A DAD whose wife was killed by a cancer that first caused back pain has since found out his twins also have the condition.
Jonathan Williamson, 70, lost his wife Sue in 2003 after being diagnosed with phaeochromocytoma in 1993.
It caused a rare tumour of the adrenal glands above the kidneys, and the cancer had already spread around her body.
When, in 2010, Jonathan discovered Sue’s condition had been caused by a defective gene, all four of his children were tested.
Two of his children were clear – Katie Kay, 45, a primary school teacher, and Jonathan, 43, a firefighter.
But twins Jennie and James, 41, had both inherited the gene and the tumours had already spread across their bodies.
Both parents themselves, they have been advised to wait until their kids are 10 years old to find out if they also carry the gene.
Grandfather Jonathan, of Dundee, set up the The Phaeo and Para Cancer Charity in 2018 in a bid to find a cure, launching a GoFundMe appeal to raise money for research.
He said: “In 1993, my life changed forever. Jennie and James didn’t know that their lives had changed forever, too.
“But our entire family felt the ripple effect. This gene, this cancer, it’s so devastated the family.
“We continue to push on to find answers – for those we’ve lost, those who currently fight and the future generations to come.”
A year after meeting Jonathan in 1971, a tumour was found in Sue’s adrenal gland.
It was removed and she went on to have a “completely normal” life, with no idea that more tumours were growing in her body due to her genetic condition.
She began to suffer backaches in 1993 and saw a specialist.
A biopsy revealed she had phaeochromocytoma, while tumours were found to have metastasized all over her body.
The unpredictable condition often occurs in sudden attacks. Only one in 10 tumours are cancerous.
If left untreated, it can cause severe problems like irregular heartbeats, heart attacks, strokes and organ failure, according to the NHS.
Jonathan said: “Sue was in really good health before this happened. She had four young children, she was a busy mum and we were living a normal life.
“It was devastating to begin with, as she was only given six months to live.”
A lifeline came when specialists said Sue was eligible for radioisotope therapy, which involved injecting radioactive liquid into targeted areas to destroy cancerous cells.
Sue would need to have it twice a year and it would extend her life.
Incredibly, the treatment was highly effective, as Jonathan said: “We were feeling pretty amazing.
“Going from six months to live to a treatment that would keep her alive was incredible.
“She was able to live a normal life. We travelled, we raised our kids. We did a lot of what we wanted to do when we retired.
“Life became very normal for us. We didn’t discuss her illness very often.”
But while the treatment was effective against her tumours, it also weakened her body and her general health deteriorated.
On December 23, 2003, Sue passed away, aged 57.
Jonathan: “We could both see that her health was deteriorating. She needed a wheelchair, as she could no longer walk for any distance.
“The toxicity of the treatment took its toll. But we lived a good 10 years more together than we thought we had.”
In 2010, new research led to Jonathan being told Sue’s cancer was caused by a faulty SDHD gene.
It meant there was a 50 per cent chance it could be inherited.
Tests were done immediately and while his two older children were clear, both twins had the faulty gene.
Treatments were, by then, less toxic, but in 2011 both twins were found to have inoperable tumours wrapped around their necks.
Jennie’s tumour, which was the size of a golf ball, was found near her jugular vein, which could not be removed as it was surrounded by nerves.
James’ tumour, which was the size of a sausage, is wrapped around his carotid artery, and is too dangerous to remove.
James, a firefighter, also had five non-malignant tumours in his stomach, which were removed.
Jennie, a charity worker who lives in Edinburgh, said: “Because of our experience of seeing our mum living mostly a normal life, I felt a bit of relief, as I knew we could find the tumours early with the scans.
“It didn’t really affect life at the time, it was just something we had to do.”
Jennie had treatment to stop the tumours she had from growing.
But by 2019, further investigations detected 28 cancerous tumours which had spread and metastasised to her bones, like her mum.
Jennie, mum to Anatswa, eight, and Kupa, seven, and married to Ainslie Chinembiri, 39, is now having hormonal treatment to try and prevent the cancer from growing.
And she says her dad – who has been with his current partner, Liz Duss, 72, for 12 years – comes to every consultation.
Jennie says she and her twin brother also realise there could be health implications for their own children, with tests not advised until they are 10.
She said: “My diagnosis was devastating, especially for the kids.
“James and I are always comparing notes, checking that everything is okay.
“We are a really close family and my dad is an inspiration. I feel really lucky to have him in my corner.”
James had major surgery in 2011 and 2018 to remove non-cancerous tumours in his stomach and neck.
As part of the research work at The Phaeo and Para Cancer Charity, James’ tumours were tested in a bid to find a drug or cocktail of drugs that would blast them.
James said he was hopeful that his tumours could help find a cure.
James, who lives in Dundee with his partner Karen Dewar, 38, said: “The research being done is great, it’s positive and fills me with hope.
“I’m glad my tumours can be used for some good.
“It is what it is. We’ve got this faulty gene, and we’re in this situation. But we’re trying to make positive steps to find a cure or medication that can help.
“While I inherited mum’s gene, I’ve inherited dad’s positivity. I have lots of checks, but it doesn’t affect my life and I don’t have any pain.
“That may change, I may have another form of cancer, but I don’t let it affect me.
“Having my family with me has been so great. And as much as it’s not great to have this, it’s nice to have someone like Jennie to go through this with.”
Source: The Sun