Life Beyond the Pink Ribbon: Breast Cancer Victors Share Words of Wisdom

Back in 1985, pink began to compete with orange as the predominant color of October. That’s when October officially became recognized as Breast Cancer Awareness Month (BCAM). So now, in addition to footballs, falling leaves, and pumpkins, pink ribbons are sharing space as one of the faces of fall. Because BCAM is so much bigger than a pink ribbon, we thought we’d go beyond the ribbon into the lives of actual breast cancer survivors. But first, let’s take a look at the numbers.

Whether or not you've been impacted by breast cancer, these statistics might be familiar to you:

  • One in every 8 women will develop breast cancer in her lifetime. Less than 5 percent of breast cancers are diagnosed in women under 40.
  • In 2018, over 250,000 women will be diagnosed with breast cancer. Of them, over 40,000 will die.
  • 5-10 percent of breast cancers are hereditary. Advancements in genetic testing allow women to find out whether they have genes (like BRCA1 and BRCA2) that elevate their breast cancer risk and make them more prone to developing it.
  • New cases of breast cancer have been stable in white women, but slightly increasing in black women. Not only is breast cancer more common in black women, but they are more likely to die from breast cancer than women of any other ethnic group. Black women are more likely to be diagnosed with breast cancer at earlier ages, and less likely to have access to mammography services due to health disparities.

One aspect of breast cancer treatment that isn’t discussed often is the effect on reproductive health and fertility. The emotional effects of dealing with breast cancer can caused decreased sex drive and self-image concerns. Depending on the specific case, an oncologist may even recommend removal of the breast tissue, ovaries, and/or uterus. Plus, there’s also chemotherapy and radiation to consider. Chemo kills cancer cells but can also destroy healthy cells, including reproductive cells, in the process. Radiation is typically more localized to a specific area and therefore doesn’t kill as many healthy cells, but it still can.

Some doctors recommend waiting two years after completing breast cancer treatment to become pregnant. But for women who may not want to wait or whose eggs might be obliterated by cancer treatment, egg-freezing before treatment begins could be an option for preserving fertility.

Let’s chat with our breast cancer victors and find out how breast cancer impacted their lives. Many of these women were younger (around age 40) when they were diagnosed, but remember that the risk of breast cancer increases substantially with age - the average age of diagnosis is 62.


SESAME

When were you diagnosed with breast cancer and how did you find out?

A few months after my 40th birthday, I felt something on my breast by accident and it prompted me to do a full self-exam. Sure enough, there was a pea-sized lump. Before, I’d heard people say that when you know, you know. And when I felt that lump, I knew.

I was surprised though since my mammogram the previous month came back normal. Since I already had an annual pap smear appointment in two or three days, I decided to wait until that appointment to get the lump checked out. I tried not to freak out in the meantime. At that appointment, the doctor asked if there was anything unusual I wanted to discuss. I told her about the lump, and she performed an exam to see if she could feel it herself. I had a biopsy done on the breast lump and it came back positive.

Note: Here are easy-to-understand guidelines from the the American Cancer Society about when to start getting breast cancer screening (mammograms and ultrasounds) and how often you should get them.

How was your breast cancer treated?

My surgeon gave me 3 choices: do nothing (my reaction: what?!), have a lumpectomy, or have a mastectomy. I chose to have a mastectomy and the surgery was apparently successful. They were able to remove the whole lump with clear margins, which means that no cancer cells were seen at the very edges of the tissue that was taken out. I asked the surgeon whether there was anything else I needed to do. (Mind you, he was also my aunt’s surgeon--she had breast cancer, too--and I knew she started taking tamoxifen after surgery, a medication that helps prevent breast cancer from coming back. My aunt hadn’t had genetic testing, and at this point, neither had I.)

The surgeon said that there was nothing else I needed to do. I was hesitant about that response, but I trusted the surgeon. Two years later, I had a recurrence in the same side. A nurse I was close with told me confidentially that it was the same cancer as the last time.

How did you and your doctors handle the recurrence?

This time again, I found the breast lump myself. First and foremost, I changed surgeons and got an oncologist. I told my gynecologist about it, and everyone moved with a lot more urgency than the first time. Within a matter of days, it was confirmed that the lump was cancerous and that the cancer had spread to my liver.

The treatment strategy was to focus on the treating the liver, with the hope that the chemo cocktail would also take care of the lump in my breast. They would evaluate the need for additional treatment after the liver was clear. I had chemotherapy for 1.5 years and I had up to 56 radiation treatments. Both my liver and breast were clear after treatment, and I started taking tamoxifen.

Given your family history, did you undergo genetic testing for the BRCA gene?

I had been in remission for over a decade by the time I met with a genetic counselor. Times had changed, genetic testing was more affordable, and my insurance would cover it. Before the counselor provided my results, I had to let her know what I would do if the results came back positive. I decided I would have a mastectomy on the left side and, of course, let my family know. The results came back inconclusive, which isn’t positive or negative--it just means they weren’t able to tell from the test.

If I had known at my first diagnosis what I know now, I would have had a double mastectomy for peace of mind.

What is your most important piece of advice for other women during breast cancer awareness month?

PLEASE perform regular breast self-exams. Even though my mammogram came back negative, I discovered a lump in my own breast just one month later. Mammograms are important, but they don’t always show the whole picture.

Do you commemorate breast cancer awareness month in any way? If so, how?

I commemorate BCAM by participating in the Walk for Life in Columbia, SC. I have a team each year and we raise money to be used locally to support breast cancer research.

What would you say to other women currently experiencing breast cancer?

Keep the faith and don’t give up. I know people handle things differently, but your attitude plays a huge role. Try your best to stay positive. When you get down--and you will--try your best to get back up.


SELENE

Tell us about how you found out you had breast cancer.

I’d just turned 40 years old when a mammogram I had came back “suspicious.” Happy Birthday to me… At that point, I knew it wasn’t good. I went in for a diagnostic mammogram and a biopsy that confirmed a breast cancer diagnosis. It was Stage 0-1, localized breast cancer. Fortunately it was early, but still, I was nervous.

What were your treatment options and what did you choose?

Because the cancer was early and localized to the duct, I was able to have a lumpectomy. I had the surgery less than two months later and didn’t need chemotherapy, but I did have radiation.

My doctor offered me tamoxifen to help prevent recurrence, but after studying up on the medication and its side effects, I chose not to take it. I decided to be very vigilant with follow-up to make sure I remained healthy.

What was your support system like at this time?

I didn’t have much support at home, but my mother and my best friend were by my side the entire way. Someone was with me each time I had a radiation appointment.

I also knew that I had an entire community of faith-filled people praying and fasting for me. My church family was positive and supportive. They sent me scriptures, uplifting messages and voicemails, and did what they could to keep my spirits positive and upbeat.

Did you undergo genetic testing for BRCA genes?

After my first diagnosis, I had genetic testing and tested positive for BRCA2. A doctor recommended that I be proactive and have ovaries and both breasts removed, but I absolutely wasn’t ready for that. It wasn’t a fertility consideration; it was that I wasn’t ready to experience all the symptoms of menopause that would come from that.

Can you describe your breast cancer recurrence?

Seven years later, I was diagnosed with breast cancer again. Just like the first time, I hadn’t felt a thing. An annual diagnostic mammogram and ultrasound detected the breast lump. The time around, my doctors acted urgently, and my oncologist told me that this cancer was more aggressive.
I elected for a double mastectomy. I had chemo for the entire summer, and my remaining ovary was removed.

The second diagnosis completely knocked me off of my feet. I couldn’t speak for weeks. I was just going through the motions of surviving because I couldn’t believe this was happening. I blamed myself, questioned previous decisions, and went through several stages of denial. I had complications after surgery, followed by aggressive chemo. Ultimately, it was one of the hardest years of my life. At the same time, I was a single mom and had to continue to take care of my two high-school-aged children.

After being in remission for 4 years, what are your words of advice to women who are currently being treated for breast cancer?

If you have any belief in a higher power, this is definitely the time to tap into that. I could’ve lost my mind during that period, but my faith and upbringing kept me rooted in strength.

I only exposed myself to good, positive things at that time. This isn’t a period in your life where you need negativity around you. Cancer isn’t just in the body--it’s all around us. It’s mental. In order to stay positive and keep going, you need people around you that will help you do that.

What are your feelings about Breast Cancer Awareness Month?

I celebrate BCAM--I just got my nails done yesterday with pink ribbons on my fingers, haha!

My only gripe about BCAM is that I don’t think it’s enough. We don’t only need to think about breast cancer in October. Especially in lower-income neighborhoods in black communities, we don’t talk about it enough. I just wish there was more information out there so women could be proactive and not reactive.


HEATHER

How old were you when you were diagnosed with breast cancer?

It was 2011 and I was just 35 years old. I accidentally found the lump while I was getting my one-year-old dressed for bed. When I felt it, it was the size of a golf ball, and I immediately froze.

It was a Saturday. I worried all weekend, then went to see my OBGYN. Initially, she thought it might have been mastitis related to breastfeeding, but I’d stopped breastfeeding a while ago. After a mammogram, ultrasound, and pore biopsy, it was confirmed. I had Stage II triple-negative breast cancer, a very aggressive form of breast cancer with fewer treatment options.

How was your case treated?

A lumpectomy wasn’t an option. At the time I was diagnosed, the lump was just over 2 cm. Six weeks later, when I had a double mastectomy, the lump was 4.9 cm. I then had 16 rounds of chemo, followed by radiation. It was pure hell.

What types of support did you have during your journey?

At first, everyone around me was very supportive--coworkers, family, friends...but I was in treatment for 7 months. Midway through, I noticed people started to disappear. Friends and coworkers didn’t know what to say to me--someone so young who was so sick--and so they avoided me completely.

Eventually, I met other women with triple-negative breast cancer through support groups and networking on Facebook.

I tried my best to stay positive, and my biggest source of motivation was my two kids. But it was hard. For people who have friends or family in their life who are very sick and you don’t know what to say, don’t think that you have to say anything. All I wanted was someone to talk to. Just be there with a listening ear.

Considering your age at the time of diagnosis, did your doctors discuss your fertility with you?

At the time, I had a 3 year old and a 20 month old. Fertility was discussed very little. There was only a brief conversation about it.

My surgeon who performed the mastectomy mentioned that the treatment I would have after surgery would completely ruin my fertility. Then, he added that I already have two kids, so “that shouldn’t matter.”

Did you undergo genetic testing for the BRCA gene?

Due to the severity of my diagnosis, I was tested for BRCA1 and BRCA2 shortly after. In 2015, I did the full 17-panel genetic test. My doctor recommended this test since there were more genes known now than back in 2011 when I first had it done. I tested negative for all the genes.

What are your feelings about Breast Cancer Awareness Month?

I have mixed feelings about BCAM. I do celebrate it, but I hate the oversexualization of what is actually a serious, potentially life-threatening illness. Slogans like “Save the Tatas” and “Save the Boobies” upset me.

At the same time, I do take advantage of BCAM to educate young women that breast cancer can happen to them too. I also appreciate awareness efforts that raise money when the money is actually used for research.

Resources for women battling breast cancer

If you’re currently experiencing breast cancer, hopefully these brave women’s stories have let you know that you’re not alone. No matter your diagnosis, your personal network, or your lifestyle, there are resources available that can help you through this time.

For reliable and accurate information on breast cancer, check out these websites:

To find support groups, visit CancerCare. You can also use Facebook to find groups that meet your needs.


Megan Nichole

Megan Nichole is a public health pharmacist, healthcare copywriter, and multi-passionate millennial blogger. Connect with Megan on LinkedIn. https://www.linkedin.com/in/megannicholebrown/

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