My story began at the age of 24; I found what I thought was a lump in my right breast. I thought it was going to be nothing serious, especially since I did what we all do in a moment of panic and Googled what it could possibly be. I didn’t feel overly worried and assumed it was probably just a cyst. I brought it up at my next doctor’s appointment and, since my breasts were quite large, my doctor had a hard time feeling what I was talking about. After assuring my doctor that I felt something, my doctor sent a referral to the breast health clinic to have it felt by another professional.
My next appointment felt very much like my first doctor’s appointment. I felt like I had to convince the doctor that a lump was present. At first, I was dismissed and was told that it felt “normal”. I was told that my breasts are large and dense, and that all they feel is breast tissue. I was told “you are too young to have breast cancer”, and not to worry. After having to push for it to be properly looked at, they ordered an ultrasound to convince me it was nothing. That ultrasound quickly turned into scheduling a biopsy. My biopsy results came back as atypical cells, which would require a lumpectomy. Once the golf ball sized mass was removed, the pathology report confirmed it was cluster of intraductal papillomas (benign tumors). I was told that the cluster had a chance of turning into something cancerous, and that it was a good thing it had been removed. The doctor told me that I should start going for mammograms in my late 30’s but did not offer any additional advice.
Fast forward to October 2016, when I was 28 years old. While I was doing my monthly breast exam, I noticed changes to my breast; I was certain that the scar tissue from my surgery was changing.
My doctor didn’t take the situation seriously and told me it felt like normal dense breast tissue. He thought the changes could be an infection and prescribed me some antibiotics. After I was done taking the antibiotics, the changes hadn’t gone away. I scheduled an appointment for November 2016 to find out the next step, as the antibiotics did not work, and I was still having nipple discharge. He took a swab of the discharge and those results also came back clear. My doctor told me the changes could be from when I had breast-fed my daughter 5 years earlier. I was told I was fine, and not to worry.
That spring (March 2017), I still felt uneasy as the nipple discharge was still present with every monthly self-breast check. I did some research and I found out that I could self-refer myself to the breast health clinic. Since I had a lumpectomy done previously, I was lucky that I was able to see my doctor within a couple months. At my appointment I felt brushed off and was told it “it really only feels like scar tissue”. Due to the fact that there was something the first time, she, hesitantly, decided to order an ultrasound to ease my concerns. Again, I was reminded that due to my age, it should be nothing. I am thankful that I was diligent to do my self-breast exams after finding my first lump. I knew it had changed and I was positive something was slowly growing. Thankfully, I knew my own breasts and pushed for answers.
On June 30th, 2017, I went for my ultrasound. On the spot where my lump had been 4 years prior, they saw changes that appeared to be more than just the scar tissue they had assured me it would be. They immediately performed the biopsy; 5 core needle pokes. I was informed by the doctor performing the biopsy that it looked like the same thing as last time: a cluster of papillomas. A few weeks later I had an appointment to get the results, which came back again as atypical cells. Since that is never a diagnosis they leave inside the body, it was recommended I have the lump removed. So off I went for another lumpectomy, which was done on Aug 23rd, 2017.
On September 12th, 2017, things took a dreadful and unexpected turn. I got the phone call from the doctor telling me the lump was breast cancer, and not a benign abnormality. She called to tell me I should bring someone with me to the appointment, as it wasn’t going to be an easy conversation.
I was only 29 years old, and my Diagnosis was DCIS (ductal carcinoma in situ- is non-invasive breast cancer. The breast cancer was stage 0, but it was high grade (grade 3), meaning it was on the aggressive side. I was very lucky that my DCIS was removed with clear margins during my lumpectomy because it gave me time to think about my options.
After a few appointments and an overload of information, I was given two choices:
1. First radiation, then take tamoxifen for 5 years. Both had possible side effects and meant a yearly exam to monitor my breasts. However, due to my age, I was being told that my breast tissue was dense which meant it would be hard to see any changes and also being told I’m a unique case by most off the doctors/surgeon, this option didn’t give me a guarantee I felt was good enough. Plus, if the cancer did come back, the side effects of radiation would make reconstruction very difficult. They also couldn’t guarantee that more cancer wasn’t growing elsewhere in my breast.
2. A nipple-sparing bilateral mastectomy with direct-to-implant reconstruction. This meant no screening needed as the breast tissue would be removed and I would not have to be on hormonal therapy. With a mastectomy there is usually revision surgeries involved, which meant it could be a longer healing recovery and more surgeries ahead.
This was a choice I didn’t want to make. But I had to, and so I did, with sadness.
After talking to the plastic surgeon, being told this was a unique case and rare that papilloma would grow back after clear margins and taking my percentages and everything else into consideration, I decided on the second option. I wanted to live a long life, and watch my kids grow up. For me this option felt like the best way of making sure I was doing everything I could to make that happen.
On October 19th, 2017 I went in for a breast reduction (my breasts were too large for the skin to survive if cut at the same time as having implants put in). I recovered from that surgery with a few complications. Since the next step depended on the healing of the scar tissue around my nipples, I then had to wait 3 months to determine the date of my bilateral mastectomy.
After consistent follow-ups and close observation, the doctors decided it was best to do a nipple-delay surgery first, to give me one more month of healing. This gave me better chances of my nipples surviving the mastectomy.
Then February 27th, 2018 came around and it was time for my mastectomy. The surgery was completed, and I stayed overnight for observations. There have been a number of follow-up revisions and complications since then, which would make for a total of 7 surgeries in a matter of 3 years.
So why am I opening up about my journey? It’s because I feel young women are told, way too often, by doctors that we are too young for breast cancer even when we know there has been a change. I also know far too many women who, at my age, do not perform self-breast exams – nor do they know how!
I’m glad I listened to my gut at a young age, noticed the changes, and pushed to get answers. My first changes happened when I was 24, then again at 28. I am telling my story in hopes that it gets other women talking and taking care of themselves, despite what they are often told.
As young women we cannot take the same preventative measures, the way older women can. We have to be our own advocates. We have to rely on our own knowledge and awareness of our breasts.