“I was determined to learn to love my new body. Just a few weeks of healing, I thought, I’d get a prosthetic and be back to normal again.”
The gift my cancer gave me
How a cancer diagnosis helped me accept my body
For me, radiation therapy came a year into my treatment. I received my diagnosis on the first of February 2017, after a hectic week of being rushed around having tests. I knew before the GP told me what the answer was: the urgency told me everything. Knowing but not knowing was the first of many challenges I was to face.
One of the biggest challenges has been dealing with having major changes to my body thrust upon me, and radiation was a big part of that challenge. I’m going to walk you through the story of my diagnosis and treatment in that context. The team at Icon Springfield (then ROC) helped me to maintain a positive mindset and to feel better about what was happening to me.
A little bit of background: since adolescence, my breasts have been a big part of how the world has reacted to me, and how I have presented myself to the world. I was one of those girls whose body matures way ahead of the rest of them. I was happily oblivious to my body as a child but naturally energetic and active. The way I remember it my boobs arrived suddenly, without me noticing, although of course that’s not true. I just wasn’t paying attention.
My first bra, age 12, was a C cup. I overheard my grandmother joking to my mother that my cup runneth over, and was mortified. I was a D cup age 13. I was teased so much about getting a black eye when I ran, I gave up sports.
I was a DD cup at age 14, when I was sent to an all-girls school. I thought everyone was being friendly, coming to say hello. I later found out they were all flocking to see the new girl with big boobs. They nicknamed me Dolly Parton. I was grateful: another girl similarly blessed was called Community Chest.
It’s really no exaggeration to say that getting boobs, and discovering how the world reacted to them, changed my relationship to my body. Instead of being cheerfully oblivious, I became ashamed and judgemental, but nonetheless attached (haha). Facing the prospect of losing one or both of them was one of the hardest parts of that initial diagnosis.
Pictured: Robyn Evans with partner Gary Ellis.
Let’s go back to the beginning…
I first found the lump in November 2016 while I was in the UK visiting relatives. I travelled with my Mum to a family wedding she wanted to attend. Mum’s not well, and my sister and I thought it might be the last trip she’d get to make, so the whole trip was wrapped in worries. Then, just hours after the wedding, my uncle, the father of the groom, died suddenly from a heart attack. I had to perform CPR.
Mum and I stayed on to help my aunt cope. Because his death was so sudden, there was a lot of talk about inherited conditions, and what various members of the family had died of. I was reminded that my grandmother died of secondary breast cancer—and that I had hardly checked my breasts since I’d had my first mammogram 2 years before. One morning while I was in the shower, I checked and found the lump.
It was too much to deal with that on top of everything else. I decided I’d leave it until I was back in Australia. By the time we got back it was nearly December, and we had visitors arrive from overseas. Before I knew it; it was January, and one morning in the shower I found it again.
I didn’t even have a GP I liked, so I asked on Facebook for recommendations!
The poor woman, I went with a laundry list of complaints, and after she’d written me prescriptions and blood orders for all of that I added on…”by the way, I think I’ve found a lump”. One of the complaints was depression and she’s since told me that she dreaded have to tell a depressed woman that she has cancer! So: as funny as it sounds, cancer seemed like the least of my worries.
I was diagnosed with an invasive stage 3 estrogen positive cancer. The tests to see if it had metastasised found a lesion on my spine, so I had to have a night in the PA to have further tests. That was one of the more harrowing parts of the whole experience: not only did I have the worry that I had cancer in my spine and that I would therefore be stage 4, there were no beds in the breast ward, so I was put in the bowel ward for the night.
As well as hearing waaay too much information about the other people on the ward’s conditions every time the doctors did rounds, one patient was a very elderly lady with dementia who couldn’t understand why she was there and who kept taking the adult diaper off and leaving it places, creating a huge fuss for the poor nurses.
Thankfully, the lesion was found to be benign.
I had a lumpectomy and axillary clearance at Ipswich Hospital. I was thrilled with the outcome of my surgery, you could barely tell the difference between my breasts. They told me after the operation that the margins weren’t clear, and that they recommended a mastectomy, but that I should have chemo first. I paid attention only to the second half of that recommendation…I’ll come back to that.
I was referred to the Mater Cancer Centre at Springfield, for my chemotherapy. I felt incredibly lucky to be referred there: not only was it across the road from work, and 5 minutes from home, it was one of the few places where public patients could have cold cap therapy. I was aware of that therapy because a friend in the States who had breast cancer a few years back had it, and is now a rep for one of the companies that make them.
It was really important to me in those early days not to be ‘cancer girl’. I hated the idea of everyone knowing what I was going through, and perhaps taking pity on me, or treating me different. Going into chemo, I thought if I kept my hair and kept working, I could pretty much carry on as normal—Ha!
Pictured: Robyn with her uncle, aunt and mum.
When I found out the cold cap therapy doesn’t work for all patients, I started dying my hair a really bright purple. I think I figured if people were going to be looking at me it would be because I was being weird, not because I had cancer.
The cold cap therapy did allow me to keep most of the hair on my head, but I guess it’s no surprise to any of you that I was eventually forced to accept my new identity as ‘cancer patient’. Even still, I would tell people “I’m being treated for cancer” rather than say “I have cancer”. In all honesty, I found it hard to believe I could really die from it, but it’s so common there were plenty of reminders that it does.
During the 6 months of chemo I convinced myself that the chemo would have taken care of the cancer cells found in the margins and that I wouldn’t need further surgery.
It took a while to get to see the surgeon again. I kept being seen by registrars, some who had no role in my treatment, and I could not accept their word that I needed a mastectomy. I really did not want to lose my breast. When I finally saw him, and he persuaded me it was necessary, I timidly confessed that I was ‘quite bothered’ by the idea of being lopsided. That was a massive understatement. I dreaded the thought: I was absolutely positive I would prefer to have no breasts than one. Unfortunately, he was dismissive. He gave me a cursory glance and said “Your breasts aren’t that big, you’ll be OK”. That was a blow.
I was made to feel it was urgent to remove the breast and pressured into signing a consent that day. But I was deeply unhappy with the idea of losing a single breast. If I had to, I wanted immediate reconstruction, so I could be ‘normal’ ASAP. I was so bothered I withdrew my consent, and paid to see a private surgeon for a 2nd opinion. She referred me to a surgeon who works in the public system, another woman. She was very kind, and very thorough: I think my initial consultation was nearly 90mins long.
Although I went into the consultation wanting to have immediate reconstruction, she persuaded me that might not be the best option, and referred me to radiation for a consultation there. I was given the choice of having radiation or not, as only 3 lymph nodes were found to be involved.
After the team at the Mater showed me the survival rates with and without radiation, I consented to that treatment pathway, accepting that meant all prospect of reconstruction with an implant was out of the question. My surgeon therefore recommended I only have a single mastectomy. She told me I don’t have enough of a belly to create two new breasts using the flap reconstruction method (all my female friends think this is the best compliment any woman could receive, which says a lot about our body image). So: just before Christmas 2018, I had the operation my first surgeon had wanted to do, but I was much more mentally prepared for it. I decided my scar looked bad-ass, and insisted on showing visitors the result.
Then I went to ROC to get ready for 6 weeks of radiation therapy, and found out that I wouldn’t be able to wear a bra for the duration of the treatment, or a couple of weeks after.
It sounds silly but this was hugely confronting. I don’t think I’ve left the house without a bra on more than about twice in 30 years. I mostly wore them around the house too. I’ve been trussed up like a Thanksgiving Turkey every day of my adult life…and now they expected me to go to work without a bra for 2 months?!?! Despite the fact it was summer in Ipswich, which is always a few degrees hotter than Brisbane, I wore scarves over baggy tops with long sleeves for the whole time—thank goodness my office and the clinic are air-conditioned.
My radiation oncologist and the nurses and technicians, and even the reception staff at ROC really helped me feel like I wasn’t a freak. They scheduled most of my treatments for late afternoon, which meant I could arrange my work day so I could go home straight afterwards and slather myself with more of the lotion they’d given. I was also referred me to a lymphodeoma specialist physiotherapist nearby, so I had someone to help me regain range of movement and strength in my arm and shoulder. The radiation therapists put up with me peppering them with nervous questions every time, and everyone greeted me like I was a friend they were pleased to see. It genuinely felt like a safe space.
One day there was a power outage due to a storm, I think it was a Friday. That’s when I found out there was a full-time medical physicist on staff to look after the machines. I find that incredible and wonderful. It’s my favourite counter to the anti-expert brigade: this world we live in is incredibly complex. Even where we have created machines that do miraculous things that save lives, we need incredibly smart people who are willing to invest years of time and effort into developing highly specialised knowledge to operate and run those machines.
The gift cancer has given me is a new relationship with my body. I was right about being lopsided: it sucks. I may yet just have the other breast removed: 14 hours in surgery just to fill out a blouse sounds excessive, but who knows, I’m still young enough to have some vanity. But I have come to an acceptance and appreciation of my body that I didn’t have before, and the care I have received has helped me to achieve that.
Having care locally, so I didn’t have the stress of traffic and parking, and so I could maintain a semblance of normalcy, was a huge factor in helping me get through these challenges: that’s the pragmatic aspect. Knowing I had a team of expert professionals on my side and interested in my well-being added an incalculable extra element to my ability to cope, and my optimism about my survival.
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