"We were sat for days with our heads in our hands, working out finances to see which was the best route to go down. Things have had to be sold, things have had to be downgraded - just to cover the cost of the dental treatment."
Forty-one-year-old Debra Sykes, from Oldham, had a rare form of mouth cancer diagnosed in 2007.
After surgery and radiotherapy she was left needing dental implants.
For clinical reasons she could not get NHS treatment so had to turn to a private dentist.
"The final cost is £9,000 to try and save what teeth I have left. My partner had a motorbike and he sold that in order to pay for the downpayment to get the treatment started," she said.
Restorative treatment done in the hospital system is free of charge but where this isn't available, patients have to register with a local dentist where NHS dental charges apply.
If they cannot get access to an NHS dentist, they may be forced to go private.
"Facing cancer is the toughest road you will go down, but people are offered prosthetics, and breast implants. Teeth are a major part of your everyday life. They help with speech, chewing food, keeping your bone in place.
"I was told that it was cosmetic and they did not fund cosmetic dental treatment.
"But my argument is it's not cosmetic, when your teeth are crumbling, or you just bite on a soft piece of bread and part of your tooth falls away," said Ms Sykes.
Prof Iain Hutchison, director of the Facial Surgery Research Foundation charity says he would like to see more patients have dental implants fitted during their initial reconstructive surgery.
'Quality of life'
"Although it extends the length of the operation and requires excellent technical skill from the restorative dentist, it is well worthwhile for the patient to have the implants inserted into the bone that is used for reconstruction so that either immediately or at a later date those implants can be used to construct a bridge."
"Relatively speaking there are very few of these patients being treated every year in the UK, so I don't think it would be particularly costly to add in the cost of implant insertion at the time of surgery. This would immeasurably improve the quality of life of these patients," he added.
It is not just extensive restorative dental treatment that some patients might end up paying for out of their own pocket.
Aggressive surgery, radiotherapy and chemotherapy often leave the patient with significant lifelong dental needs and more frequent visits to the dentist.
But the BBC's 5 live Investigates programme has learned that mouth cancer patients are not exempt from NHS dental charges, meaning they still have to pay for routine treatment and check-ups.
Currently those who get access to free NHS dental care include under-16s, pregnant women and those who have given birth in the previous 12 months.
Patients who qualify for certain benefits are also exempt from dental charges, while those on the NHS low-income scheme can receive full or partial exemption.
But a leading UK dental charity wants to see that extended to include mouth cancer patients.
Dr Nigel Carter, chief executive of the British Dental Health Foundation, said: "Mouth cancer is a particularly debilitating cancer.
A lot of the surgery that is involved can really be very traumatic for the patients and their quality of life is impacted as a result.
To then have to worry about trying to find the funds to pay for the appropriate restorative treatment seems to be totally unfair."
Andrew Lyon, from Prestbury, Cheshire, had tonsil cancer diagnosed last July.
He underwent extensive reconstructive surgery and a six-week course of radiotherapy.
He now needs dental treatment but is unable to pay for it. "There are two teeth that need to be capped. The cost is over £200 each.
"If I don't sort this out, if I don't find the money, then I may end up in a situation where I'm facially disfigured and where I have more problems than I already have. It's a constant worry.
"If I did have exemption I would have had these caps done a long time ago."
The Department of Health told the BBC: "Although there is no standard exemption on dental charges for cancer patients, the local NHS has the power to waive these fees."
More than 6,000 people have mouth cancer diagnosed every year in the UK, and the disease is on the increase.
There has been a 48% rise in the incidence of mouth cancer in the UK over a decade.
Dr Carter said: "For the government it's a relatively low cost to the dental budget and it really wouldn't be felt at all. So I think it's something that should seriously be considered in providing equity for these patients."
A Department of Health spokesperson said: "We understand that treatment for oral cancer can lead to further dental problems and having access to good dental care is essential.
"Exemptions can also be made based on a patient's ability to pay. Dental care is free when delivered in a hospital setting."