'Nobody can imagine the pain' - Woman who made decision to have breasts removed calls for greater psychological support for cancer patients
A primary school teacher has opened up about her experiences of being diagnosed with a genetic cancer gene and called on greater psychological support for cancer patients.
Róisín Prizeman from Dublin, is a peer support volunteer at the Irish Cancer Society, spoke candidly this afternoon about her own experiences in having surgery to remove her womb and both breasts.
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She underwent several surgeries in order to reduce the risk of developing breast cancer after she was diagnosed with BRCA1, a cancer gene.
"Nobody can imagine the pain of making a decision and facing a surgery to have your breasts removed or that people go through that and the surgery might be cancelled, there are no psychological services offered to people," she said tearfully today.
"We really really need to understand the needs of this cohort of people we are growing in numbers," she said.
Róisín lost her mum when she was four years old to breast cancer and her sister and several aunties have tested positive for breast cancer also.
"[My sister] went on to have biological masectomy and she was re-diagnosed with breast cancer at age 42, which was horrific," she remembered.
"At that stage, she went for genetic testing and discovered that we had this BRCA1 gene in the family."
Ms Prizeman then tested positive for the gene also and began having risk- reducing surgeries, starting with a full hysterectomy in 2011, where her womb was removed.
"I didn’t receive any form of counselling around having that elective surgery. Years later I discovered that I probably should have been on medication to protect my heart health and bone health," she explained.
"I didn't know that and I wasn't told that. Post surgery, I had very aggressive menopause was very difficult was not something I was advised on."
"It's just not something that is talked about."
Two years later she had her breasts removed and noted that there were "gaps" in her care, as she only had one consultation and no counselling before or after the surgery.
“Over the last year in particular, I've been increasingly concerned in the decline in genetic cancer services," she said.
She said that there is a lack of investment in genetic cancer services and psychological support for cancer patients or those who have tested positive for a genetic cancer gene.
"When a woman tests positive for a BRCA mutation, and I have spoken to women who have been told this, ‘out you go, have your kids and come back and get your ovaries out’ .
"How on earth are you supposed to actually assimilate that kind of information and make those decisions with no support?" she said.
"We absolutely need to have those services put in place."
The Chief Executive of the Irish Cancer Society Averil Power said that there needs to be a full implementation of 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," she said.
"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."