37-year-old Atieh Behravesh was diagnosed with Invasive Lobular Carcinoma (ILC) in February 2019, just a day before her long-awaited trip to Mexico.
Invasive lobular carcinoma is a type of breast cancer that begins in the lobules of the breast. Despite frequent checkups, ultrasounds and mammograms, her cancer went undetected for a long time, until it progressed to stage 4. She shares her story today in honour of breast cancer awareness month.
“It’s been almost 8 months since I was diagnosed with ILC,” says Atieh. It all started in August 2018 when Atieh felt something hard on the upper side of her right breast. Atieh had been getting ultrasounds to monitor her breasts every six months since her late twenties. “When I was in my twenties, after finding a lump in my breast it was found that I have a fibrocystic breast and doctors recommended that I get an ultrasound every 6 months to monitor the size and shape of the cysts,” Atieh recalls. Originally from Iran, Atieh and her husband, Masoud moved to Canada in 2015. And she continued to monitor the lumps in her breast regularly in Calgary. The results always came back benign, everything looked good and she continued to get an ultrasound until 2017 when she got pregnant. “Unfortunately, the pregnancy didn’t last long and I had a miscarriage at 8 weeks. It was the worst day of my life. I felt anger, guilt, grief and depression for a long time. We tried to conceive again but after months of trying my doctor did a sonohysterogram and found that I had a big fibroid outside of my uterus that had to be removed surgically. The surgery was scheduled to take place in 6 months, in October.” says Atieh.
It was around the same time that she started to notice changes in her right breast. She booked an ultrasound and a mammogram. Atieh recalls how painful the mammogram was for her, “My specialist back home told me that I should never get a mammogram because of my fibrocystic breast. But I chose to do it anyway. And it was so painful!” But both the mammogram and ultrasound results still came back normal.
“In October, I had my surgery to remove the fibroid. The surgery distracted me for a while but I still felt like there was something wrong with my right breast. It got to a point where it started to get obvious. The size of my right breast had changed and it looked completely different from my left. I went back to my GP and asked for another checkup. But the results were the same. My GP insisted on monitoring my breasts but by this point, I was so frustrated. I had over 6 ultrasounds in the span of 2 months and none of them showed anything. The operators could see that something was wrong but had no way to prove it.”
After the rough year, Atieh had been through, her husband decided to book them a vacation to Mexico.”I was pretty depressed about everything that had happened to me in 2018, so my lovely husband booked a vacation for the two of us to Mexico for February. We were both so excited! We needed this vacation.” says Atieh.
By the end of January 2019, Atieh was referred to a breast surgeon. “On the day of my appointment, I distinctly remember the moment the doctor walked in. He looked at my breasts for 30 seconds, became red and left the room. You can imagine how I felt at that moment. What happened? Why did he have to leave the room? What did he see? He came back in 5 minutes and said he was quite concerned and wanted to do a biopsy right away. But they were short on staff that day so I was asked to come back in a couple of hours to do a mammogram which would be followed by a biopsy the next day.”
“So we went and I got a mammogram done again. It was less painful this time, the operator walked me through some breathing exercises which made so much of a difference. The results came in, and like all the other times, it was the same. Dense but nothing concerning.” The next day, Atieh got her biopsy done. “I was pretty calm and sure that it’s nothing but a simple infection. When the physician was taking my sample, she asked me if I had a kid, I answered no but I might try again after my vacation. And she sighed. Even though she didn’t utter a word, that sigh said so much to me. But I tried not to think about it.”
A week later Atieh was asked to come in to discuss the results. She was told that the Doctor wanted to meet her as soon as possible, “So I booked it for February 6th. The day before I was to fly to Mexico. My husband and I had decided that regardless of the news we would receive, that we would still go on our trip. I’ve been in an out of check-ups since August. If it could wait for 6 months, it can wait 10 more days.”
“But we were wrong. ‘I am sorry, it’s cancer’, the doctor said. I was told that it was stage 3, my lymph nodes were affected and that I needed to start treatment immediately. We couldn’t wait till after the vacation, it was life-threatening. And all I could think of was, “Where were you in the last 6 months? Why didn’t they identify this earlier?”
“And at the moment, everything changed. We got out of the room. My husband told me, ‘we will take it out together. We will fight back and I promise I will take you to the best vacation ever after this is done. Just wait, be strong and positive like always. You have me here. You don’t need to be worried about anything. Let me help you, I know we can do it. You are my whole life and I will do anything for my life.’”
“So we got started. We cancelled our flights. I talked to my manager about what had happened and requested that I used my vacation time to figure out the next steps. I met with my oncologist and was diagnosed with ILC, ER PR positive and Her2 negative breast cancer. This cancer type hid from normal screenings like ultrasound and mammogram. And the only way to detect it is MRI and/or biopsy. That’s why they couldn’t find anything earlier.”
Atieh’s first day of chemo also happened to be her Canadian citizenship ceremony day. “While I was at the ceremony I received a call from my oncologist. I was told that my cancer had spread to my bones and was now at stage 4. I was with my mom -who came from Iran to support us – and my husband at the time. They couldn’t hear what my oncologist was saying, but they knew just from watching me. While everyone was singing the national anthem and beaming with pride at the ceremony, my family and I cried. My mom asked to take at least one picture with the Canadian flag but we both burst into tears. She was trying her best to control herself and just hugged me and whispered ‘Everything will be alright, I promise’.
We went to the Tom Baker right after, to get started on my first round of chemotherapy. I later found out that while my husband went upstairs to meet with the oncologist, he had fainted outside the office. And my mom had developed shingles on her back. This was what I was worried about. No one should be sad because of me, especially my family. I wanted to see them happy.”
With the help of their nurse navigators, Atieh and her husband slowly managed to accept their new life.
“I started to go to the Look Good Feel Better Workshop at Wellspring and learnt how to manage my appearance during chemo. I joined the breast cancer supportive care organization, where I met the angle of my life. Dr. Taylor who helped me and my husband so much, she helped us understand all the medical terms, she calmed us down, answered all our questions and supported us emotionally.”
After 4 rounds of chemotherapy, the shape of Atieh’s breast became normal and a CT scan showed that the cancer had not spread to any of her vital organs. This indicated that the chemotherapy was working. So they decided to continue chemotherapy for two more rounds. “I did a genetic test and found that I have a PMS2 genetic mutation. This essentially means I have a higher risk of developing colon, ovarian and uterine cancer. But in my rare situation, it led to breast cancer. Somehow, it ended up being good news as studies showed that this mutation was found to be responsive to immunotherapy. So if chemotherapy or surgery doesn’t work, I have immunotherapy as an option. On the other hand, having this mutation also increases my risk of recurrence.”
The next step of Atieh’s treatment was a double mastectomy. “It was obvious that I had to get rid of both breasts. I had to decide if I wanted immediate reconstruction. It was a tough decision for me. But after a week of sleepless nights, talking to my oncologist and family, I decided to stay flat for a while. And what a smart decision it was! I’m so happy that I chose to do that.” says Atieh. After the double mastectomy, Atieh underwent 16 rounds of radiation. “Despite the burnt skin, I am so happy and grateful for my body for being so strong and withstanding all the intense treatments it was put through.”
Throughout her cancer journey, Atieh has been using her social media platform to talk about her cancer publicly She shares her story both in English and Farsi and advocates for breast cancer awareness.”During this tough time, the positive energy of my family and friends, especially the unconditional love and support of my husband, keeps me strong. I wanted to use my Instagram page to show myself and others that although there is no cure for my cancer, I can live my life perfectly. I want people who are busy with the ups and downs of their lives to know that their health is the number one priority. They should get to know their bodies and never forget to get checkups and do self-exams regularly.
“No matter how old you are, how healthy your lifestyle is and what your gender is, this may happen to you or your loved one too. It can happen to anyone. If you know your body well, you can detect it early and save your life. And I want to tell all of the warriors that you are not alone. Do not feel guilty! You haven’t done anything to call on cancer. There are bad days that you think will never go away, but there are good days, and you can live your best life on those. Just be happy and take your chance to look at life in a way that you never thought of. You are stronger today than you were yesterday. This too shall pass!”
Atieh is a stage 4 breast cancer thriver who will be starting targeted and hormonal therapy next. You can follow her journey on Instagram.
Thank you, Atieh, for sharing your story with the Alberta Cancer Foundation.
You never know whose life you could change simply by talking about your own, share your story today.