Adenoid cystic carcinoma — this form of cancer is so rare only 10 WA people have been diagnosed with the disease
A fund-raiser will be held tomorrow to raise money for local mother Michelle Whitney, who was last year diagnosed with a rare form of cancer.
IMAGINE the fear of being told you have only two years to live. The thought that you may never grow old with your partner or see your three young children grow up.
That is exactly what Michelle Whitney was told when she was diagnosed with adenoid cystic carcinoma late last year.
She was only 38 years old and was about to give birth to her third child Thomas, now 22 weeks. She also had two girls, Ebony (4) and Ruby (2).
This form of cancer is so rare only 10 people in WA have been diagnosed with the disease.
But unlike some people who are diagnosed with cancer, Michelle has refused to give in.
She has decided that she will live with the disease and see her children grow up.
Her husband Andrew and countless friends and family have vowed to support her every step of the way.
Michelle said she first noticed signs when she was eight weeks pregnant with Thomas.
Thomas was the only child she conceived naturally, her daughters were conceived by IVF, so he is looked upon as their little miracle baby.
“I got a cold and my glands flared up, then one went down but the other did not,” she said.
The gland was viewed with an ultrasound and it was presumed it was a cyst and that there was nothing to worry about. But the surgeon said it needed to come out because it was pressing on some major blood vessels.
Michelle had the gland removed while she was still pregnant, but then did not get a call from the surgeon for two weeks.
“I thought if it was serious they would have rang straight away, so I drove to Bunbury on my own.
“That was when they told me I had cancer,” she said.
Michelle was getting pain in her inner ear.
“I have had an ear problem on and off for 10 years,” she said.
“So now I wondered if it was related.”
Michelle went straight to Perth for an MRI scan which showed she had a lump at the base of her tongue, about the size of a walnut.
“They said they had to operate and that I needed to have my baby as soon as possible,” she said.
Having the operation meant Michelle would have her jaw split, possibly some teeth removed and most of her tongue cut out, then the defect replaced with a free flap graft from her forearm or belly.
“People don’t realise how much you use your tongue, you need it to eat and taste and talk,” Michelle said.
Michelle gave birth to Thomas on November 2 by caesarean section and then began preparing herself for the 14-hour, life-changing operation.
“We organised a friend to stay with Andrew and the baby at a unit next to the hospital,” she said.
“I was trying to prepare Ebony for how I would look after the operation and I was recording myself talking and reading stories,” she said.
But then Michelle had another scan which revealed the cancer had spread to her lungs and possibly liver.
“The surgeon told me he had cancelled the surgery and that he would not operate. He suggested I have less than two years, it usually spreads when it is in the later stages,” she said.
Michelle was told her only option was radiotherapy to treat symptoms.
The cancer has spread to about a dozen spots through her lungs. The biggest cancer was about 22 millimetres.
But then Michelle was told about the trace element selenium, which is administered intravenously or as a tablet.
“I wanted to get hold of it, so I started calling around.
“I was about to call a place in California when some friends came to visit and said they said their doctor had treated their son with selenium,” Michelle said.
Michelle contacted this doctor who put her in touch with a GP in Fremantle who has been using selenium and natural anti-cancer herbs to treat cancer patients for about 20 years.
“When I got in touch with the doctor he told me he could give me more time, and quality of life,” she said.
Michelle started the treatment immediately, travelling to Perth to be hooked up to an IV three days a week.
“First it was through my veins but now I have an infuser port,” she said.
Michelle has been having the treatment for 12 weeks, with different natural therapies including the selenium, genistein from soy, quercetin, flavonoids and green tea polyphenals.
The last round of treatment was with curcumin which is derived from turmeric. “The tumour reacted to it so it is definitely working,” she said.
Michelle had a scan done and it has shown the biggest tumour has shrunk from 22mm to 20mm.
“That is a 10 per cent reduction in 12 weeks,” Michelle said.
The tumour in her tongue was first measured as being 22mm by 21mm by 16mm in October, then measured as being 33mm by 30mm 23mm before she started the treatment.
After the 12 weeks of treatment the tumour has shrunk to 28mm by 25mm by 23mm.
“It is getting smaller, it is amazing,” Michelle said.
But each time the tumour was measured it was done using different forms of measurement.
“I am going back to my initial doctor to get it measured using the same technique so it is more accurate,” she said.
Now that she has seen the positive results from the treatment, Michelle said there is no way she will have the previously planned operation.
And although she has considered the fact that she may never live to see her children grow up, she is adamant about staying positive and will not accept that idea.
“I am going to live with this,” she said.
“I know everyone dies one day and I know the forecast isn’t brilliant, but I will deal with every step as it comes.
“But I don’t accept that nothing can be done.”
Michelle has been putting on weight since the treatment, which is a good sign, and people have commented on how good she is looking.
She has also been following an alkalizsing, low-GI, no added sugar, low-methionine and high-enzyme diet, helping to attack the cancer on all fronts.
However, because the treatment is not mainstream, it is very expensive.
“I think the Government should make this treatment available to everyone who has cancer,” she added.
Michelle and Andrew said they are lucky to have had tonnes of support from family, friends and the wider Collie community.
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