When I was 14 years old and completely flat chested I had discovered a lump on the right side of my chest. So I told my mum who insisted we go see a GP who then referred us to a specialist in Chatswood. The specialist told my mother and me that it was a hormonal thing, I was just growing and that we had nothing to worry about.
When I was 17 years old and I had developed my breasts, they started feeling sore all the time, so off to the GP I went again. This time, they found eight lumps in my breasts. I was diagnosed with having benign fibro adenomas and chronic mastitis. Basically, what that meant, was the lumps were a hormonal issue – my body wasn’t producing enough testosterone to balance the oestrogen.
At the age of 19 I had my first surgery and three lumps were removed.
Tell me about your treatment process
From the age of 19 to 40 years old I had about eight surgeries (you could say surgical lumpectomies). Over the years, the lumps would grow and they would remove one or two at a time. But more would continue to grow.
I went on this whole massive roundabout of going to the GP, discovering another lump, having it tested and getting an ultrasound and mammogram done. The lump was reviewed and then taken out if it was over 3cm. Six months later; I was back doing the whole thing all over again.
What treatments were offered to help minimise or eliminate the lumps?
I was one of the first few people that trialled Tamoxifen but that didn’t stop the lumps from reoccurring, coupled with the fact that the drug carried a high risk of uterine cancer. Being in my early 20s, this was considered a high risk. I was then advised to take Danazol, a steroid treatment for about six months although that didn’t work either.
When I was 25 years old, it was recommended that I have a subcutaneous mastectomy on the right side as the lumps mainly grew in the right breast. After removing a quarter of the breast tissue in the right breast, even that had not effect.
Is there a family history with breast disease?
My mum was adopted so we really don’t know. My mum did have a couple of cysts removed when I was in my teens but they weren’t really anything serious.
Two of my sisters still haven’t gone and had breast screening done – shocks me that people close to me are not learning from my experience.
The negative side: I have concern for my daughter and possibly son.
When Oliver was born, I did try and breast feed him for about 8 months. I spent many painful nights on the phone to the lactation specialists trying to do the right thing by my child, but eliminate the agony that went with breast feeding.
Lily was quite ill when she was born so I didn’t get the chance to breast feed her so they put her straight on the bottle.
I didn’t enjoy the experience of breast feeding at all because it was excruciating. With Chronic Mastitis, when your breasts are filled with milk the lumps become painful all the time.
What were the obstacles that you faced?
Breast disease awareness has grown because people talk about it now. But no one talks about the journey of it. There wasn’t any education available to me about why my body was producing these breast lumps.
I have to say the biggest thing was the emphasis they put on the disease but the lack of resources available to me because of my age. My struggle was; it would cost me $2000 to spend 7 hours at the Sydney Breast Clinic. It used to bug me that I had to be at least 45 years old to have a free mammogram. Given my history and what I was going through it did not make sense to me at all. The whole process used to frustrate me.
When I was referred to the Sydney Breast Clinic I met Dr Heidi Wong – one of the best breast surgeons in Sydney. She had monitored me for the past five years.
In 2012 there were a few niggly lumps she wanted to take out – they were getting too big; she had also told me I had developed 13 lumps. There was one in particular that she didn’t like the feel or the look of it. I was susceptible to how my breasts were feeling so I understood what she was talking about. If something wasn’t right I could feel it. So I had surgery – she removed three lumps in the end; the one lump she was concerned about was transitioning into a phyllodes tumour which is really rare. There are only a few cases in Australia with this tumour. (You can check out more about this here: http://www.breastcancer.org/symptoms/types/phyllodes)
Generally the lumps were benign however they were starting to change in my 40’s. My breast disease should have eradicated in my 40’s but they were getting worse. When I went to see Margaret Bridgeman at the SAN hospital, she told me my options were to take Tamoxifen or have a double mastectomy. She asked me ‘why do you need them for? You’ve had two kids. Why are you putting yourself through this? Just get rid of them’.
After this session, I went to see my Gran who plays an important role in my life who basically said the same thing. So I returned to Dr Heidi Wong with my decision and told her I wanted to have the double mastectomy.
She booked me the following week and I had the surgery – it was the best thing I had ever done for myself and would be incredibly unlucky if any lumps grew back. They left less than one per cent of tissue on each side.
Some women have reconstruction afterwards but I couldn’t get implants because of the nature of my disease and being so susceptible to breast lumps. It would have been ridiculous to put something there after three decades of trying to get rid of them.
It’s coming up to two years since I had the mastectomy and I still feel happy about my decision.
Did you seek counselling?
I went to counselling with the Breast care nurses. The nurses advised 65% of marriages don’t make it after this type of surgery. Generally the husband doesn’t cope with it or the woman doesn’t cope with it. The woman feels she isn’t worthy of it – can’t cope with the surgery and then the communication stops. Sometimes the husband can’t cope with the physical side of it. Sadly my marriage was in the percentage that didn’t make it, separating five months post-surgery.
They say emotionally it can take 2-5years to recover after surgery.
How did you feel after the surgery?
I know I was ok about it even though it was a big thing. Since I didn’t learn to appreciate or love my breasts because they were giving me grief since I was young, I had no attachment to them. I kick myself and wish I had done it 15-20 years ago when they recommended it but I have to let that go. That was my thing in life and that’s what I had to go through.
I felt a bit like what an amputee would feel like when you’ve had a part of your body removed. I have 40 stitches across my chest – it’s a big thing.
And then I thought ‘great I can go on a shopping spree now.’ But you don’t realise how much clothes are made to fit breasts; even shirts didn’t conform to my body. Now I go for a lot of printed stuff because I feel the plain stuff really highlights I don’t have breasts. I do accessories to help remove the focus on my chest.
Trying to find swimmers without padded inserts or wire has just been a nightmare. I don’t feel 100% comfortable in swimmers because my ribs and stomach stick out more than my chest and my chest doesn’t look good in a bikini. I had to just get over it and wear a sports bra or wear one pieces.
Was there a treatment plan after surgery?
Every day I would rub and massage the scars with vitamin E. I touch the scars and I look in the mirror and I do it without fail every day. A new breast specialist I went to see for a check-up couldn’t believe how much the scarring has mended.
Have you had any struggles after surgery?
I’ve had physical limitations. I don’t have full arm extension, my muscle strength is minimal. I can’t do a lot of stuff I used to do; lifting basic things around the house or pulling the boot down of my car – it absolutely buggers me; sometimes I just can’t do it. Lifting shopping bags; the weight of stuff on my shoulders – there is a level of uncomfortableness around day-to-day stuff like simply washing my hair. And there is general wear and tear of the body and fatigue.
I still don’t have 100% of my nerves back in my chest so there are still numb areas.
Do your children understand what has happened to you?
The kids only came to the hospital twice – I was in the cancer ward for some reason so it wasn’t a nice environment for the kids. The lovely thing about the hospital is that although they had the drain bags coming from my chest, they dressed them up with covers so the kids couldn’t see the blood draining.
Oliver is really good; he did a lot of coming up to me and putting his arm around me and would even help me put a shirt on. I showed them quite early on so they are very aware of what happened.
Lily was straight away ‘that’s disgusting’ when she saw my chest. When she said that I said ‘yeah it is right?’ – It was pretty bad but I didn’t want to cover up the truth of it. I wanted her to know it was ok and that it looks worse than it is.
Is there something people did to help you get through the double mastectomy?
My mum was my biggest support. She was always there for me.
Advice to women who are considering surgery?
The main thing I would suggest is that they actually go and speak to professionals about somehow being with other women going through it. That’s why I think the Breast Care Nurses are fantastic; their level of care is awesome and they are compassionate. You can feel quite isolated after the surgery.
If you don’t have a small community with you, it can be quite traumatising so statistically the counselling is a big thing. Most people who don’t know me wouldn’t know I had a double mastectomy so it’s not so bad as there are women out there who are flat chested anyway.
I would say to anyone who experiences any issues with their breast, learn to love your body regardless whether it is attractive to society or not. Try not to worry what other people are thinking; it’s extremely hard so dress for you and don’t hang onto something that could potentially kill you….