Like many women post-menopause, Jo Gilfedder put her noticeably bigger, wobblier tummy down to her age.
‘My previously flat stomach was starting to feel bigger, though I berated myself for it, assuming it was middle-aged spread,’ says Jo, 54, an advanced neonatal nurse practitioner and mother of four, who lives near Grantham in Lincolnshire.
But less than six months later, in April 2023, she was lying on her bed one day when she prodded her stomach and felt a mass on the right side. She had to dig deep to feel the satsuma-sized lump, which, thanks to her medical training, she could tell was just to the side of her bladder.
Knowing instantly that something wasn’t right, Jo made an emergency GP appointment.
‘The doctor agreed he could also feel the lump and referred me for a scan on the two-week wait list for cancer,’ she says.
But within just a few days – to her terror – Jo says ‘the lump felt more prominent, so it seemed to be growing fast’.
Back at her GP after the scan, she was given blood tests and told that her scan showed a mass on her ovaries so she was referred to the gynaecology department of the Queen’s Medical Centre, Nottingham.
There, a few weeks later, she had an MRI scan that revealed the tumour was connected to her appendix, suggesting it wasn’t actually ovarian.
Jo Gilfedder says that despite her medical background she had never heard of the type of cancer she was diagnosed with
‘I felt utterly powerless,’ says Jo. ‘I had another CT scan and was referred to the colorectal team.’
This team said that the CT scan showed a jelly-like appearance – which was indicative of a build-up of mucin, a gelatinous fluid that is characteristic of PMP, or pseudomyxoma peritonei. Jo was told this is a very rare type of abdominal cancer, which typically starts in the appendix (though it can also sometimes start in the bowel, bladder or ovaries).
She was offered a referral to either Manchester or Basingstoke, ‘because they’re the only places in the UK to deal with PMP,’ she says.
‘Despite my medical background I had never heard of it. I was thinking that my worst fears were being realised.’
A little over a month later, in July, the diagnosis was confirmed – and the radical surgical approach that would save her but would mean removing six organs in total.
Reading up on PMP, Jo quickly realised just how serious it was – and learned that her prognosis depended on how much of the cancer could be removed during surgery.
‘The not-knowing was frightening,’ she recalls. ‘And I quickly learnt that it would be a complex treatment, which would typically involve multiple organ removal.’
Although there can be more aggressive cases, PMP is normally slow-growing – and unlike other cancers it does not spread via the blood and lymph systems to other parts of the body, but grows and spread within the abdominal cavity.
Jo learned that, depending on the extent of the spread, she could have anything from a 30 to 60 per cent chance of surviving another five years.
‘As a mother of four, my biggest fear was that doctors would say that there was nothing they could do to help,’ she says.
Rebecca Fish, a consultant colorectal and peritoneal surgeon at The Christie NHS Foundation Trust in Manchester, where Jo was treated, explains: ‘PMP is very difficult to detect – often, there are no symptoms until the disease becomes more advanced.’
It can also be mistaken for ovarian cancer initially as it can spread to the ovaries, and the symptoms of both ovarian cancer and PMP overlap – including bloating, abdominal pain, and change in bowel habits. (In hindsight, Jo had had some intermittent diarrhoea, around the same time she noticed her growing waistline, ‘but it was only happening about once every eight weeks so sometimes I assumed it must have been caused by some medication I was taking, or something I had eaten,’ she says.)
PMP is usually diagnosed from a scan – although PMP that starts in the appendix can sometimes trigger appendicitis (swelling and inflammation of the appendix – felt as extreme pain around the belly button that moves towards the lower right hand side of the tummy and gets worse) and so sometimes PMP is ‘found within the appendix after it has been removed at operation’, explains Ms Fish.
‘Left untreated, the cancer grows and spreads inside the abdominal cavity,’ she adds.
The procedure for Jo’s condition can take between six and eight hours
‘The cells produce a thick, jelly-like substance called mucin which collects inside the abdomen. The build-up of mucin causes symptoms such as abdominal swelling which is why PMP is sometimes referred to as “jelly belly”.’
Very little is known about why it happens – or whether some people are more likely to get it than others.
‘There are no known risk factors,’ says Ms Fish. ‘PMP affects around two people per million each year of all ages, both men and women – meaning there are fewer than 100 cases in the UK each year. This is why it is treated at two specialised centres.’
The only effective treatment for PMP is surgery called cytoreduction combined with a procedure called HIPEC, where a heated chemotherapy solution is circulated around the abdominal cavity.
‘This treatment is only offered at specialist centres in the UK – at The Christie in Manchester, we do over 150 of these operations each year,’ says Ms Fish.
‘It is a long procedure which usually takes between six to eight hours, although it can last longer.
‘The operation involves stripping away the lining of the abdominal cavity (the peritoneum) and, depending on the organs affected by the disease, might also involve removal of the gallbladder, spleen, parts of the bowel, and in women the ovaries and sometimes the womb.
‘Sometimes the jelly-like mucin can be removed from the surface of organs by scrubbing or wiping with a gauze swab, or with electrocautery [using electric current to remove tissue].
‘Once all the visible disease has been removed, heated chemotherapy solution is circulated inside the abdomen. Giving the chemotherapy directly inside the abdomen means that it can get more easily to the place it is needed and eliminate any microscopic cells that might be left behind after surgery.’
Conventional chemotherapy – delivered intravenously or in tablet form – is sometimes given for PMP, but only for very high-grade (aggressive) cases, which surgery isn’t able to clear. But even then, it can’t eliminate the disease and is often not very effective and is given only to try to control the disease for the purposes of palliative care, says Ms Fish.
‘However, if the cancer is confined to the appendix, or there is limited spread inside the abdomen, treatment with surgery is very effective. If all the disease can be cleared during cytoreductive surgery, the prognosis is very good; five-year survival is between 75-95 per cent depending on the grade of the tumour.’
Before her treatment, Jo was given a plan to have all her vaccination boosters such as Covid, flu and meningitis.
‘This was because the spleen and organ removal would result in a loss of immunity and so I needed to have the jabs in order for my body to be able to build up antibodies before this,’ she says.
All the while, she lived with the intense worry of how much the cancer might be spreading. ‘In the months I was waiting for the operation I could see my previously flat stomach swelling like a mound on one side, so much so that one day my son – then aged 16 – commented that I looked pregnant.
‘I also couldn’t wear jeans because they were too uncomfortable around my stomach.’
The tumour on Jo’s appendix – which was 11cm in diameter when she was diagnosed – was 17cm in diameter when it was removed, in September 2023, in what ended up being an 11-hour operation, due to the complexity and number of organs that had to removed.
Surgeons took out Jo’s fallopian tubes, ovaries, spleen, gallbladder, the omentum (a layer of insulation in the abdomen that covers all the organs) – even her tummy button had to be removed, ‘because it’s inverted and so there was a risk that cancer could hide there’, says Jo. ‘It’s weird not having one!’
She also had a hysterectomy. ‘I had already gone through menopause about a year earlier, but the recovery was tough,’ recalls Jo.
‘Physically it was hard going back to work – which I did six months afterwards, because although I love my job, it involves lots of standing and long days which I struggle with. I used to do four 12-hour shifts in a row which I can’t do now.’
Scar tissue from such extensive surgery can also cause problems – in particular, it can cause the bowel to kink and become blocked (known as obstructions.)
‘I got an obstruction from eating vegetable soup and ended up in hospital and they put a nasal gastric tube in temporarily,’ says Jo.
‘I have since learnt that I have to avoid high-fibre foods, but apart from that I can eat more or less what I want.’
Fortunately, the operation was a success and doctors have told Jo that she has a 65 per cent chance of being disease free for the next ten years.
More than a year on, ‘I have CT scans and blood tests every six months. I still get “scanxiety” before every scan, where I become extremely anxious for days beforehand that it will show the cancer has returned,’ says Jo.
‘But I’m grateful to be here for my husband Barry and the children, who are now 21, 20, 17 and 14.
‘I intend to live life to the fullest now. Since my operation I have travelled to New York, Virginia, Rhodes, London, Cornwall and Loftus in north Yorkshire, where we have finished renovating a house. I have tried surfing for the first time ever, which despite some wipeouts was amazing.
‘I’m sharing my story to tell people to listen to their own body and don’t ignore strange symptoms.’
- For more information on PMP visit pseudomyxomasurvivor.org
