Linda's Story - "When Eli was 8 weeks old, I was officially diagnosed with Breast Cancer"

22 Nov 2022

My name is Linda and I was diagnosed with grade 3 breast cancer (ER/PR- HER2+) in February 2022. I was just 36 years old.

I first noticed my lump in around August/September 2021 when I was around 30 weeks pregnant. I mentioned it to my midwife but was advised that it was likely a blocked milk duct. I trusted that if it was anything to worry about, they would have referred me for further tests. However, when the lump (which felt like a little tictac on the inner top part of my right breast) didn’t go away, I told every midwife and Dr that I saw about this lump. By the time my little boy was born, I’d had this lump for at least 3 months. When Eli was about a week old I had a blood clot come out into his mouth while I was breastfeeding him. Again, I mentioned it to the midwife that came out to my house daily and they just again stated it was a really stubborn milk duct and to apply heat and massage it. I was feeling pretty defeated by this time and thought that maybe it must be me that was overreacting to this lump.

I hadn’t really thought it was breast cancer as I was pregnant and expected to have issues with my milk ducts but something just wasn’t sitting right. I had a lot of misinformation about breast cancer looking back and if I knew what I know now, I absolutely would have spoken up because so much of what I was being told was just wrong.

At Eli’s 6 week check-up I had managed to get an appointment with my GP (this was all during Covid so appointments weren’t easy to get) and I thought I would mention this lump one more time. My GP immediately referred me to the hospital for further investigation (at minimum an ultrasound and biopsy), she knew exactly what she was looking at. After the ultrasound and the fine needle biopsy I was in covid isolation and received a call that the biopsy came back suspicious for malignancy. My world fell apart. I cried for 2 weeks straight because I knew how long I had this lump and it wasn’t looking good. The next week I went in for a core biopsy, biopsy of my lymph nodes, mammogram, MRI, CT scan and bone scan.

When Eli was 8 weeks old I was officially diagnosed with breast cancer. So there I was with an 8 week old and a 2 year old, no job (I had just been made redundant) and my poor husband was having some health issues at the time too. I spent a lot of time beating myself up about my diagnosis... was it something I ate, something I did? I had NO family history AT ALL on either side of my family. However, due to my age my specialist referred my for genetic testing. Due to the lack of family history I remember joking with the genetic counsellor about the likelihood of it coming back positive for a BRCA mutation..... sure enough it came back that I had the BRCA1 mutation. I found it interesting to learn that not many people who have HER2+ cancers are BRCA1 carriers but here I am – I like to be rare 😊 My genetic counsellor recommended I link in with Pink Hope – it has certainly been helpful to know that I am not alone.

I completed 16 rounds of chemotherapy (4 x AC and 12 Taxol) and a double mastectomy. I am currently dealing with heart failure, a blood clot in my lung and an infection in my mastectomy (24/7 antibiotics for 6 weeks). Once my health is back on track I will be doing 25 rounds of radiotherapy and 14 rounds of Kadcycla. 

I really want to remain cancer free so I plan to increase my fruit and veg intake and include more exercise (I think most of us struggled with that through the pandemic). I have never smoked or touched alcohol and I would consider that my eating habits pre-cancer were pretty good.

I remember watching a TV show years ago that was talking about BRCA mutations and I said I would not hesitate to have a mastectomy to reduce my risk of cancer if I knew I had that gene mutation. Little did I know that I actually did have that mutation. I had always had large boobs so it took a little getting use to after my mastectomy. It really challenges you regarding how you think your husband will feel about it all and how womanly you will feel but ultimately, its a lifesaving procedure so you cant let yourself worry too much about that side of things.

I have shared my story openly on my social media. I chose to do this because many people my age would think that this won’t happen to them. In reality, it can. Most of us in our 20s and 30s are living life – getting married, starting careers, having babies – we don’t stop and think that this could happen to us.

There are women out there like me that have cancer symptoms but because they don’t think it could be cancer, they don’t advocate for themselves enough to have their symptoms investigated. It is a known fact that young women are diagnosed later and with more advanced staged cancers because there is no screening available to this age group. It is only through knowing the symptoms, realising that this can happen to you and advocating for yourself that you will get your diagnosis early unless you have a really good Dr. I can not emphasis enough the importance of pushing for any symptoms to be investigated. It could save your life. 

I have created a project (The BEAT Movement) targeting midwives and Drs that deal with pregnant women to ensure they hear my story and the story of so many other women I have met through this diagnosis, so that next time they have a pregnant patient presenting with potential cancer symptoms, they have a procedural guideline to follow to get it investigated.