“It came out of a clear blue sky” recalls Andy. “It was ridiculous. I was such a fit guy. I’d done the Leicester marathon just a few weeks before”.
Andy’s shock at being diagnosed with prostate cancer hasn’t waned, four years since he was taken to hospital after collapsing following a 10 mile run. As a fit and otherwise healthy man, with no symptoms or obvious family history of the disease, the news came as a complete shock to him and his family.
This sense of shock will be shared by many who have received a diagnosis of prostate cancer. The disease is well known for showing few, if any, symptoms until a relatively late stage. “There was the odd time at the [Leicester] City matches when you’d hear the crowd start to get excited and you’d think to yourself ‘I’m taking a long time to have a wee!’ but then you’re off again. There was nothing obvious”.
After collapsing, Andy was taken to the Leicester Royal Infirmary. “The next morning they took me for a scan and said ‘you’ve got prostate cancer. It’s spread and it’s gone into the bone’”.
After several rounds of chemotherapy, Andy’s cancer has proved too advanced to treat. He is now receiving palliative care at LOROS.
But despite this, thanks to genetic testing, members of Andy’s family could be spared his trauma of receiving a late stage diagnosis. Genetic testing can reveal if Andy’s family members might have an increased risk of developing cancers, which in turn could lead to regular monitoring and potentially earlier treatment if a cancer develops.
Professor Julian Barwell, Consultant Cancer Geneticist at University Hospitals of Leicester, where Andy underwent his testing and treatment, explains: “When Andy’s tumour spread, we sent a sample of it for genetic testing to determine what had caused it. The result revealed a clear change in a gene called BRCA2. We then offered him genetic counselling and a blood test to determine if this had been inherited.
If we identify a gene change via a blood test – as we have in Andy’s case - we often ask the wider family if they would like to undergo genetic testing. If they do, we can then work out whether they too carry the altered gene and are therefore at an increased risk of developing either breast, ovarian or prostate cancer in the futureProfessor Julian Barwell, Consultant Cancer Geneticist at University Hospitals of Leicester
Cancer is not usually inherited, but some types – mainly breast, ovarian, colorectal and prostate cancer – can be strongly influenced by genes and can run in families.
We all carry certain genes that are normally protective against cancer. These genes correct any DNA damage that naturally happens when cells divide.
Inheriting faulty versions or "variants" of these genes significantly raises your risk of developing cancer, because the altered genes cannot repair the damaged cells, which can build up and form a tumour.
BRCA1 and BRCA2 are genes that raise your cancer risk if they become altered. Having a variant BRCA gene greatly increases a woman's chance of developing breast cancer and ovarian cancer. They also increase a man's chance of developing male breast cancer and prostate cancer.
As a result of Andy sharing this result with his family, his brother went for screening and was diagnosed with prostate cancer at a much earlier stage than Andy had been, and was able to be monitored and enter treatment much earlier than his younger brother had.
Despite the grief Andy feels following his diagnosis, he does see a silver lining for his family as a result of genetic testing. “With four sons, I think there’s a strong chance that it’s going to be involved somewhere. But testing could save their lives, could stop them going through the awful times I’ve been through. I can protect them with this knowledge.
I’m thankful that I’ve been able to go through genetic testing. I can perhaps help my family. What better legacy than giving the gift of life?Andy, Prostate cancer patient, Leicester
Alongside his role at UHL, Professor Barwell is also Clinical Lead for United Against Prostate Cancer (UAPC), one of several local projects run by NHS East Genomics. UAPC is part of a national pilot project including clinical genetics, pathology, urology, molecular genetics team and community stakeholder groups to establish genetic testing of prostate tumour tissue samples to help identify the causes of this disease in patients and support them and their families. This could be useful in planning their treatment or determining if their relatives could also be at an increased risk of breast, ovarian or prostate cancer.
Professor Barwell continues: “Genetic testing of tumour tissue is really rather new, and we hope in the future to develop better treatments for a number of different types of tumour. In terms of genetic testing, prostate cancer is the start, but we hope to offer additional tests on a number of different types of tumour, both here at UHL and across the country”.
It has been a privilege to support Andrew and his wife through the genetic testing process. It was a difficult journey for them, but from the very first moment Andrew told me he was determined to do everything that he could to help his sons and family. He also explained that, in one sense, his diagnosis was a relief, as he has been able to pass this message on to his children so that they can start screening earlier if necessary, and potentially prevent them from a situation like the one he had to go through.María Echevarría Gutiérrez, Genetic Counsellor and UAPC project lead.
Jo Lowry, East GMSA Regional Programme Manager, said: "What an emotive and powerful story! I am so pleased we were able to offer genetic testing to Andy through the UAPC pilot project and hope that the genetic test results can help protect his family for generations to come".
Despite all the fears, questions and uncertainties following a cancer diagnosis, there is one thing that Andy is absolutely certain about.
“My message to men is get tested. You’ve got to find out if you have the gene. You owe it to your family, to understand and make sense of everything. If it is bad news, at least you’ve got a fighting chance, if you understand what’s going on”.
Contact UAPC@uhl-tr.nhs.uk to find out more about our United Against Prostate Cancer project