“Cancer comes in all shapes and sizes it does not discriminate, you are never too young to get cancer. But when faced with your own mortality something changes.
“You love a little harder, appreciate a little more and find that the human spirit is a miraculous tool.”
These are the words on Jess Higgins’ Facebook page Do it for the Girls. Battling a rare breast cancer, she is sharing her story for many reasons.
“I want women to become ‘per-cyst-ant sisters’,” Jess said.
“We need to take our health into our own hands and insist on getting a second or third opinion, even if we fit outside the ‘likely’ age or family history range of cancer.
“If people walk out of a doctor’s surgery and they’re not 100 per cent happy with what they’ve been told about a health problem, then insist on further testing.”
Jess Higgins is 31 years old. She has two children aged six and five, and a loving husband.
In November 2015, Jess and Dale Higgins were married. They built their own home. Since 2014 Jess had been in and out of her doctor’s surgery concerned about a lump in her breast.
“I had a mammogram which came back inconclusive; a fibroid noma was what they called it, a cyst. My doctor said, ‘We’ll just keep our eye on that’,” Jess said.
“I was 28 when I first felt a lump. It did start to get sore. I started to feel it a little bit more. I went back to the doctor and had an ultrasound, which came back inconclusive, most likely a cyst.
“So I walked away thinking: It’s a cyst, it’s all in my imagination that it’s getting worse.
“Then I started to notice the lymph nodes under my arm were sore. I went back to the doctor and he basically said, even though your lymph nodes are up it’s most likely that your body is fighting an infection somewhere in your body.
“I left there thinking, right-o.
“About a year later a red dot started to develop, it looked like a little mozzie bite. About two months later the skin on my breast started to feel a bit different and look a bit different. It felt hot. A rash was spreading.
“I went back to the doctor and said, I’ve still got this lump, I’ve got this rash now and my lymph nodes are still sore.
“The doctor said we would do another ultrasound. It looked like an infection. This still came back inconclusive. This had been about two years since the mammogram.
“The doctor said we should try antibiotics and a cream [to treat the rash and infection]. That made no difference. We tried another round of antibiotics.
“By this stage I was getting really frustrated, thinking this was a really softly, softly approach. It had been going on for two years now.
“Eventually I pushed hard enough to get some answers. I insisted on a referral for an MRI [magnetic resonance imaging], a biopsy and a dermatologist.
“The doctor didn’t know what it was. He was trying to treat me and I kept saying could it be this or that, could it be breast cancer?
“He said, no you’re too young to get breast cancer. It’s just a cyst. You’ve had children. Your breasts naturally change.
“With all that in mind, I still insisted on getting answers. The rash had become irritable. It was changing my body.
“He said, go and do your MRI because maybe it’s an infection in your breast and this will show it up.
“I went and had the MRI. I knew straight away there was something wrong.
“The radiologist was nice and speaking to me normally. Then her voice changed and she would say, okay sweetie you’re doing really well. I thought it sounded different.
“She explained to me what the MRI does. They give you an injection of dye and watch how what ever is in you body absorbs it. If it absorbs fast it’s something sinister.
“I just knew. It was all happening my mind. I thought, it’s absorbed really quick and she’s talking to me differently now.
“My doctor got the results, phoned me and asked if I was at home and on my own.
“Dale was at work. He said maybe Dale should be there. I said no, you need to tell me.
“He said, you have a stage zero breast cancer. I was shaking and overwhelmed. I didn’t know what that meant.
“He said stage zero meant it’s a non-invasive type of breast cancer and it would be removed fairly simply. All I heard was I had breast cancer.
“I asked about the rash? He said that had nothing to do with it.
“I rang mum and she came home from work straight away.
“It was a terrible night. I cried most of the night. Dale and my mum were by my side getting kids off to school. I remember this was the first time I broke down. I screamed and cried into my pillow. My babies don’t deserve a life without a mother, how could this be happening to me?
“The next day the doctor phoned and said he did believe the rash had something to do with the cancer and was most likely inflammatory breast cancer.
“I said what’s the difference between that and what you told me I had yesterday?
“He said it’s stage three or four. It was more invasive, I would need more treatment and I’m so sorry, he said.
“Three or four days later I was in Newcastle at the breast and endocrine centre. They found two lumps. The cancerous rash, and the lymph nodes were all involved. We found a hotel for the night, I couldn’t stop thinking it was everywhere, it's in my brain I kept telling myself.
“The next week was terrible. My family cried so much but we banded together as we awaited the results of the tests.
“Two days and 12 different biopsies, a chest x-ray, bone and CT scan later I arrived home."
“The specialist delivered some good news that the cancer hadn’t spread to my brain, the cancer was confined to the breast area.
“So that was a good day.
“I knew I was still up against it; I had been diagnosed with an aggressive and rare form of cancer known as inflammatory breast cancer (IBC).
“I saw an oncologist at Port Macquarie and was started on chemotherapy. Based on how that goes the next step will either be radiotherapy or surgery.
“At this stage, I’ve got two rounds to go (of six).
“I believe that if enough of the cancer has gone doctors will do a mastectomy next or, if not, it will be radiotherapy to shrink the cancer, then surgery.
“That’s the clinical story about where I’m at now.”
WHAT YOU CAN DO
“I want women to understand that finding breast cancer is not just about finding a lump,” Jess said.
“Even if you’re young and your doctor says it’s a cyst. Even if you’ve had children which does change your breasts. Even if the chances are low that it could be something serious.
“It’s important people listen to their own intuition.
“If you walk out of a doctor’s surgery and you’re one hundred per cent confident in what they say, then that’s great. But if you walk out feeling uncertain, then you should follow that instinct.
“Who’s going to take better care of you, than you?”
“It’s been hard. There are times when I’m not functioning well and I’m upset a lot,” Jess said.
“I think mentally it’s been extremely hard. Among all the side affects I’m having from chemo, mentally it’s been harder.
“Dale is coping in his own way.
“We’ve had to move out of our home. We’ve moved in with mum and dad. Dale is moving to Canberra for work.
“He works on the roads and moves around, that was our life. He was always going to move for work and come home at weekends and we would stay here. But now, I need care and so do the kids when I can’t care for them.
“Dale still needs to work. The bills have to be paid.
“We were lucky to have mum and dad here and they have a big enough house, it’s pretty full now.”
Jess’ mum Julie Gale has taken a year off from her job at Coles Laurieton, to care for her daughter and grandchildren.
“Some days are more difficult than others,” Jess said.
“Telling your five and four year old children that you have cancer is something a mother should never have to say. But I was open and honest and they handled it well.
“They did get upset when I explained what would happen to me, like, with my hair. My son said, ‘You’ll be a bro like me.’
“Skylah told me I wasn’t to shave my head. She said I had to wait until it all fell out. But I explained that I would have to shave it because it would fall out anyway. Eventually we shaved my head and she had a go and Logan had a go shaving it. Now she says she likes me with no hair and I look better!
“They don’t look at me like I’ve got cancer, they look at me like I’m their mum.
Jess’ family and friends are organising a fundraising auction to help the Higgins family through treatment and beyond. The event will be held at the Kendall Services and Citizen’s Club on March 25 from 2pm.
The date follows her final round of chemotherapy.
Because Jess is under the age of 50, with no family history of breast cancer, much of the treatment she will undergo isn’t covered by Medicare.
“There will be a few treatments coming up where I have to travel, for the surgery and reconstruction. It’s likely my ovaries will be removed too because it’s an oestrogen-driven cancer. I will need hormone replacement therapy.
“There may be some clinical trial treatments because it [IBC] is a rare cancer. I’m trying to source the best treatments, what will save my life.
“At this point in life most 30-year-olds have an amount of debt when you’re starting your family life. You don’t expect to get cancer.
“I want the best treatment I can get. You only get one crack at beating this.
“I worry about other young women who are going to get cancer and aren’t able to pay for the best treatments, so they’re not going to have them.
“The MRI I insisted on having, which picked up the cancer, was something we had to pay for. It’s expensive. I worry about women who are going to choose not to have tests to diagnose rare cancers because they can’t afford it.
“They can’t afford to have cancer.”
Jess hopes to donate some of the funds raised on March 25 to a charity for women’s health.
“The event is about raising awareness in our community about this form of breast cancer and educating women about their health.
”There are lots of things we need to do as women to help ourselves. You know your body better than anyone and if you’re concerned about it…do something.
“I feel that it’s becoming more talked about, to make people aware of the various signs and symptoms of breast cancer. It could be dimply skin, an inverted nipple, a hot or heavy breast.
“There have been a few people I’ve spoken to since I was diagnosed, that had been misdiagnosed too. They thought they had mastitis because they had been breast feeding.
“IBC is always stage three or four, never an early stage breast cancer. It’s metastatic which means it spreads to other places in the body.
“I guess I’m just really, really lucky I caught it just in time.”
Jess said the best way people can help is to come along and enjoy the fundraising auction.
“If any businesses would like to donate to the prizes for the event, that would be great. Or if not they can just come.
“Even if people can’t afford to bid on anything at the auction, just come and get together and have a good time.”
Jess has also started a GoFundMe page with a goal to raise $10,000. Just 14 days in, 100 people have donated and the dollar total is a staggering $15,430 and climbing.
FACTS ABOUT IBC
Each year, around 1-2% of the 13,000 women diagnosed with breast cancer will be diagnosed with inflammatory breast cancer. (www.canceraustralia.gov.au)
Signs of inflammatory breast cancer can develop quickly and may include:
- the breast looks red or inflamed or develops a rash – it often looks as if it’s infected or bruised
- the breast becomes swollen and enlarged and may feel heavy or uncomfortable
- the breast feels warm and tender
- skin on the breast can appear dimpled or pitted, like an orange peel.
Some people may also have a lump in their breast or armpit, pain in the breast or nipple, discharge from the nipple or a nipple that turns inwards (inverted nipple).