– I would not feel safe if I lived in Oslo

In the new season of the documentary series “Norway behind the facade” on TV 2, 28-year-old Maren Johnsen tells about how her pap smear was misinterpreted when she checked herself for cervical cancer.

The severe cell changes were not detected. A year and a half later, she was diagnosed with cancer.

Maren is now at stage four out of four and the doctors have advised that she will probably not grow very old.

– Do you remember what you thought when you found out that the test was misinterpreted?

– I got angry. It was pure anger at first. And of course a big shock, says Johnsen in the episode.

You can see it here:

The double check saved Tonje

At about the same time that Johnsen took his first pap smear, Tonje Sivertsen Larsen (28) did the same.

The mother of small children lives in Grovfjord in Troms. Her cell sample was routinely quality assured with an additional test at the University Hospital of Northern Norway (UNN).

The additional check revealed cancer that had not been detected at first. Tonje had an operation to remove the cervical plug and is now completely healthy.

If the cancer had not been discovered, the mother of young children imagines a frightening scenario.

– This year I was supposed to come in for a new examination, where they had most likely found a large tumour.

Different practices in different parts of the country

Only Helse Nord double-checks cell samples. Tonje Sivertsen Larsen thinks it’s a shame that it doesn’t apply elsewhere in the country.

– I would not feel safe if I lived in Oslo, she says.

Senior doctor Sveinung Sørbye is one of the country’s foremost experts on cervical cancer. He and his colleagues have on their own initiative adopted the additional test on patients at the University Hospital in Northern Norway, UNN.

– Of women aged 25 to 33 who follow the screening program and who develop cervical cancer, 50 per cent of the cell samples have been assessed as normal. It is not good and far too high, says Sørbye to TV 2.

It is exactly this margin of error that has affected cancer sufferer Maren Johnsen. If she had lived in northern Norway, the doctors at UNN would have taken an extra test. A so-called HPV, mRNA test. You then analyze the sample in a machine and get either a negative or positive response for viruses.

Based on the test results, i.e. which samples show HPV infection, UNN re-examines many of the cell samples. This is what they believe saves lives.

– We think that it is so important that women avoid getting cancer after a normal Pap test that we do this on our own initiative, says senior doctor Sørbye at UNN.

He says they have been using this method since 2016 and that they have good documentation that this works well to reduce the margin of error.

Read what the Norwegian Cancer Registry answers further down in the matter.

According to Sørbye, cell changes are then found in 30 to 40 per cent of the extra samples. They were not detected at the first check.

– So if you are a young woman and can get this, is it an advantage to live up here?

– Yes, there is double security. Both a normal cell test and a negative mRNA test.

But the mRNA test is debated in parts of the professional community. The Norwegian Cancer Registry has the national responsibility for screening and the cervix programme. They do not want to use the test from Northern Norway because they believe it is not approved. They also believe that the test cannot show a sufficiently good effect.

The criticism is rejected by senior physician Sørbye at the University Hospital in Northern Norway.

– We have used this method for many years and know what we are talking about, he says.

The cancer registry is changing its practice this year

The Norwegian Cancer Registry says that one in 10,000 women on a general basis will experience that a normal cell test turns into cancer. When TV 2 asks specifically about the statistics that Maren Johnsen is part of, they answer:

– In 2021, half of the women who had appeared for screening, and who developed cervical cancer, had a “normal” test, says Director of the Cancer Registry, Giske Ursin, to TV 2.

Despite this, Ursin is not a supporter of the practice in the north.

– They believe it gives good results, but we cannot confirm that now, because the numbers are far too small from Northern Norway. I hope it has produced good results because they have introduced a method that has not been approved in the program overall, so they have taken a risk, says Ursin.

– They think they have saved lives, right?

– They think so and I hope they are right, because they have introduced a method that has not been approved in the screening programme.

The director of the Norwegian Cancer Registry also acknowledges that the current system is not good enough. The cancer registry will now change the cervical cancer program to be based on HPV testing. This means that the cell sample must be discarded and replaced with a sensitive DNA test that reveals viruses.

– The HPV test has been part of the program for many years on women over 34. But internationally, it has been controversial to use this on the youngest women. Now they have found out that it is a good idea, says Ursin.

Superintendent Sørbye in Northern Norway says that they too will use the new test method when it is ready from the summer.

– The new one will replace our HPV, mRNA test, says Sørbye.

TV 2 has tried to get a comment from the Minister of Health, Ingvild Kjerkol, about what is emerging regarding women’s health and pap smears in “Norway behind the facade”. Both about the margin of error and the increase in cervical cancer in Norway. The minister responsible does not answer TV 2’s questions, but State Secretary Karl Kristian Bekeng (Ap) does.

– Why has the HVP test not been introduced in young women before?

– HPV is very common in young women. Research has shown that examination of cell samples under a microscope has been the safest screening for this group, among other things to avoid overtreatment. It is the steering group for the cervical program that has decided to introduce HPV testing in young women from 2023, and which has assessed that the improved cancer prevention effect outweighs the disadvantages of introducing HPV screening for younger women, replies the state secretary.

He says the following about the margin of error for cell samples:

– It is important to provide good information about the advantages and disadvantages of screening. The Cervical Cancer Program is administered by the Cancer Registry. In the information material from the Cancer Registry that is sent to all women who participate in the screening programme, it is clearly stated that serious cell changes for various reasons can remain undetected. It also appears that even if the test results are normal, it is important to quickly contact a doctor in case of symptoms such as persistent irregular bleeding or other symptoms, says State Secretary Karl Kristian Bekeng to TV 2.

– Probably loses his life

Cancer sufferer Maren Johnsen is not impressed. She says it is frustrating to know that health authorities have had good knowledge of the HPV test, but still spent many years introducing it for the youngest group.

– First of all, I am angry because it has meant that many girls have lost their lives. I have contracted cervical cancer and will probably lose my life to this disease, says Johnsen.

The director of the Cancer Registry says that Johnsen has been unlucky and that her story is sad.

– I understand that many women find this frustrating, but we have to remember that there are fairly solid routines for introducing new methods in Norway. It is because they should not harm us more than it benefits us. It takes time, says Giske Ursin.