Gene testing.

[Ladyone1]

Hi I had borderline ovarian cancer stage 2c, had TAH last July, my sister also had a borderline tumour but only had one ovary removed, should we be gene tested.

[Zannah]

You can ask your GP but I think they may say that you need two close relatives who have had either breast or ovarian cancer. I'm sure Ovacome will have the correct information on this.

Best wishes,

Zannah x

[hellwen]

Hi,

I had the gene test with only one known relative having had cancer. I think onc said it was also because it was serous or something too as this must also be more common with the gene related cancers.

I have ages to wait though - it takes 8 weeks!

Best wishes,

Helen x

[sharonforce]

Under the latest NICE guidelines (June 2013) you can request genetic testing through your gp or your oncology team. You would first see a genetic counsellor who will advise you about genetic testing and you can then decide if and when you want to go ahead and be tested.

I come from a very large family with only two instances of breast or ovarian cancer and I was tested and found to have the BRCA mutation.

In my area and also at the Royal Marsden Hospital they are offering genetic testing to all women with ovarian cancer.

Have a look at Ovacome's page on hereditary cancer:ovacome.org.uk/about-ovaria...

Also Macmillan have an online tool called OPERA that you might want to look at. OPERA (Online Personal Education and Risk Assessment) asks you some specific questions about your personal and family history of breast and ovarian cancer; it then summarises your answers, and gives you your 'personal assessment', which includes personalised information and support about inherited cancer risk. opera.macmillan.org.uk/

I am happy to answer any questions you might have about testing etc.I also run a support group for anyone affected by the BRCA mutation whether they have been tested or not.

best wishes

Sharon

[Mamamcspud in reply to sharonforce]

Hi sharon, can I ask you about having BRCA mutations testing on the nhs please? My cousin is living in at Albans and has triple negative breast cancer diagnosed in her early 30s. My sister has recently been diagnosed with stage three c serous high grade ovarian cancer and has been found to have a variant of uncertain significance. We paid to have this done in Ireland (otherwise we would be waiting 13 months to be even seen by genetic counsellor) but they want my cousin with breast to be checked ASAP for this varriant and she hasn't been able to organise this as yet? Have you any advice as to who could help. I believe she has spoken to her breast care nurse about it. They are keen that this be done ASAP as if she has the sane varriant then they will want to test the rest of us and if we too have the sane may want to consider prophylactic surgery etc. my sister is 34 and my cousin was 32 like you they are the only two affected but it may well be that this varriant is significant. I am so anxious to get this done ASAP as they won't test us as they can't advise us until they have those results. If the nhs is similar to the Irish public system it could be a year before I know and I will be over 35 then myself. I would hate to find myself with ovarian cancer if there was something I could have done to prevent it. God knows our family is going through enough as it is without more people getting sick. Thankfully my sister is doing so well and is an inspiration to us all in terms of how brave she has been! We have sent blood to dr swisher in Washington on my sister to see if they can come up with any more advice on my sisters varriant or possibly find another oncogene that may explains what has happened. I am very clear on what I want if I'm BRCA positive. I have three beautiful little girls and feel very lucky to have completed my family so if it was needed for my to hand an oophorectomy then I would see that as no big deal when I see what my sister has had to face although of course it is no small deal it's just in comparrison to her if she can be brave then so can I ( I hope!)

[sharonforce in reply to Mamamcspud]

Has your cousin's breast care nurse referred her to see a genetic counsellor? If not your cousin needs to request this either through her oncologist, her clinical nurse specialist, or her gp. See the NHS information here nhs.uk/Conditions/predictiv...

Hope this helps.

[Mamamcspud in reply to sharonforce]

Thanks sharon. Yes she has but she hasn't been told how long it will take to see them so I suppose I'm just wondering will it be a years time before we will know any more. My cousin is pretty poorly to be honest so she can't travel into London to see private gentic counselor unfortunately so we will just have to wait. I hope it wing bd over 12 months to see a genetics counsellor. My cousin has been battling with this cancer for nearly 9 years now and has a lot of metastatic disease.

[Khan246]

Hi. You might find this website useful.

macmillan.org.uk/Cancerinfo...