After treatment for lobular breast cancer, Fiona wanted to challenge herself. She got involved with Breast Cancer Voices and is now using her experience to help other people diagnosed with breast cancer.
Can you tell us about your diagnosis?
I was a full-time, very fit general practitioner and GP trainer when I started to wonder if I could feel a thickening in my breast. After a few months, I saw a GP, but he couldn't feel anything, so I then decided to go privately.
My mammogram was normal but a fantastic radiographer listened to me, did an ultrasound, and took core biopsies. All 4 [biopsies] showed invasive lobular breast cancer. The wide excision procedure that followed was not clear at the margins, so I then had a mastectomy. I went on to have FEC-T chemotherapy and about a year later, a DIEP flap reconstruction.
The hardest time for me was afterwards. I felt quite alone and struggled with full-time work. I eventually went part-time, which made coping with my job easier, but 6 years later my husband and I decided to take early retirement.
How did you first get involved with Breast Cancer Voices?
I’d used Breast Cancer Now during my treatment, and I still have contact with an amazing group of ladies who I made contact with via the forum threads. We all started chemotherapy at about the same time.
Therefore, when I had more time on my hands after retiring, I started to look at Voices to see what I could do. I had a strong feeling of wanting to help other women with breast cancer, and to try and increase awareness of the disease.
The first position I applied for was with City University Radiography Department and the humanising healthcare project. I'm involved with interviewing prospective students. And I’ve also talked to the students about what it’s like to be a cancer patient, to try and make them think more about how we need to be treated.
I then got the position as a Moving Forward volunteer, again via a Voices advert. I love doing this. It’s great to see the ladies - who often turn up feeling quite alone and uncertain - leave the course feeling supported and with some hope of moving on.
Why did you join the science strategy committee?
Once my chemo brain had reduced a bit, I started wanting to find something that would give my brain a challenge too. So when I saw on Facebook, and then on Voices, the position of patient representative on Breast Cancer Now’s Scientific Strategy Board, I applied. I was interviewed and got it!
Once I got the position on the SSC, I started to attend meetings where they discuss how current research trials are going and discuss which new trials they’d like to consider for funding.
Recently, I’ve read through 8 ongoing research projects to see what they’ve found and how they want to continue, and I gave my lay opinion on which should be funded. It certainly helps to have a scientific background.
Can you tell us about the symposium?
The most exciting thing I’ve done is attend the UK Interdisciplinary Breast Cancer Symposium in Birmingham. There were over 800 delegates, all involved with either the clinical or research side of breast cancer management.
There were also 25 patient advocates there. We all met the night before the conference started, and it was lovely to be with other interested ladies who’d had either a primary or secondary breast cancer diagnosis. For me, it was great to meet other women from Lobular Breast Cancer UK as this is the type of cancer I had.
We all got to attend any lectures we wanted, with often 3 or 4 going on at a time. The topics discussed were wide-ranging, but the strong theme is triple negative breast cancer, secondary breast cancer, late recurrence and dormancy in oestrogen-positive tumours, and breast cancer prevention.
What does it mean to you to be a Voice?
Being involved with Voices has done just that, it has given me a voice. Without Voices, I’d be doing none of the things I’ve mentioned above. I now feel I have a purpose again. I feel like it’s the next stage in my life. I’m getting brain stimulation again from the SSC, but I’m also telling the researchers what we feel. They’re great at their work but often make incorrect assumptions about how a patient feels.
Also, I'm helping pick future radiographers and educating them in their training. The Moving Forward course not only helps other women, but it helps me too. It’s a great feeling to help others who’ve been through such a life-changing illness.
You can become a Voice too
If you’ve been affected by breast cancer, and would like to use your experiences to help others, you can become a Breast Cancer Voice like Fiona. You’ll have lots of opportunities to shape breast cancer research, care and support across the UK.