TNBC Day - Sarah's story

We are sharing stories from our Triple Negative Breast Cancer community to raise awareness about this subtype on Triple Negative Breast Cancer (TNBC) Day (3 March). Sarah from Hull shares her story of receiving a de novo secondary diagnosis of ER+ HER- in 2019, and then finding out in 2023 that her cancer had flipped to TNBC.

 

When were you diagnosed with SBC? When did it flip and what led them to finding that out?

I was first diagnosed with ER+ HER- breast cancer in 2019 when I found a lump in my right breast. Initially it was thought to be primary and my breast surgeon talked about a lumpectomy and a couple of weeks off work. Unfortunately pre op scans showed patches of cancerous and pre-cancerous cells so they gave me a mastectomy and ANC. When the pathology results came back it showed cancer in 23/31 lymph nodes so they proceeded to staging scans which showed I had secondary cancer to the liver. 

I found out that the cancer had flipped in February 2023. I had been going to have a 2nd liver resection and a pre-op PET scan showed lymph nodes in the chest wall and abdomen. I had read on the 2nds Together group about someone whose cancer had flipped so asked for a biopsy. It came back as triple negative.

What are the challenges of living with TNBC?

I don't know if any of the challenges are specifically from having TNBC. I was worried at first as when I was first diagnosed it would have been a lot worse....treatments had advanced so I was reassured by that. My oncologist didn't seem troubled either.

Where do you get support? What places or groups or forums?

I get support from the local secondary breast cancer group I helped to set up - Second Friends - and the Make 2nds Count online group 2nds Together. I like being able to meet people in person but there is a wider range of experience in an online group. I did have the pleasure of getting to know people on the first ever Make 2nds Count retreat in Edinburgh and at last year's inaugural Secondary Breast Cancer Summit in Liverpool. I also have the support of the breast care nurses at the hospital.

Have you ever enquired about a trial or been on one?

I have spoken to the Clinical Trial Nurses at Make 2nds Count and received useful information but haven't taken part in a trial as yet.

Do u have any advice for someone newly diagnosed with secondary TNBC? Should people push for biopsies to see if it's flipped?

I would give the same advice to anyone. Be positive (whenever you can), get support and live as well as you can for as long as you can. At the Summit there was lots of positivity given during the Triple Negative research slot so new things are on their way! 
I definitely think that anyone who has had progression on a targeted hormone therapy paired with an oestrogen blocker should ask for a biopsy. It might not have flipped but at least the check has been made and they are not on a treatment which may never have a chance of working.

How do you stay mentally strong? What helps you cope on the tough days/what brings you joy?

My husband and my son are what keep me strong and my desire to be with them as long as I can. It's not always easy on our boneshaker of a rollercoaster but I manage. My family and friends, running my local Beavers colony, yoga, exercise and fresh air, going to the seaside, keeping busy generally but now balancing it with rest to manage fatigue.

Is there anything you wished more people knew about TNBC?

I would have said that there were less treatments but I am encouraged, from what was laid out at the Make 2nds Count Secondary Breast Cancer Summit in July 2024, by the fact that it is a time of positivity as more drugs such as Trodelvy are being developed and can be used concurrently. 

What's the one thing you want people to know about you beyond your diagnosis?

I once auditioned for Blockbusters and 'How do you solve a problem'! 

 

Thank you Sarah for sharing your story. If you want to find out more about TNBC, visit our information page or visit: https://www.ukcharityfortnbc.org/