Imagine that, instead of partying your way through your 20s, finding your career path, figuring out WTF investments are and maybe even living alone for the first time, you found out that you had cancer.
Though breast cancer is relatively rare among young women, it does happen—and it presents unique challenges from a diagnosis and treatment perspective. Of all the breast cancers diagnosed in Canada in 2013, 4 percent occurred in women under the age of 40. And according to a 2015 Rethink Breast Cancer report, “young women have more aggressive forms and stages of breast cancer,” which means they often require more aggressive forms of treatment.
But younger women face non-medical challenges, too, like dating, fertility and body image, and these concerns can be just as difficult to handle. In fact, a 2014 study published in the journal Cancer found younger women are more likely than older women to experience depression, body image, anxiety, sleep, marital dissatisfaction and fear of recurrence, which indicates, “young survivors are at greater risk for long term quality of life problems than survivors diagnosed at a later age.”
There’s an important conversation to be had about young women and breast cancer, and it’s one that we’re not really having. So, FLARE reached out to young women across the country to tell us what it’s really like to be a breast cancer patient in your 20s and 30s. Here’s what they had to say.
On being diagnosed (and misdiagnosed)
Kathleen Llamzon, 31; Mississauga, Ont.
I had cancer in me for over a year before getting officially diagnosed with stage IIIA invasive ductal carcinoma. (Breast cancer is divided into stages—0 to IV—then further divided into A, B and C, depending on tumour size, whether cancer cells are present in your lymph nodes and whether the cancer has spread.) It was a cold, snowy morning in March 2014. I was 27.
In January 2013, I went to my routine annual check-up with my family doctor and we both felt a small lump in my left breast. She sent me for an ultrasound and then, when the results came back, for a biopsy. But when I went to the hospital to have my biopsy, the radiologist refused—he said I was young, healthy and had no family history, so instead, he booked me for a follow-up ultrasound six months later. I trusted his opinion and continued on with my life.
When I had the ultrasound that June, my lump had significantly increased in size. But the radiologist refused to do a biopsy for the second time—he told me again that I was young, healthy and had no family history, and that the lump was caused by “fibroids.”
But it kept growing rapidly, and it was starting to hurt. So I went back to my family doctor, who sent a referral to a surgeon regarding my condition. I met with my surgeon in January 2015, and when I saw the look in his eyes when he saw my breast, I knew I had cancer.
He didn’t say it, because we both needed the biopsy to confirm the diagnosis. He sent me for a rushed biopsy and said, “If the radiologist refuses your biopsy again, you call my cell phone immediately.” But this time, the radiologist finally did the biopsy. He even took some tissues out my lymph nodes. That’s how I knew my cancer was spreading.
My tumour turned out to be estrogen and progesterone receptor-negative and HER2 positive, which means estrogen and progesterone don’t encourage tumour growth, but a protein called human epidermal growth factor receptor 2 (HER2), does. In the past two and a half years, I’ve had a double mastectomy, 14 months of chemotherapy, six weeks of radiation and five reconstructive surgeries.
The hardest part was telling my parents, my sister and my closest friends. They were all devastated, shocked, angry, sad, upset. They kept asking why, and how this could have happened. The night I was diagnosed, I was in my room pretending to be asleep and I will never forget the heartbroken cry my mother made. After that, I promised myself I’d fight this cancer of mine with laughter and smiles.
But I still can’t help but think that if had been taken seriously the first time I went to for a biopsy, my diagnosis could have been a Stage I rather than Stage IIIA.
On protecting your fertility
Sarah Dreger, 32; Calgary
The first time I was diagnosed with breast cancer, I was 25. I had surgery four days later and shortly after that, I met with my oncologist, who told me I had a 50/50 chance of losing my fertility with the chemotherapy I would be receiving. My husband and I decided to go to the fertility clinic to see what our options were at the time. There is usually a six- to 12-month wait to even get in to see a fertility specialist, but we were able to get in right away because of our circumstances. We decided to start the process of freezing our embryos (instead of just my eggs) because there’s a higher success rate.
The whole process felt like an added stress on top of everything else I was going through. It was a lot of needles and medication, which I had to take in a short period of time to get the healthiest and greatest amount of eggs possible.
IVF cost us about $10,000 and it wasn’t covered by AHCIP [Alberta Health Care Insurance Plan]. We were newly married, and I was just starting my teaching career, so we were struggling with how we would pay for everything. Luckily, a friend put together a fundraiser for us, which raised money to help cover a portion of the IVF, and my parents helped covered the rest. We ended up with nine healthy embryos. It was comforting knowing I had those embryos in case my fertility did not return.
Two years after treatment ended, we decided to try for a baby. After a year of not getting pregnant, we started the IVF process in the summer of 2013. I had to have injections and medication for almost two months and, since my cancer is estrogen and progesterone receptor-positive, which means both of these hormones support tumour growth for me, I was a little scared taking progesterone pills. The fertility clinic reassured me that it was for a short period of time and it was safe.
We found out in September that our IVF was not successful. We were pretty upset, as it was a long and overwhelming process, but decided we would start the next round of IVF in December when my body had some time to recover. Then, November came around and we found out that we were pregnant naturally without any IVF assistance! Our first son, Owen, was born on July 10, 2014.
I got pregnant almost immediately once we decided to start trying for baby number two. However, four days before Christmas, when I was 32 weeks pregnant, I went to scratch my underarm and felt a lump in the exact place I had found my lump eight years before. My heart dropped. I just knew that my cancer returned. My son, Nolan, was born on January 15, 2017 and three weeks later, I started chemotherapy.
I feel like cancer has changed me into a better person; to be more patient and not get upset at the little things. To breathe and enjoy every single moment and live life to my fullest. I can now just sit and watch my kids play for hours and hours. I put my phone down more and enjoy being in the moment. We go out every day and do something fun, because life is too short to spend sitting around. Thinking about the future too much gives me some anxiety, so instead I try being present in every situation possible and hold onto all the special moments that come our way.
On how breast cancer affects your finances
Jamie Willett, 30; St. Catharines, Ont.
I found my lump in 2014, when I was 26, but I wasn’t actually given a diagnosis until 2016. From 2014 to 2016, the lump grew from approximately 12 mm by 21 mm to approximately 85 mm by 85 mm. When I was finally diagnosed, my doctors said I had stage III, triple negative (which means it doesn’t respond to estrogen, progesterone or HER2), invasive, breast cancer that had started to spread. Due to the size of the tumour, I needed to have chemotherapy first and I needed to start as soon as possible.
I’m a high school supply teacher with credentials in music, English and dance. I’m also a server at the Rainforest Café. Going through treatment meant I had to miss work and, ultimately, job opportunities and career advancements. Because chemotherapy lowers your immune system, I wasn’t allowed to work as a server—though they did give me modified work to do instead. But unfortunately, this modified work always came with a pay cut.
I was glad to have an outlet to take my mind off treatments, but not being able to serve definitely hurt my bank account. My husband had to take on the full mortgage and more of the bills while I was sick. I also wanted a wig, which isn’t covered by OHIP [Ontario Health Insurance Plan]. My husband’s plan only reimburses a certain amount of the cost, which, for a real hair wig similar to the length of my own hair, was approximately $1,800. I ended up getting a synthetic wig, which is still expensive but not nearly as pricey as a real hair wig.
And when it comes to the treatment, OHIP pays for the actual chemo drugs that are administered at the hospital, but does not cover some of the extra drugs that you need to take as well. I was lucky to have friends and family that were very supportive and could help out from time to time with groceries, transportation, and parking, but I’m only now starting to build my savings back up.
On body image
Lindsey Finkelstein, 23; Montreal
I first noticed a bit of pain and a small lump in my right breast in February 2016, but at the time I didn’t think anything of it. Then, that fall, I noticed what I thought was a beauty mark on my nipple. But when I touched it, a scab fell off and discharge seeped out. Since then, it’s been a wild ride. I was diagnosed in October, I had a double mastectomy in November, I got engaged in December, I began 16 rounds of chemotherapy in January, and finally, I finished chemotherapy at the end of June.
After my double mastectomy, as I was waiting for the pathology results to come back, I kept questioning and second-guessing if I made the right decision. I wondered if maybe I didn’t need to do such an extreme procedure. But when my pathology results came back, I was told that inside my tiny A-cup breast were six other malignant tumours—I couldn’t believe what I was hearing and I was in complete shock. I could have immediate reconstruction, but only on the non-cancerous side (left), as the cancerous side depended on my lymph nodes. On the cancerous side, the disease had spread into my lymph nodes, and I needed to have radiation on top of my treatment plan. Since the radiation could kill the implant that they had put in, they held off on reconstructing the cancerous side. So right now I have one implant and one expander and will go for another surgery later this year.
Losing my hair was the thing that I was most worried about. That was probably my first question after I was diagnosed! My family was so supportive. Just before my second round of chemo, I went to Ottawa for the weekend with plans to shave my head on Monday. But as Saturday approached, I knew that I couldn’t wait—there was no way, my hair was coming out on its own. So before heading back home to Montreal, my brother and I shaved our heads together and my sister cut off about thirteen inches–she totally wanted to shave it but there was no way that I would let her. One organization that had helped me tremendously was LGFB (Look Good Feel Better). After attending their workshop, I felt more confident in the different ways I was able to style my little-to-no hair with scarves, wigs, hats and toques. I’m actually now a LGFB ambassador.
Way before I was diagnosed with breast cancer, I was diagnosed with anxiety and depression due to a past eating disorder. I have always hated my body and I am only able to realize now that I should have loved it sooner. Now, my body looks different and it acts different. Back then, I was always putting myself down, but I somehow missed out on the most crucial and beautiful point—my body is, and always was, fighting to keep me alive.
On having a newborn baby… and breast cancer
Jeanette McNalty, 32; Weyburn, Sask.
I first noticed a large lump in my left breast when I was about seven months pregnant. Finally, in December, I remembered to mention it at one of my prenatal appointments with my obstetrician. She examined it and commented that it was large; she estimated that it was 2 to 3 cm. So, we made a plan to have an ultrasound. My daughter was born on January 11, and just over 24 hours later, I was having the ultrasound on my breast.
A lucky turn of events meant that, on this particular Monday, a radiologist who specializes in breasts was working at the general hospital, instead of her usual base at Pasqua Hospital in Regina. With great compassion, she told me that even though she was very sure that the lumps could be explained by lactation, she wanted to do a biopsy. “I don’t want to be the one who missed breast cancer in a 29-year-old,” she said.
On February 2, we got the call that no one wants to get: the bad-results phone call. The obstetrician told me, with total and genuine shock, that pre-cancerous changes had been found in the cells in my biopsy. She explained that I had ductal carcinoma in situ, or Stage 0 breast cancer, in which the cancerous cells are localized to the ducts and have not invaded the surrounding breast tissue.
On February 25, when my daughter was six weeks old, I had a total mastectomy and sentinel node biopsy, which is when a lymph node is extracted and analyzed to see if the cancer has spread. I also needed chemo and, because my tumour was HER2 positive, Herceptin, a drug that blocks the tumour from receiving signals from the HER2 protein to slow, or even stop, the tumour’s growth. In the end, I had four chemotherapy treatments and 17 Herceptin treatments—one every three weeks for a whole year.
I felt like my world was shattered. All I could think was, “What if I don’t get to watch my daughter grow up?” I had been very anxious about becoming a mother and had already experienced the usual “can I handle this?” anxiety and quasi-depression that accompany the postpartum period, and now I wondered how I would cope with being a mother and a cancer patient at the same time.
Going through treatment with a newborn was exhausting. After my mastectomy, I continued to breast feed from my remaining breast as long as I could. So, for the weeks following surgery, she would wake in the night, my husband would bring her to me (because I wasn’t allowed to lift her) and I would feed her, and then he would return her to the bassinet.
But once I learned that I would have to have chemotherapy, I had to stop breast feeding her. And at the time, that felt like the worst thing in the world, mostly because it wasn’t my decision and because it felt like I was missing out on such a special motherhood experience.
Having cancer as a new mother, and as a young woman, has changed the way that I think about a lot of things in life. At this point, my husband and I are fairly convinced that if we can survive the experience of cancer treatment and a newborn at the same time, there is nothing we can’t handle.
On making your relationship work
Dory Kashin, 31, Toronto
I had been with my boyfriend (now husband) for two and a half years when I got the news: I had stage IA, estrogen receptor-positive cancer.
Our relationship was pretty serious when I was diagnosed—we were living together and we had already decided that we wanted to be together long-term. But going through this experience with him really brought us closer together and solidified that decision.
I was pretty independent throughout my treatment. I still prepped my meals and made my juice and tried to keep busy. I also had a very large support network of family and friends, which took some of the weight off of his shoulders. But he was always there and saw it all… like when he helped clear my drains (long tubes which are inserted into the breast or armpit to collect the fluid that can build up in the space where the tumour used to be) every four hours after my double mastectomy. But thankfully, this didn’t affect our relationship. The “romance romance” was just on hold for a bit.
It was really important to me that we maintained our normal intimacy throughout my treatment, and we did. However, things were different! It was hard not to let my mind wander to how I looked—my scars, no nipples and no hair. I didn’t feel good about myself right then, so how could he possibly be attracted to me?!
I think we got through it by being very open with one another. I was very honest with when I needed him around and when I needed space. There were no games. If I was lonely or needed someone around during the day I would just say, “I think I need you around today, do you mind taking a day off work?” He also treated me like me—not “cancer me.” He didn’t treat me like a sick person or shy away the first time I removed my shirt and exposed my scars. His reactions to my situation had a profound impact on me and helped me feel normal.
And we laughed a lot! We made jokes and light of a very shitty situation and it helped both of us get through the hardest days. We also still maintained a normal life—we hung out with friends, celebrated small achievements along the way and also carved out time for one another.
I know we are the lucky ones, though. I met so many women at support groups and in passing who going through the exact same thing as me and their relationship just couldn’t make it through.
On “getting back to normal”
Cassandra Umbriaco, 32; Oakville, Ont.
My breast cancer diagnosis came at a time in my life when everything seemed to be falling into place. I had just returned from a dream vacation in South Africa. I loved my job. I had purchased my first car. I was 28 years young and loving life.
When my doctor told me that I had breast cancer, I was confused for a moment. It was like an out-of-body experience. I looked at him, shook my head and said, “But I’m only 28?” I’m sure it sounded more like a question than a statement. That was the moment the reset button was pressed on my life.
For a few years after my double mastectomy, I called myself deformed. My implants looked great—my plastic surgeon did an incredible job. But I was different. I didn’t look normal. I was something “other.“ Certainly not like regular 28-year-olds. There were many moments when I would be in a room with women my age and think, “They’re beautiful and perfect and whole. And I’m not.” The first time I purchased a bra at Victoria’s Secret post-operation was extremely difficult—the barrage of sexy perfection was too much to handle.
I thought I would always feel that way.
But as time has gone by and my internal and external wounds heal, my thoughts on my body have evolved. It’s a work in progress. I still feel different, but not in a bad way. I no longer feel deformed. I had a double mastectomy, reconstruction and hysterectomy (I have the BRCA1 genetic mutation) all within two years. Those are key markers of femininity and sexuality. It’s a lot to process. But, when doubt creeps in, a beloved friend reminds me that I am—women are—more than their breasts.
From the minute I was diagnosed and that reset button was hit, my version of normal changed. For six months, I was immersed in the cancer world. Constant medical appointments. More tests than I can count. Stitches. Needles. Blood. Endless pain. That became normal. When I went back to work, that became normal, too. Until one day I could travel again. I had the stamina to have a busy Saturday with mom. I could attend a bachelorette (even if I didn’t have the energy to go to the bar). And on and on the new normal is built.
The one constant throughout all versions of my normal have been my family and friends. They knew me then, they know me now and they help me to know myself.
If you’re a young woman with breast cancer, check out Rethink Breast Cancer for resources, advocacy and a network of other women who can understand what you’re going through.
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