Nicola Tennent is an incredible woman, Studio Pilates Franchise Owner and breast cancer survivor whose journey through one of life’s toughest experiences became a catalyst for change. During this period, she found solace and strength in Pilates, a practice that unbeknownst to her, became instrumental in her recovery.
Inspired by the impact it had on her life, Nicola decided to pivot careers, transitioning from her law job to embrace her new mission: helping others heal and strengthen their bodies with Pilates. Nicola is the proud owner of Studio Pilates in Dunedin NZ, where she shares her passion for the practice with the community.
On the 9 year anniversary of her diagnosis, Nicola generously shared a bit about her experience in the hope it raises awareness and action to take control of your body.
How old were you when you were diagnosed with Breast Cancer?
41
Did you have a family history of Breast Cancer?
No, cancer didn’t feature in my family history. Inflammatory Breast Cancer (IBC) doesn’t ordinarily have genetic links, but mostly affects younger women like myself, and is very rare representing only 1-5% of breast cancer cases, so it’s often misdiagnosed.
What stage was your diagnosis?
Stage 3B which means that the cancer was in my breast and had spread to lymph nodes. IBC is always diagnosed and treated as stage 3B or higher due to the aggressive nature of the cancer.
How was the cancer detected (BSE, annual mammogram, self-check)
Cancer was not detected in my mammogram six months before. The largest tumour grew to 7.5cms by the time I was diagnosed.
My breast felt hot to touch, was red, and enlarged. My armpit also felt painful and sore. I went to the doctor who misdiagnosed me with mastitis, put me on antibiotics, and sent me for an ultrasound. The ultrasound was inconclusive due to the density of the breast tissue. Density of breast tissue and thickening skin is also a marker of IBC.
After a week of pain, I saw the doctor again, who reconfirmed the misdiagnosis, changed the antibiotics, and sent me for another ultrasound, which was also inconclusive.
After 3 days of agony by which time I was unable to bear wearing a bra, I saw another doctor for a second opinion. She sent me straight to the hospital where I was diagnosed based on the clinical markers and a core biopsy a few hours later.
Did you regularly self-check prior to the diagnosis?
Yes, however IBC does not present as a lump, rather painful redness, orange peel skin, and thickening of the tissue.
Tell me a bit about the treatment process?
The gold standard treatment for IBC is different from some other breast cancer treatments. It includes chemotherapy first, then radiation therapy, then targeted therapy to reduce the tumour(s). Because IBC is cellular rather than presenting as a lump, lumpectomies are not performed and mastectomy surgery and lymph node removal is required.
I did not have radiation therapy as I had other complications on the affected side (a heart condition and pacemaker), but would have had to and would have had to have pacemaker surgery, had the treatment not responded.
Chemotherapy was very very hard and at times I felt like I couldn’t go on. A survivor in an IBC support group had told me that “dying is worse than chemo” so I sort of clung to that fact and that I was following the gold standard treatment which other women had done and survived.
If anyone can be lucky having cancer, I was very lucky having the IBC variant (HER2+) diagnosis which responded very well to Herceptin (targeted therapy). I was also very lucky to be living in Australia while I had treatment, as my native New Zealand didn’t offer Herceptin treatment publicly at that time. And I feel like I was lucky to have been quite insistent about the diagnosis and knowing something was wrong so that it could be treated early.
I began to lose my hair after the second chemo treatment and the day it began to fall out badly, I got it all shaved off. It didn’t feel like a milestone or anything exciting, it was a step into the unknown. Losing hair really hurts the scalp so I started amassing a burgeoning collection of baseball caps and headscarves, which I preferred to wigs.
Getting the lab letter after my mastectomy where it stated there were numerous tumours and lymph nodes which had been cancerous, including one which had been 7.5cm long, and now no evidence of disease was mind blowing. I still have that discharge summary and read it over and over again to make sure it really said what it said. That was around 8 years ago.
Who or what helped you the most during this period of your life?
Studio Pilates. I started doing reformer Pilates just after chemo and through my numerous surgeries. The team at Ashgrove, especially my lovely instructor Poppy Sibthorpe nurtured me patiently, always ensuring I was being challenged and slowly increasing my movement and fitness, but not putting my body under too much stress or pain. I had never really felt comfortable in group exercise settings and had a lot of complications with surgeries and fatigue to deal with, but the team’s anatomy training and passion for their clients’ well being totally changed my opinion. I had found my place where I belonged and where the team always had my back even when I was feeling low or fatigued.
This fantastic experience was a huge inspiration for me investing in a Studio Pilates franchise and opening my doors in Dunedin. Many of my clients comment about my ‘You Belong Here’ sign which is an ethos that I absolutely love and my whole team embraces.
Did you have a support network during this time?
My beautiful partner and my family. My partner took on the role as my unofficial secretary, answering calls for me and making sure I had what I needed, and jotting down questions for the doctors as I experienced memory loss throughout my treatment. My Mum in New Zealand went and got her head shaved in solidarity with me.
The doctors and team at the Royal Brisbane and Women’s Hospital who looked after me so well and arranged rides from my home to the ‘country club’ (my name for the cancer unit with the private exit and entry) and genuinely cared about me.
The IBC networks on Facebook, I was desperate to find out what treatment was really like and what other women’s experiences were, and ask any question as it popped up, not simply read a brochure or understand things in a general sense. Could I have children? Would I have pain forever? Would it come back? Would my hair be the same? How will I live without breast reconstruction? What should I tell people at work? And many more intimate and scary questions.
Were there any programs or services offered that helped you?
Breast Cancer Australia broadly helped me although in 2014 they knew little about IBC and couldn’t put me onto other women who had IBC. I relied upon the IBC Facebook groups which had mostly US membership. Through this, I did end up meeting three women in Queensland who had IBC but tragically they passed away.
How did this change the course of your life?
It has been the spur that enabled me to look at the lifestyle business owning a franchise. In the broadest sense it’s made me less afraid to try things and take what others would perceive to be not the safest option, but what I think of as finding my own path – my true north.
Weirdly, I think it has enabled me to know my body better and trust how I’m feeling at any given moment, as I pushed and fought for that diagnosis and knew that something wasn’t right.
I do feel bittersweet, as well. Like I am lucky that I’m still here, but there is sometimes some survivor’s guilt around that, too. Why did I survive and all these wonderful mums, wives, daughters, sisters, partners not make it?
What’s one piece of advice you would like to share with all women reading this regarding their own health?
Trust your body and your own experiences and feelings. Ask questions if something doesn’t feel right. Yes, medical professionals are experts, but you are the expert of your own body.
