Imagine making the decision to have your womb or breasts removed without enough psychological support
Families across this country are being let down because of a crisis in genetic cancer services. Lack of progress on National Cancer Strategy deeply alarming, says Irish Cancer Society
The Irish Cancer Society has today warned that a lack of investment in the National Cancer Strategy is leading to the unnecessary distress and suffering of cancer patients.
A woman who tested positive for the cancer gene, BRCA1 and had radical surgery to remove her breasts and womb says that families are suffering agonising waits for genetic testing because of huge gaps in services and are not receiving adequate psychological support.
Róisín Prizeman, a mother of one and primary school teacher from Dublin, has endured the experience of having her mother, her sister and six aunts being diagnosed with either breast or ovarian cancer. Faced with the potential of a family cancer gene, she elected to be tested to see if she too would face the illness. Upon discovering she tested positive for the BRCA mutation she underwent two surgeries which removed her womb and both breasts. Following the positive diagnosis of the cancer gene and before undergoing the hysterectomy and a double mastectomy in 2011 and 2013, Róisín received just ONE counselling session. She feels this gap in services has major repercussions for a patient’s recovery.
Róisín who is now a peer support volunteer says: “I have spoken to women who have received no counselling at all in advance of deciding to undergo a surgery which can bring on long recovery times and aggressive menopause. I have also met families who are suffering agonising waiting times for genetic testing or for surgeries. We have seen a decline in Hereditary Cancer Services with some clinics even closing temporarily in the last year.
“While my medical team were absolutely excellent, there were gaps in the service, and those gaps have grown much bigger in recent years. Families across this country are being let down because of a crisis in genetic cancer services.”
Calling for more funding for the full implementation of the National Cancer Strategy, Averil Power, Chief Executive of the Irish Cancer Society said:
“We are deeply alarmed that the Government has consistently underfunded the National Cancer Strategy.
“We have heard of the heart-breaking and frustrating experience of Róisín who had to wait almost a year to find out if she carried a cancer gene. When she was finally in the system, she didn’t get the psychological support she needed. Roisín’s experience is being mirrored by the hundreds of people on genetic service lists today.”
“Imagine someone in your family was waiting for a year to find out if they carried a cancer gene which could potentially affect many members of the wider family. Imagine the sheer stress and worry of not knowing and having your lives put on hold. Or imagine having to take the decision to remove your breasts or womb and enter into aggressive menopause without feeling you have had enough professional psychological support.
“If the Government doesn’t allocate enough money in Budget 2020 to the National Cancer Strategy these issues are going to get worse. More funding is required to give people proper support during their treatment.”
In a call for increased funding for cancer services overall, Power also drew attention to several cancer services that are now performing worse than before the National Cancer Strategy was published in July 2017.
“It’s hard to believe but some cancer services are now struggling more than before the Strategy was published in July 2017. The HSE issued a stark warning in the Services Plan last year that not enough money was being provided to meet demand for cancer tests and treatments in 2019. Unfortunately, this is now being felt by patients right across the country at one of the most vulnerable times of their lives.
“It doesn’t need to be this way. Budget 2020 gives the Government an opportunity to meet the needs of cancer patients and survivors who deserve better. This chance cannot be missed.”
If you or someone in your life are waiting for genetic testing relating to cancer, we would love to hear from you. Your story will help us spread awareness about the issue and make change happen. Email us today.