Clare

Clare was diagnosed bilateral breast cancer at the age of 50.
I started having yearly mammograms at the age of 41 due to my significant family history. These were always reported as clear. I was never told I had extremely dense breast tissue even though this was reported in each and every one of the nine reports written and placed in my medical notes after my annual screening. It was never shared with me.
In March 2018, I noticed an unusual thickening on my right breast. My Mum was recovering from breast cancer for a second time and I did not want to wait for the two weeks to be seen by the hospital as I was too anxious. Instead, I paid for private ultrasounds a couple of days later.
It was the private sonographer who told me about the issues of dense breast tissue and how it raises risk and can mask tumours on mammogram. She saw two suspicious areas, so I went back to the hospital where further mammograms were performed. Again, NOTHING was seen.
However, after explaining what I had heard from the private sonographer, my team agreed that my mammograms did indeed show I had dense tissue. So, then they performed ultrasounds and picked up what they believed was a small early cancer on the right side but saw nothing worrying on the left.
Biopsies were performed on the right and due to the extreme density of my breast tissue it was agreed that I should have an MRI. I will never forget receiving a phone call from the hospital whilst I was on holiday with my husband and daughter. I was told I needed to come back to speak with my breast surgeon as soon as possible. So, my family and I packed our suitcases and headed home. I was informed the MRI showed what they believed to be tumours in both breasts.
I had further biopsies on both sides, and these confirmed I had two Grade 2 Er+ Invasive Ductal Carcinomas.
Two weeks after surgery, my pathology was back, and this suggested all the cancer had been removed on the left but I did not get clear margins on the right. I also had micromets in my sentinel lymph node. The following day I went back in for a re-excision. Unfortunately, when the pathology report came back it showed further scattered cancer cells. It was suggested I could have a single mastectomy but my surgeon advised me that she was not sure how they would screen my remaining breast effectively so I should consider a double. Due to the size of my invasive ductal carcinomas 5.2 cm on the right and 2 cm on the left with an additional 0.5 cms of DCIS, the micromets and my age (50) m it was decided I should undertake 6 months of chemotherapy before any further operations.
I had a very grim time with chemo which resulted in me finishing early due to the worsening peripheral neuropathy in my feet. In January 2019, I had a double mastectomy with immediate DIEP – a 12 1/2-hour operation! A further 0.2 cm of residual IDC was removed on the right and an unexpected area 0.4 cm of DCIS was removed from the left. I was finally cancer free.
I feel passionately that I should have been informed of my extreme breast density and what it meant in terms of raising my risk in developing breast cancer and reducing the sensitivity of mammograms. Both dense tissue and tumours show up as white. I will continue to advocate for the rights of people to be educated about the issues surrounding dense tissue and to be informed if they are found to have dense tissue on their mammograms.

Please watch Clare tell her story https://youtu.be/4G9Jhwyj2os