Jewish Health

Feelings about diagnosis

Cancer
Several women who were diagnosed with breast cancer or ovarian cancer talked about feeling numb, shocked and a few felt angry and asked ‘why me?” Karen said “you never in a million years think it’s going to be you.” Sheila’s mother had survived breast cancer which gave her confidence that she too would survive it but she still felt very worried. David felt “diabolical,” when he was diagnosed with multiple myeloma.
 
Being diagnosed with BRCA susceptibility genes
Ashkenazi Jewish women have a higher prevalence of carrying a mutation on the BRCA1 or BRCA2 gene, which means a higher risk of developing breast or ovarian cancer. Caroline initially wasn’t too bothered when she discovered she had the mutation because it was “just some numbers and letters” but later felt scared once she read more about it. Hayley said, “They give the statistics and that’s what really rocked me” when she found out that she had an increased risk of developing breast cancer and ovarian cancer. Michelle described how “horrendous” it was to find out that she was a carrier of the BRCA2 mutation when she had breast cancer because she was unaware of any family history of cancer.
 
After the initial shock, most women were grateful that they were now aware of the greater risk to themselves and to their children and that they had the opportunity to do something preventative.
Several women were concerned about whether the gene had been passed to their children and when to talk to them about being screened (see Genetics and Inheritance 2: BRCA mutations and BRCA mutations and preventive surgery).
 
Crohn’s disease
Sylvia, who was diagnosed with Crohn’s disease over 30 years ago was given little information at the time so she said “she just got on with it” and treated it with a low fibre diet. Sometimes it can take a while for Crohn’s disease to be diagnosed and when this was the case, people felt relief to finally know what was causing their symptoms.
 
Some people were diagnosed with Crohn’s disease when they were teenagers or young adults. Riva felt that getting Crohn’s as a teenager affected her education and her future plans. Marcel had found it helpful at the time to speak to the psychiatrist attached to the hospital. Linda said she hadn’t really understood the implications of Crohn’s disease and that her parents were more traumatised than she was about her diagnosis. Sara was devastated when her twelve year old son was diagnosed and she found it difficult to cope.
 
Gaucher disease, Torsion dystonia and Factor X1 deficiency
Type 1 Gaucher disease is the most common genetic disease amongst Jewish people (see Jewish Genetic Disorders UK). The symptoms of the disease are very variable. Gary was diagnosed with Gaucher disease 18 years ago when little was known about it. He was shocked when he was told he only had between five and seven years to live.
Torsion dystonia is a movement disorder involving uncontrollable and sustained muscle contractions resulting in repetitive movements and distortions of the body. Now aged 39, M was diagnosed with Torsion dystonia when he was sixteen years old. He was told it would get progressively worse and there was no cure. Since then he has had deep brain stimulation which has helped his symptoms enormously (see Treatment).
 
Factor X1 is produced by the liver and is part of a chain of clotting factor responsible for stopping bleeding by forming a clot after an injury or surgery. Although he had always bled and bruised easily from an early age it was only when Helen’s husband, Ivor, had a hernia operation at the age of 70, that he discovered he had Factor X1 deficiency.
 
Tay Sachs and Cystic Fibrosis
Miriam discovered she was a Tay Sachs carrier when she was sixteen years old. Both parents have to carry the gene for there to be a possibility of their child having it. The condition is degenerative and children often only live for 5-8 years. At the time, Miriam wasn’t too concerned and felt that as long as she didn’t marry a carrier there wouldn’t be a problem with her having children in the future.
 
Katy was pregnant when she discovered she was a Tay Sachs carrier. She was initially very concerned to find out if her husband was also a carrier, but she no longer worried about it when he was found not to be.

Discovering that they were both carriers for the cystic fibrosis gene was very confusing and “pretty horrific” for Aaron and Rebecca. They were worried about what would happen after their child was born. However the professional help they received in the first few weeks after their daughter was born was “incredibly helpful”. 

Last reviewed September 2015.
Last updated June 2013.

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