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Ovarian Cancer

Family history and genetics

Cancer is very common: about one in two people born after 1960 in the UK will be diagnosed with some form of cancer during their lifetime (Cancer Research UK 2016). Many people have a relative who has had some sort of cancer, but only breast cancer, and more rarely bowel cancer, have any known links with ovarian cancer. Some ovarian cancers are caused by an inherited faulty gene (called BRCA1 or BRCA2), which can also cause breast cancer. Research has shown that 20% of women with high-grade serous ovarian cancer (HGSOC) carry a BRCA gene mutation* Even fewer are associated with a gene (called HNPCC) that causes bowel cancer and cancer of the endometrium (the lining of the womb).

Several women we talked to knew that one or more of their relatives had had either breast or ovarian cancer, although others pointed out that it was sometimes hard to know if relatives had had gynaecological cancers, since it had not been openly discussed in the past.

Some doctors had mentioned the possibility of a genetic link and some women were convinced that it was the cause of their cancer. Women tended to discuss with family members the possibility of a genetic cause of their cancer because of the implications for close female relatives. Relatives' responses were important influences on women's decisions as to whether or not to have a genetic test. Some found that their relatives (especially younger people) did not want to discuss genetic testing.

 

She discussed a genetic cause with her family and decided against being tested for a faulty gene.

She discussed a genetic cause with her family and decided against being tested for a faulty gene.

Age at interview: 59
Sex: Female
Age at diagnosis: 59
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I did think about whether to see whether I'd got a gene that, you know, my daughter may have inherited. And I talked to my sister who has had breast cancer, and we talked about it together and apparently her daughter had talked to her and said that she hadn't wanted to have any tests, you know, to see whether she'd got this gene. I haven't asked my daughter but I've actually decided to put it on hold and maybe think about it later. She's an intelligent girl and I think that she's probably already read that you can have genetic testing and so we've put it on hold, I've put it on hold and I'm sure she has mentally.

Most women with ovarian cancer who have a significant family history of ovarian and or breast cancer will have access to genetic testing in the NHS. Several women we talked to had been tested for the faulty genes and were awaiting the results. One woman could not get a test on the NHS and had it done privately.

Some women were being screened for breast cancer as a result of their genetic consultations, and some of their relatives were also being screened for breast and ovarian cancer. One woman's sister was found to have an early form of breast cancer as a result of being screened, and then other female relatives were also screened. Another felt guilty that her daughters needed screening for breast and ovarian cancer, after already being screened for bowel cancer because of a family history.

 

Her sister was screened and pre-cancerous breast disease was found, prompting other relatives to...

Her sister was screened and pre-cancerous breast disease was found, prompting other relatives to...

Age at interview: 33
Sex: Female
Age at diagnosis: 30
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But because I went to a geneticist and because the ovarian cancer cell gene is on the same one as the breast cancer gene, I got a mammogram, and I was also advised that my sister, because I have one sister, should get a mammogram too. So my sister who's thirty-eight had a mammogram a year ago and unfortunately breast cancer was diagnosed and she got an operation, radiotherapy, and she now will get mammograms and ovarian screening too.

So both of us are registered for the mammograms and ovarian screening. The one good thing that you must say about my sister is the fact that it was pre-cancerous cells that were found and the excitement of the breast cancer doctor was basically the fact that screening, breast cancer screening saves lives. And at the end of the day my sister was thirty-eight and might not have developed a lump for another ten years, it might not have been found, it might have spread, so I think you have to look at the fact that, you know, she was actioned very quickly, but it does make us think that perhaps, I mean evidently there's only 10% of ovarian cancer is genetic, but it does make us think that perhaps it's our genes that have given it, you know, both of us, or else we're just very unfortunate. But my sister, my cousin, I have one female cousin on the same side of the family and I have one niece, so they will get ovarian screening and mammograms as well.

 

Felt guilty that her daughters now have to be screened for ovarian cancer as well as colorectal...

Felt guilty that her daughters now have to be screened for ovarian cancer as well as colorectal...

Age at interview: 64
Sex: Female
Age at diagnosis: 59
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And of course now the thing that really upsets me is that now my daughters, who are in a screening programme for colorectal cancer because I am a risk and their father died of it and their grandmother died of it, and their maternal grandfather died of it, that's my father, so all my family are already in a colorectal screening, and now the girls need to have ovarian screening which, which they are doing. And again that's through, through my surgeon and his unit. They're having to be screened for the ovarian cancer, which is tough on them. I feel rather guilty about doing that to them. 

Two women we talked to had been found to have one of the faulty genes, so their sisters and children were being tested. Both felt that finding out they had a faulty gene would benefit future family members. One woman's son refused a genetic test, although his sister and brother were tested and found clear. The other woman's sisters were being tested for the genes and screened for cancer. The offer of an operation to remove her breasts in order to reduce her risk of developing breast cancer had upset her.

 

Some of her children were tested for the faulty genes and she feels this benefits the family.

Some of her children were tested for the faulty genes and she feels this benefits the family.

Age at interview: 71
Sex: Female
Age at diagnosis: 66
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But we were very concerned that five granddaughters would need to be tested as they grew up because it was noted that although my sister and I had had ovarian cancer, it did closely relate to having breast cancer and I still have quite a high chance of developing it, if I live to be eighty. Anyway the gene was discovered and once that had been identified we had our children tested. They all went to see the consultant and had it all explained to them. Unfortunately my eldest child decided that he and his wife really didn't want to know, and so he left, but we're delighted that my natural daughter and son have been shown to be clear.  

And knowing that there's a gene in my family of course now, in a way it's almost helpful to have discovered it, and hopefully we can help the next generation by, if they have any problems you know they'll be referred earlier for diagnosis.

 

Being offered an operation to remove her breasts to reduce her risk of developing breast cancer...

Being offered an operation to remove her breasts to reduce her risk of developing breast cancer...

Age at interview: 44
Sex: Female
Age at diagnosis: 41
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And I also have regular mammograms, regular check ups as well for breast cancer. The latest thing with the breast surgeon is they are asking me to consider to have a prophylactic double mastectomy, which is something I'm not willing to consider at the moment, but obviously I haven't sort of closed the door completely on it. And I will continue to be, I think, breast aware and I'm obviously more aware with the ovarian cancer now anyway.  

I think, I've only just had my last consultation with the breast surgeon, he wanted me to think about it, and I was quite adamant I wasn't even going to think about it, I was Mrs Angry actually. And when I went two weeks ago to see him he introduced me to a plastic surgeon and two other doctors, and another nurse, and it was really intimidating, and I was really angry and my anger came out in tears.

And that's probably the first time I've cried over the whole thing, but I was angry that they were putting me in this position, you know, explaining to me about reconstruction and I just, you know, I'm just not willing to consider it. I think for myself, but also for my family, I think that, you know, they're just pleased that I'm now back to normal after everything else and I can't put myself or my family through that. You know, that doesn't mean that I won't consider it in the future. At the moment I'm saying 'no' but, you know, if I had a scare or, you know, if I felt stronger mentally and physically, I might consider it.

A couple of women worried about the implications of having a genetic test. One thought that knowing they had the gene might be frightening. Another thought having it in their medical records might cause difficulties in the future, for example with insurance.

 

Talks about her family history and her concerns about being tested for a faulty gene.

Talks about her family history and her concerns about being tested for a faulty gene.

Age at interview: 66
Sex: Female
Age at diagnosis: 56
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I haven't been offered a test. I did mention it to my oncologist that when my sister was diagnosed, because she's eight years younger than I am, so it was quite far into my experience, and he said "Oh perhaps I should mention this." He did take a note of it but I don't know, with only the two of us perhaps it's not sufficiently interesting. As far as I know I'm the first member of the family to have, that we know inside about three generations, to have ovarian cancer, although it might have been misdiagnosed in, you know, perhaps because it shows up in different places. 

I know of nobody in my family until my sister who's had breast cancer, so the two of us have turned up, you know, in one generation.

So, you know, I, I think the idea of the genetic testing is an important one but of course it's not one which is recommended is it to sort of everybody because it can be, it could be a frightening, it's better to think 'well I've got a one in however many chances' than to think 'it's very likely' I think. 

Women suggested some potential benefits for family members who chose to have a genetic test. For example the person would be likely to identify the disease at an earlier, more treatable stage because they could watch their health more closely and be screened earlier in life. One woman explained that her daughter might choose to have her own children in her 20's rather than later. Also women who learnt they were at high risk could choose to have their breast or ovaries removed before any disease developed, perhaps once they completed their family. A woman who had kept her ovaries after hysterectomy said she would advise her daughter against doing that.

*J Clin Oncol 33, 2015 (suppl; abstr e16532) 


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Last reviewed June 2016.
Last updated June 2016.

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