"I could feel the tumor growing in my leg, and at last I see, that it began to bulge out and become larger and larger."
the Words are Ninna Hedegaard Rasmussen, and she can remember her frustration when her doctor told her that the growing knot in her leg was nothing, 'she should learn to live with'. Ninna Hedegaard Rasmussen was not in doubt. There was something seriously wrong.
She is one of the many readers who have written to B. T., after we have told the stories of Arne Notkin, Sandra Dark Valente and Leif Christensen. Patients in the Danish healthcare system, which themselves had to get involved to get the right diagnosis or treatment.
For Ninna Hedegaard Rasmussen was the road at first, a diagnosis and since treatment also long. She was 24 years old, as a masseur could feel something in the leg, 'there was not, as it should be'.
Ninna Hedegaard Rasmussen also had pain, and her physician decided to refer her for an MRI scan.
It gave rise to a suspicion of cancer, and Ninna Hedegaard Rasmussen was transferred to Odense University Hospital, where she through a year went to the ongoing studies without answers to what was wrong.
"You can't say what it is, it is something you must learn to live with," remember Ninna Hedegaard Rasmussen, her doctor finally said to her.
At the time, she had trouble sitting down because of pain, and she refused to accept the doctor's judgment. She asked for another doctor's assessment, and it was the first decisive step on the road to a diagnosis.
A kræftlæge at Odense University Hospital conferred with his colleagues at Skejby Hospital, and they could finally tell Ninna Hedegaard Rasmussen, what it was that grew in her legs.
"I got to know, I had a very rare cancer type. It is not life-threatening, but it also can not be removed with surgery."
Doctors decided to treat Ninna Hedegaard Rasmussen with immunotherapy in order to keep the tumor in the ro, but the drugs had significant side effects.
So big that it was impossible for Ninna Hedegaard Rasmussen to go to work, and she began to fear she would end up on early retirement, before the age of 30 years.
Ninna Hedegaard Rasmussen began to research on her cancer, and she made a surprising discovery.
IN the UNITED states and Australia had one good experience with to burn the tumor with high-frequency ultrasound. She wrote, therefore, Gobahis to the Danish medicines agency, which recommended the treatment in her case.
But one of the doctors who treated her, believed there were other treatment options in Denmark with chemotherapy. He would therefore not refer Ninna Hedegaard Rasmussen, and therefore dismissed the region to pay.
Ninna Hedegaard Rasmussen and her family saw no other way out than to pay itself.
It may seem odd, when now the Danish health care system had other treatment options, as Ninna Hedegaard Rasmussen could get free, but she tells to B. T., that was a question about whether she could have a normal life or not.
"With chemotherapy, I could nothing. I slept 20 hours a day, and it was impossible for me to go to work, while I with radiation therapy could work," says Ninna Hedegaard Rasmussen.
B. T. have examined the price of the types of immunotherapy, as the man treated Ninna Hedegaard Rasmussen in Denmark. She was in treatment for half a year, and it costs 153.600 crowns with one of the two preparations, while the stråleterapien in Australia cost of 60,000 crowns.
It is two years ago, Ninna Hedegaard Rasmussen was treated in Australia. The tumor has been in ro since, and she can work and live a normal life.
B. T. has asked the Region of southern denmark, they could not cover Ninna Hedegaard Rasmussen's treatment costs in Australia, even though her doctor thought she should have it. The region's press office refers to the Danish health act, where it appears that the patient must be set for the treatment abroad of the department where the patient is affiliated, before the committee of the regions may cover the cost.
Ninna Hedegaard Rasmussen would like to tell his story, because she is very aware that she has herself to thank for that she received her diagnosis and the treatment that makes her able to live a relatively normal life without the side-effects from medication.
"I can't help to think that not everyone gets the same opportunity, and I also think it is incredibly problematic."
B. T. has contacted the doctor who would not refer Ninna Hedegaard Rasmussen, but he has not returned our request for an interview.Date Of Update: 26 November 2019, 08:00