Current treatments for TNBC can cause dramatic changes to your appearance. As a group, many of us felt completely unprepared for the changes we were to face.
We are sharing our experiences here so that you have an idea of what to expect and – importantly – to show that you will come through the other side.
You may find some of our experiences and photographs confronting so please read this section in your own time, when you feel ready. We hope, by openly sharing our experiences, you won’t feel so alone when you experience your own changes to your appearance. And we want to reassure you that you will get through it.
Stormy’s story
My treatment involved 2 months of chemotherapy followed by 3 months of Taxol. I also had a lumpectomy and radiotherapy.
When I started chemotherapy, I lost my hair very quickly. My mouth was more sensitive and I had a few mouth ulcers. My skin became sensitive and I developed neuropathy in my fingers and toes, which led to me losing a few nails. During Taxol treatment, I also lost my lashes and eyebrows.
My left breast is a bit firmer and slightly smaller than the right due to the lumpectomy. I have a few small scars but they are easy to hide!
The radiotherapy left the skin on my chest looking sunburnt and I had loss of hair on my armpit.
At first, the change to my appearance made me feel like I’d lost my identity. Everything that makes you who you are and shapes your face is stripped away.
However, it gave me the opportunity to try wigs and new styles. I found it so good to be able to chuck it on and look like a normal person, even if I didn’t feel like one. While I was a cancer patient, I didn’t “Look like a cancer patient”. There are also some fantastic scarves and hats if wigs aren’t your thing!
A few months out of treatment, I’m feeling okay. My hair is growing back and my skin healed within about a month of radiotherapy.
One month before being diagnosed (July 2021)
Shaved head – 2 days before chemo starts (September 2021)
First wig – makes a huge difference (September 2021)
One month into Taxol, you can see the lashes are starting to be affected (November 2021)
Two months out of treatment and 6 months out of finishing chemo – hair is on the way back! (July 2022)
- Allow yourself to fall apart from the shock and grief that you will have with your appearance change. It’s okay to lose it and let it all out. I think this is incredibly important. Then… make a plan.
- Shave your head before you start chemotherapy – it saves the trauma of watching longer hair fall out. Plus it’s a good way to ease into seeing what you’re going to look like.
- If you’re having radiotherapy, do follow the guidance to care for your skin. It will help it heal.
- Get yourself some brow stencils and pencils if you feel uncomfortable about having no brows
- Know that IT IS TEMPORARY, and your hair will grow back, you will get your life and energy back.
- This may sound weird, but thank your body for getting you through treatment. I didn’t appreciate what my body could do to help heal me through this time in my life. I found this helpful to stop looking at myself like I was flawed, ugly, etc.
- Exercise moderately. Exercise helped so much with treatment and fatigue. Also helps your mental health – highly recommended.
- Please try to remind yourself that you’re not alone. You might feel it because everyone around you might be living their normal life, but you are not alone – I promise.
Alex's Story
I’ve always had SO MUCH HAIR. It was shoulder length, and thick. Shortly after realising how serious TNBC is, I realised I would be on strong chemo and I would probably lose my hair. I am a proactive person and I knew straight away I would cut my hair short and, at the first sign of loss, shave it off.
My hairdresser fit me into her busy schedule to give me the first chop. I went with a much shorter style and it was truly cathartic. Having never really liked my hair that much, I really liked the new style.
It’s brutal that it was only a few weeks later, after my second chemo, that I started to shed an incredible amount of hair. I could have made several wigs out of the hair I shed, and it just kept going. Standing in the shower with clumps of hair accumulating around my collarbones and shoulders, I felt a bit of panic. Every time I rinsed it off, more fell out. I thought I was going to have to stand there in the shower until all the hair from my head was gone. I was truly startled by how profound the hair loss was.
I need to acknowledge that losing my hair often feels difficult. I didn’t get used to seeing myself bald in the six months that I had no hair.
I borrowed some complimentary wigs from The Cancer Council, but I never wore them. I felt most confident in fabulous scarves that I would match to my outfit, and a big pair of earrings.
Occasionally I would go out without headwear and I would forget I had nothing on my head until I saw my reflection, or caught some of the looks from passers-by. It’s interesting, and you may notice it yourself now I’ve mentioned it, but people wouldn’t stare at me. It was the opposite. I would see people look at me and quickly look away, afraid to appear like they were staring. Ironic. That was a big lesson for me. Now, when I notice myself doing it, I make eye contact with the person and give them a polite smile. Not a sympathy smile, but acknowledgment that they are human too and we are both just people trying to do life as best we can.
The most important part of my day was drawing my eyebrows on. Hardly anyone saw me without them. I was hospitalised at one point with an infection, and the Doctors came through on their rounds really early. I was still sleeping, so I was in my pyjamas, no head wrap, and no eyebrows. I felt so small, weak, helpless. I had to hold back tears after they left as I got myself straight out of bed and into the bathroom to redraw my brows back on. It’s really hard to draw on your face when your eyes are welling up.
Right before shaving my hair off. I quite liked this cut
Smiling, although I was feeling a little beaten down immediately after shaving my hair off.
I committed to getting some photographs of how I really looked at the end of my treatment. It’s still hard to look at this person, I don’t recognise her at all.
Chemo curls six month post chemo.
Actually thrilled with my new body
Following treatment, my hair started sprouting after about six weeks. I did feel like a chia pet, so the scarves were still in rotation, but it quickly got to a ‘buzz cut’ stage and I was finally relinquished of the scarves and headwraps, which are now in the bin!
My eyebrows grew back patchy, so I made the decision to get microblading done once my neutrophils were recovered. (If you have the time and money, I would recommend getting this done before chemo starts).
This change was all transient. At the time, it felt like forever, and when you are at rock-bottom, it is completely understandable that this sort of thing eats away at your resilience. Now, it already feels like a distant memory, and my hair has grown back in a cute little afro with ‘chemo curls’. I love it and might leave my hair short forever now.
Onto the more permanent change. Receiving neoadjuvant chemo meant I had plenty of time to choose my surgery, and I ended up opting for a double mastectomy. This was mostly for peace of mind, and my surgeon was onboard with the decision. However, I spent most of my chemo expecting to have an immediate reconstruction. Quite late in the process it was revealed to me that I would most likely have radiotherapy and therefore the plastic surgeon required me to stay flat for twelve months. This was another blow at the time. I took the time to process this, and realised it was more important to get rid of the cancer. The double mastectomy still seemed right. Part of my processing was looking at my outfits and figuring out I could wear a singlet under anything low cut, or stick to loose fitting clothing. A lot of my wardrobe would still work. Also, there is always prosthetics.
Katie's Story
Hair loss was the first and most noticeable change for me. I had 8 cycles of chemo over three months and my hair loss started by the 2nd cycle and lasted the duration of treatment. Not only did I lose the hair on my head, but I saved a fortune on the monthly body waxing! I didn’t completely lose my eyebrows until the 6th cycle of chemo.
I rallied my girlfriends and shaved my head alongside my best friend, who shaved hers with me. This was an important step for me. Firstly I wanted some control and choice about my hair. Secondly, I have two daughters who were aged 3 years old and 4 months old at the time.
I did not want them to see my hair falling out in clumps. I found power and strength in doing this. It helped set me up mentally for what lay ahead in my treatment plan.
I’m not one to wear makeup, so drawing on my eyebrows or putting on lippy weren’t on my daily agenda. So I really just went with it. Chemo hats/scarfs just didn’t suit me. So I wore a thin slouch beanie or a baseball cap.
Before treatment
Headshave with a good friend
At the peak of treatment
Enjoying the day out
Hair regrowth begins
My fingernails changed as a result of treatment, which was physically painful. But they have grown out and are exactly the same as before.
What I really wasn’t prepared for was the bloated face that came along with the steroids during chemo. My face had never been so round. When this was in full effect I really had that ‘cancer patient’ physical appearance. That was hard.
When I hit the peak of my treatment I felt physically and emotionally broken. I didn’t recognise myself, and even though people told me how well I looked, I certainly didn’t feel that way.
However, all these changes stopped as soon as chemo finished. My hair fuzz was coming through within a month of finishing chemo. I know some enjoy the chemo curls but I was thankful that I didn’t have them. My hair, although slightly darker, is exactly the same as pre chemo.
My advice to other women going through TNBC treatment is to take the time to acknowledge your physical self – before, during and after. Look in the mirror, see you, and try to remember that this is a small sacrifice for a bigger gain. You will absolutely find yourself again.