Scots mum had negative smear tests for years - then discovered she had rare cancer
A mum who kept getting negative smear test results was shocked to discover she had a rare form of cervical cancer - one that isn't detected by these tests. Helen Swan, who hails from Aberdeen, experienced weight loss, extreme fatigue and vaginal bleeding from 2017 to 2019.
Despite her smear tests coming back negative, the 54-year-old's symptoms continued to worsen. After an examination by her GP revealed tumours in her vagina, she underwent a biopsy in October 2019.
In November 2019, Helen was diagnosed with endocervical adenocarcinoma, a type of cervical cancer that starts in the inner lining of the cervix. The cancer was at stage two B, meaning it was "locally advanced".
Helen says it had the "potential" to be curable, but scans in November 2021 showed it had spread. Doctors found 16 tumours in Helen's lungs and gave her six months to live.
Rejecting the option of palliative chemotherapy on the NHS and choosing to "put it on hold", Helen began exploring alternative treatments. She looked into over-the-counter supplements, dietary changes and mistletoe therapy, which uses extracts from the plant as a complementary cancer treatment.
In December 2024, an MRI scan revealed that Helen's cancer had spread further to her scalp, and a full body scan showed it had also reached her spine, jaw, thyroid, liver and bones.
Doctors have suggested to Helen that she undergo palliative chemotherapy, but there was "no guarantee it would slow the spread" of her cancer.
Searching for alternative treatments, Helen came across a clinic in Germany providing Trans arterial chemoembolisation (TACE) treatment — a procedure the NHS employs for primary liver cancer but which wasn't offered to Helen as her cancer started elsewhere and is also secondary.
This targeted TACE therapy involves direct chemotherapy injections into tumours to "kill them" and each session costs £4k. After two successful sessions, Helen has been raising funds to travel back for a third treatment, having been "pleased" with the outcome thus far.
Helen, a mum-of-three, previously a primary school teacher and artist, commented: "I was concerned I might have cervical cancer because I was bleeding so much.
"I have never had a positive smear test. The cancer I have was not picked up on the smears because it tests for cancerous cells on the outside of the cervix.
"My cancer originated on the inside of my cervix. If I was having a smear test and it had grown down to the outside of the cervix it would have picked it up.
"It was finally identified after I approached the GP feeling like I was dying due to the excessive bleeding. They carried out an examination and attempted a biopsy too, but struggled due to the extreme amount of bleeding.
"The tumours were so vascular if they had cut into them, I would have bled a lot. The whole thing was really hard and traumatic.
"I could see the look on their faces. After the scan revealed the tumours in my lungs, I was given six months to live.
"I thought that was just not good enough. My sole purpose of doing this [alternative treatment] is my little boy needs me.
"My oncologist said he thought my first treatment had given me a reduction in my tumours – I don't know if it's my overall tumours or the tumours he'd specifically treated, but he saw a 10 per cent reduction".
In February 2025, Helen launched her GoFundMe page and has since raised over £16k towards affording TACE treatment at Frankfurt University Hospital, Germany.
TACE is a procedure that involves injecting chemotherapy into the blood vessel that feeds the cancer, followed by a substance like a gel, or tiny beads to block the blood supply.
This treatment is currently only offered to NHS patients with primary liver cancer.
Helen has already travelled to Frankfurt twice in March and April for the treatment and says her German doctor is "pleased" with the results so far.
She shared: "It's the biggest hospital in Frankfurt, and I have to do my own flights and hotel. Last week I came back from my second visit.
"So far he's really pleased with the results, and it's started to work on my tumours. I've got three little tumours on my scalp, and I can already see they've gone down.
"I'm set to go again in May, but I'm only going to be able to afford another time once more. It's really hard on me, but I don't want to stop doing this if it's got the potential to save my life.
"TACE is only at the stage where they use it on liver cancer in the UK. Going here [to Frankfurt] and having this treatment us unbelievable.
"I'm hoping a few months I'll feel better. I don't know how much is possible for me, but I'm hoping I have the potential to get clear.
"It's really important to raise the funds to keep going." Helen urges all women to "advocate" for themselves.
She said: "Have your smear tests. Not all cervical cancer is the same, and if there is a test available, have them.
"Regardless of the smear test, you should have them and if you have any concerns research, look it up online, and go and get help. The smear test is different now to what I had.
"The smear I was having were looking for cells on the outside of the cervix, but the smear test now is looking for HPV.
"If the test comes back negative still go and get checked and ask the questions. I think you know your own body better than anyone else. If I'd have waited and not persevered and pushed, goodness knows what would have happened".
The NHS offers advice on their website for people thinking about having treatment abroad. They write: "If you're thinking about having medical treatment in another country, it's important to understand how it works and the risks involved.
"If you do not follow the correct procedures, you may have to pay the full costs of your treatment. You should discuss your plans with a GP before making any final decisions about travel or medical arrangements.
"Your European Health Insurance Card (EHIC) or UK Global Health Insurance Card (GHIC) does not cover going abroad for planned medical treatments.
"An EHIC or GHIC is for 'necessary healthcare' from state services when you're visiting the EU and Switzerland.
"Necessary healthcare means healthcare that becomes medically necessary during your stay, and you cannot reasonably wait until you're back in the UK to get it. You should also ensure you have adequate travel insurance."
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