. Listen to your instincts [if something doesn’t seem right].”
Being proactive is key to helping catch any suspicious changes in your breasts. Self breast exams should be an important part of your monthly routine. Learn how to perform one here.
“When you do breast exams, don’t go hunting for lumps and cancers, just get to know your breasts, so if you’re feeling it down the road, you can compare to what you felt beforehand and what seems new/changed. As we get older, breasts become fattier; but some women have really dense breasts, which can make it hard to see things, even on a mammogram." -- Kirsten Lynch.
Meet Kirsten
Kirsten Lynch is 35 years old and was diagnosed with breast cancer one year ago this month (on October 25th, 2018), a week before her son’s second birthday.
The day we interviewed Kirsten (Wednesday, October 23rd) was exactly one year since her biopsy.
One year ago the Friday after we interviewed her (Friday, October 25th), was the day she was diagnosed. A week before her son turned two, she was no longer “just” a mama, she was a mama with an official breast cancer diagnosis. It was two weeks before she was supposed to be going to Hawaii on a much anticipated family vacation, she was cancelling flights and hotel reservations, trading them for a first-round-of-chemo-date.
“One of the hardest parts of breast cancer is that treatment takes away your femininity and fertility. I went into chemical menopause — some women come out of it, and some women don’t… I lost what I imagined for my future [growing my family], and I lost all of my womanhood — I lost my breasts, my hair, my eyelashes, my hormones, and I went into chemical menopause. I felt like a shriveled up, 80-year-old woman at freaking 35 [years old],” says Kirsten, “My femininity being taken away was a huge loss, and is still something I struggle with…I was in the middle of starting a family, and don’t know if I’ll ever get my fertility back.”
Finding The Mass
At the age of 34, Kirsten found a mass in her breast that was getting bigger, quickly, and becoming more and more painful. She went to her primary doctor to report the mass, and is grateful her doctor took her seriously and ordered a mammogram and an ultrasound immediately; she could tell her doctor was concerned and made the appropriate referrals.
“My doctor / PCP did not "wait and watch"; some doctors do (especially with younger women) and they’ll watch the tumor grow and grow until it’s metastasized in a woman’s body [and there are less options].” says Lynch.
Her mass showed up on the mammogram, and the ultrasound was able to detect if the mass was solid or fluid-filled (which would have been a cyst). It came as a total shock to Kirsten that the mass was solid and needed to be biopsied. A week later, she had the biopsy; 2 days after that, the partial-results came back that the mass was, in fact, cancerous.
The Diagnosis
At that point, Kirsten was diagnosed with triple negative breast cancer (15% of breast cancer is triple negative, according to John Hopkins Medicine and the National Breast Cancer Organization).
“You need to be able to sit and mourn and grieve,” says Lynch, when she heard her mass was, in fact, cancer and not a benign cyst.
Triple negative breast cancer can be more aggressive and difficult to treat, and is a type of breast cancer that is more likely to spread and recur depending on the stage of cancer and the grade of the tumor. This type of breast cancer is more likely to affect younger people, African Americans, Hispanics, and/or those with a BRCA1 gene mutation (John Hopkins Medicine and the National Breast Cancer Organization, 2019).
Kirsten before chemo, after she had her hair cut so her wig could be made.
“A diagnosis of triple negative breast cancer means that the three most common types of receptors known to fuel most breast cancer growth – estrogen, progesterone, and the HER-2/neu protein – are not present in the cancer tumor. This means that the breast cancer cells have tested negative for hormone epidermal growth factor receptor 2 (HER-2), estrogen receptors (ER), and progesterone receptors (PR). Since the tumor cells lack the necessary receptors, common treatments like hormone therapy and drugs that target estrogen, progesterone, and HER-2 are ineffective. Using chemotherapy to treat triple negative breast cancer is still an effective option. In fact, triple negative breast cancer may respond even better to chemotherapy in the earlier stages than many other forms of cancer.” — John Hopkins Medicine and the National Breast Cancer Organization, 2019.
Support From Friends & Family
Kirsten is grateful both sets of families [her and her husband’s] were local. “My mother-in-law was practically living with us to help with our son. My parents as well; after each of my chemo treatments on Fridays, our son would go to my parent’s house for the weekend (because my husband works on weekends). It became his normal.”
She says her family has been amazing through everything, and her husband went to every single chemo appointment with her, and sat in the chair next to her, ensuring that she was always comfortable.
“I would be completely lost without my husband. I can’t imagine going through everything without a partner, or as a single mom - he has been my rock. He has seen my worst of the worst, and has been there through thick and thin. It validates my choice that I picked the right spouse.” -- Lynch
Some friends showed up and stood by her, and some friends didn’t. The thing with a cancer diagnosis at a young age is that people don’t really get it, don’t know how to help, have a lot going on in their own lives (especially moms with young children), and many don’t know what to say or what to do.
“I just want people to know that their health is a gift. And to be appreciative of your body. And advocate for yourself. Listen to your instincts...I’ve read so many stories of women saying, ‘I just knew it was cancer’, and there’s something to be said to that. We know our bodies best. I think it’s important to just be educated. Don’t be so afraid of it that you think, ‘this won't happen to me.’ It’s 1 in 8...one in eight women will get diagnosed with breast cancer. We are all going to know someone in our lifetime who will get diagnosed. It can be you," says Kirsten.
The Winding Road of Treatment
After Kirsten’s diagnosis, she saw specialist after specialist and doctor after doctor.
Although the cancerous mass was in one breast, she had a double mastectomy, choosing to have the other breast removed for peace of mind the breast cancer would be less likely to return in the second breast.
"Me at the tail end of radiation this past August. Hair starting to grow back, skin burned. 4 months post-chemo." -- Kirsten Lynch
Since triple negative breast cancer can potentially come back (most commonly in the first 1-5 years, compared to estrogen-positive cancers that can come back 10-20 years later), especially near the incision, in the breast area where breasts used to be, or in lymph nodes, she will continue to see her oncologist once every 4 months — unless she has a symptom come up that won’t go away, in which case, she will schedule an appointment right away.
Since she no longer has breast tissue, she doesn’t have to have repeat imaging, like mammograms.
“They don’t like to do follow-up scans just to do them. A lot of women want them because they get scared, but you have to weigh the risks of radiation exposure.”
Living as a Survivor
Kirsten is officially cancer-free currently, and is trying to find her new "normal" as a survivor. A cancer diagnosis and undergoing treatment “changed my perspective on everything,” she says.
When asked what it’s like to live as a survivor, Kirsten says she still has aches and pains from aggressive treatment, and is trying to get her energy and strength back, saying it can be tough to move past lingering side-effects from chemo and surgery.
“It’s terrifying -- you’re always wondering if symptoms are possibly cancer. You have to have your anxiety in-check,” says Kirsten.
“I’m still trying to figure out how to take it day by day and live with my new normal. I have to catch my thoughts, stay positive, and look at how far I’ve come — shift my mindset — I’ve found a new strength within me that I never knew I had.”
Kirsten says a huge part in her breast cancer journey has been connecting with other survivors. “It’s a really isolating place to be, especially being young and surrounded with other moms with young kids who are busy. They can’t understand what I’m going through and it’s a really lonely place to be.”
We asked her where she found support from others who were going through breast cancer treatment, and she says, “One organization that’s amazing is ‘The Breasties,’” which was founded by a few women who had the BRCA1 and BRCA2 genes -- the best-known genes linked to breast cancer risk. “Everyone has these genes, but some people have an inherited mutation in one or both that increases the risk of breast cancer,” says the Susan G. Komen foundation.
The founders of The Breasties had prophylactic (preventative) surgery to reduce their risks of getting breast cancer. Each state has their own chapter and does monthly meet-ups. “They do wellness retreats for survivors,” says Lynch.
For more information on The Breasties, you can find them on Instagram at @the_breasties (instagram.com/the_breasties).
Advice for Others
“STAY OFF THE INTERNET!” says Kirsten. “Googling things about cancer will lead to panic attacks. There’s so much misinformation, and there’s a ton of statistics that are frightening. It’s super important to find your support, find your people, find other survivors. Prioritize yourself -- ask for help. You cannot get through this without support.”
She also says when you’re reaching out to others, especially online, to be aware that some stories can be triggering / some can be inspiring. “Be cautious about the internet and how much you use that for your support,” she says.
What Others Can Do to Help
“It’s the small things -- simply text, pick up your phone to FaceTime. It’s not hard to stay in touch with modern communication and technology. I don’t need gifts and displays of affection, I just need support and want to hear from you,” says Lynch.
She says it’s important to remember that a breast cancer diagnosis is a really long journey, and that someone will need your support for a long time. “The casseroles stop coming and people stop texting; in the beginning it’s all there but then people drop-off. It would be weeks sometimes where time would go by and I wouldn’t hear from friends I thought would be there for me forever.”
Kirsten suggests these things if you want to support a friend with breast cancer:
1. Follow a survivor on IG, and try to get an idea of what it’s like to live in their shoes and see what they’re going through. This will help you see how you can support someone you know and love.
2. Be there for emotional support. The mental battle of it all is just as hard, if not harder, than the physical journey. Be emotionally available for your friend. If you don’t know what to do, just sit there next to her and listen. “Or Google it” says Kirsten…”Thanks to Google, you’ll find things like ‘ten things not to say to a cancer patient’, ‘ten things to do for a friend who has cancer’, ‘ten things [for practically anything]’.”
3. Just make an effort. If you’re not sure what to do or what to say, try anyway. Ask a therapist, talk to another survivor and ask them what they needed, etc. Just be there and keep showing up.
4. It takes two seconds to say “thinking of you” in a text. Don’t stop reaching out throughout the entire treatment. Show up beyond just the first few weeks when their world is shattered.
“In general, people are really scared to talk about cancer; they don’t know what to say and don’t want to say the wrong thing, so they say often say nothing. People don’t want to talk about death, but I had to face my own mortality with a young son.” — Kirsten Lynch.
We asked Kirsten what she would tell someone who has a friend or family member who has been recently diagnosed with breast cancer, is currently undergoing treatment, or has been in treatment for awhile, and she says the number one thing she would tell someone is to just be there and listen; “You need to be able to sit and mourn and grieve,” she says.
“The mental battle of it all is just as hard, if not harder, than the physical journey…As women we often have deep emotional connections with our girlfriends, and the most important thing is to be emotionally supportive of someone who has been diagnosed. Being able to hold emotional space for women going through breast cancer. Just listen. Just pull up a chair and listen…”
“It’s devastating and heartbreaking to receive a cancer diagnosis in your 20s/30s. It’s shattering. I don’t even have words to describe the pain. For people to disappear is so hurtful.”
“I have a little family history of breast cancer, don’t have the gene, don’t know why I got it. It turned my whole life upside down. So much for starting a family. So much for working on your career. Being able to hold emotional space for women going through this -- just listen. Just pull up a chair and listen.”
Reach Out
If you or someone you know may want to reach out to Kirsten, she wants you to know she is here for you. “If I can help anyone, I want to, because it’s the worst experience ever,” says Kirsten. You can DM Kirsten on Instagram — find her at @kirstenl55 (Instagram.com/kirstenl55)
Shop for a Cure
During the month of October, 100% of proceeds from our Fight Like a Mother t-shirt go to the Breast Cancer Research Foundation. We've marked them down for the remainder of the month to $19 so you can fight like a mother.