Rare Cancers Awareness Day: Two Canberra women share their stories
Posted on
Inflammatory Breast Cancer. Have you ever heard of it?
If you haven’t, that’s not surprising. According to Cancer Australia, while 13,000 women and 100 men are diagnosed with breast cancer each year in Australia, of these only 1–2% will be diagnosed with inflammatory breast cancer.
But while Inflammatory Breast Cancer (IBC) is rare, it is also a ‘rapidly growing’ form of cancer, which means early detection and intervention is crucial. To mark Rare Cancers Awareness Day, held annually on 26 June, we’re sharing the stories of two Canberra women with IBC – Kelee (right) and Carolyn (left) – in the hopes of spreading information and awareness about this largely unknown cancer.
Kelee
My name is Kelee, I’m 48 and living with stage 4 Inflammatory Breast Cancer (IBC). I live in Belconnen with my husband, two daughters (21 and 14), one overly affectionate Staffy and a very spicy cat.
I work as an Executive Officer at the University of Canberra, however, I am currently on long-term leave whilst having treatment, and planning on returning in a part-time capacity in the near future.
When were you diagnosed and what symptoms did you have before diagnosis?
I was diagnosed towards the end of 2023 at the age of 47. At the time of diagnosis, I was fit and healthy and generally feeling really well. Around mid-November, I woke up one morning and thought my left breast felt weird.
I started to get ready for work and in the shower did a self-breast exam. I didn’t feel any obvious lumps, but the bottom of my breast felt a little bit heavier or fuller. My first thought was it was just premenstrual hormone boobs, but I couldn’t shake the feeling that it was strange that it was only in one breast.
Over the course of the morning at work, I began to feel more and more uncomfortable in my bra, so I made an appointment to see my GP the following day. My GP was immediately concerned and sent me straight from her office to have an ultrasound and then referred me to a specialist for more scans and biopsies. During that time, my left breast became even more swollen and my nipple started inverting.
In under two weeks, I ended up being diagnosed with oestrogen positive bi-lateral breast cancer, IBC in the left breast and Invasive Ductal Carcinoma in the right breast and began an aggressive treatment plan of chemotherapy, a bi-lateral mastectomy, endocrine therapy and radiation therapy.
What do you wish people understood or knew about IBC?
With breast cancer being the most common cancer in Australian women, most people have never heard of IBC. As well as being rare, IBC is also very aggressive. It only ever gets diagnosed at stage 3 or 4 because it isn’t easily detected through routine mammogram screening, so most people only find out once they develop outward symptoms.
IBC does not present as a defined lump that can be felt, rather, the cancer cells invade and block the breasts lymphatic system, trapping lymphatic fluid that then causes swelling or inflammation. As a result of this swelling, it is often misdiagnosed as mastitis or infection, delaying time-critical treatment.
What should people be doing to make sure they pick up any signs or symptoms as early as possible?
Get to know your breasts, like really get to know them, what they feel like and what they look like. Most women know to feel for lumps, but because IBC isn’t lumpy, you need to look for any skin or nipple changes such as harder/thicker skin, orange-peel skin, spots, purple or red rashes or nipple inversion.
Also, look at your whole breast (use a small mirror), look in different lights, standing/ lying down and at different times of the day. It turns out that I did have some skin changes, but they were on the underside of my breast where I couldn’t see it.
Because IBC is so aggressive, seeking immediate medical treatment is crucial. If you notice any changes of the breast, either big or small, see your GP and insist on both a mammogram and ultrasound (especially if you don’t have any lumps). I was lucky that I had an amazing GP who advocated for me, but don’t be afraid to advocate for yourself and insist on a thorough examination.
Although IBC is often missed in mammograms, routine screening is still essential and now available to women in the ACT from 40 years (instead of 50). Not having a family history of breast cancer isn’t a reason to be complacent either, as 90% of all breast cancer diagnoses in Australia have no genetic links. You’re also never too young to start breast exams, statistically, IBC is more likely to occur in younger women.
There are so many experiences of breast cancer that are shared universally (shout out to my awesome network of ‘Breasties’), however, when you have a rare cancer, there are some things that can only be understood by someone else going through the same thing. That is why meeting Carolyn has been such a comfort and inspiration to me since we met earlier this year.
There is currently no cure for stage 4 IBC. That can be pretty scary, but I get through by rocking a mix of positivity and radical acceptance, and with the love and support of my husband, daughters, family and friends. They have held me, driven me to appointments, made meals, taken my daughter away on holidays, walked with me, took me for coffee or lunch, messaged, called or checked in and probably most importantly, made me laugh! I’d also be remiss to not shout out to my GP, the team at the Icon Cancer Centre Canberra, my surgeon and my breast care nurse who take such great care of me.
It’s in my nature to be positive so I like to think of myself as ‘living’ with cancer. I don’t have a big bucket list to check off, instead I appreciate the small things in life and spending quality time and laughs with the people I love. But if someone wanted to gift me a trip to Europe I’d totally take them up on the offer!
Carolyn
My name is Carolyn. I am 50yrs old. I live with my husband and two boys aged 6 and 17yrs. I was a primary school teacher in the ACT, before retiring on invalidity after my cancer diagnosis.
When were you diagnosed and what symptoms did you have before diagnosis?
Early Last year I was diagnosed with triple positive and inflammatory breast cancer. I first noticed some strange tissue on and around my nipple. I realised it had been uncomfortable to lie on in bed for 2 days. I saw my GP straight away. She referred me for a mammogram but unfortunately it took 4 weeks to get in for the scan. During this time, the cancer progressed very rapidly and despite many people (including doctors) telling me I’d gotten it early, it metastasised to my bones and lymph nodes in several places.
What do you wish people understood or knew about IBC?
Everyone thinks triple negative is the worst type of breast cancer but most people have never heard of inflammatory breast cancer which is particularly aggressive. Only 1 % of breast cancers are inflammatory. And most of those are triple negative, so nobody suspected IBC (not even my oncologist) except for me as I noticed changes every day.
What should people be doing to make sure they pick up any signs or symptoms as early as possible?
I did not have the tell tale symptom of a red rash until I presented in the oncologist office. But I did have the ‘orange peal’ skin that my youngest noticed before I did, as it was underneath the breast. There was some swelling, a thickening of skin and some spidery bands of white tissue that moved around and came and went. The nipple became inverted. Sometimes I could actually feel the tumours vibrating gently when I was singing.
Interestingly, my younger sister, father and mother were also diagnosed with cancer around the same time as me. Yet so far, there is no genetic cause identified. My prognosis is pretty depressing (19%, 5yr survival rate for IBC, compared with most other breast cancers of around 80%), but somehow I have always held a positive view that I will survive and heal from this.
I have found great support through an integrative oncology clinic in QLD which has strengthened my hopes and given me direction and action I can take. Although I am lucky that my oncology medical expenses have been mostly covered by medicare and private health cover, the supplements, medications and treatments recommended from the integrative center are not. Over the year, it will probably cost me about $50,000.
Although I absolutely loved teaching, surprisingly, I have not missed it for a day. It was a major source of stress which I knew I needed to eliminate in order to get well. I am grateful for the support and kindness people have shown me, from cooking a meal for me, sharing a cuppa, going for a walk together, to looking after my little one. It makes a huge difference, especially when the rest of my family live far away. Similarly it has been invaluable to connect with other women with breast cancer.
Through this experience, myself and many around me have been encouraged to live in the present more. Making more time for family and holidays and connection with people. I am grateful that my treatment team have happily worked around my lifestyle choices.
Recently I embarked on a 3-week trip of a lifetime to France and Spain with my mum and two sisters. We visited Lourdes, Paris, and Barcelona and completed a 12-day hike on the Camino Trail, making the most of spiritual and healing opportunities whilst creating lasting memories.
