Helen Swan knew something was wrong when she started suffering from weight loss, extreme fatigue, and bleeding
Helen Swan says her smear tests came back negative
A mum had negative smear tests her whole life before discovering she had a rare cervical cancer that’s not picked up on them. Helen Swan, 54, suffered from weight loss, extreme fatigue and vaginal bleeding from 2017 to 2019.
Despite checks like smear tests coming back negative, Helen’s symptoms got “worse and worse”. Helen underwent an examination with her GP – which revealed tumours in her vagina – and she had a biopsy in October 2019.
In November 2019, she was finally diagnosed with endocervical adenocarcinoma – a type of cervical cancer that originates in the inner lining of the cervix. The cancer was stage two B, meaning it was “locally advanced” and Helen says it had the “potential” of being curative, but scans in November 2021 revealed it had spread.
Doctors discovered 16 tumours in Helen’s lungs and she was given six months to live. Refusing the option of palliative chemotherapy on the NHS and chose to “put it on hold”, Helen instead looking into alternative treatments.
Helen underwent an examination with her GP – which revealed tumours in her vagina
She explored over-the-counter supplements, diet changes and mistletoe therapy – using extracts from the plant as a complementary cancer treatment.
In December 2024, Helen was told her cancer had spread further to her scalp after an MRI scan, with a further full body scan revealing it had spread to her spine, jaw, thyroid, liver and bones.
Doctors advised Helen to undergo palliative chemotherapy, but there was “no guarantee it would slow the spread” of her cancer. She explored alternative options and found a clinic in Germany that offers Trans arterial chemoembolisation (TACE) treatment – which is currently used by the NHS to treat primary liver cancer but was not offered to Helen whose cancer originated elsewhere and is also secondary.
The TACE treatment involves injecting chemotherapy directly into tumours to “kill them” and costs £4k per session. Helen has undergone two sessions and is now raising money to fly out there for the third time after being “pleased” with the results.
Helen is undergoing treatment in Germany
Mum-of-three Helen, a former primary school teacher and artist, from Aberdeen, Scotland, said: “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. I was eventually diagnosed after I had gone to the GP and said I felt like I was dying because I was bleeding so much.
“They examined me and gave me a biopsy as well of what they could, but they said they struggled taking it because I was bleeding so much. 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”.
Helen set up her GoFundMe page in February 2025 and has raised over £16k towards affording TACE treatment at Frankfurt University Hospital, Germany.
TACE is a procedure that involves having chemotherapy into the blood vessel that feeds the cancer, and then a substance like a gel, or tiny beads are injected to block the blood supply.
The treatment is currently only offered to patients on the NHS that have primary liver cancer. Helen has flown out to Frankfurt twice already in March and April for the treatment and says her German doctor is “pleased” with the results so far.
She said: “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 to Frankfurt and having this treatment us unbelievable. I’m hoping that, in 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: “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”.