The National Institute for Health and Care Excellence (NICE) are developing guidelines for ovarian cancer: identifying and managing familial and genetic risk.
They have published the draft guidelines which you can read and comment on until 5pm on Friday 27 October 2023.
The guidelines, further information and comment form are all on the NICE website here:
If you prefer, you can send your comments to us for inclusion in our submission. If you are doing this, please could we receive your comments by Friday 20 October 2023?
Please don't hesitate to get in touch if you have any queries. You can leave a comment below, direct message us through the forum, or email support@ovacome.org.uk
Best wishes
Anna
Ovacome Support
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Hi Anna, thanks for sending this. I skimmed through to bits that were relevant (56 pages!). It would help to know what has changed?
I am BRCA 1+ My daughters have not been tested (their choice). My elder daughter went to genetic counselling but it scared her and she hasn’t followed up (now 32). So I thought the support and ongoing surveillance ideas were good and the commitment to ask about mental health at each appointment. But as we know this often doesn’t happen in practice.
I know they are very keen to get women to accept risk reducing surgery but child bearing is already such a high pressure subject for most young women that this needs to be handled sensitively.
I applaud the focus on cluster communities such as Ashkenazi Jewish people and on those women who might struggle to access good information.
They have focused on women with close relatives affected but I wonder if this may close down access for some, where a relative doesn’t share their BRCA status or families with high numbers of OC diagnoses who haven’t been tested?
I wasn’t sure I could comment further without knowing what’s been left out if anything?
Thank you very much for such a helpful response. These are new guidelines rather than an update to previous guidelines so it's not that there have been changes made, rather that they are developing some ovarian cancer specific guidelines in this area.
I hope that is useful, if there is any other information that would be helpful please do let me know.
It is encouraging to see such a detailed and comprehensive review.
As I am doing n the middle of this process. Somatice tumour BRCA2 mutation. Recentlt had reported by telephone from the medical oncologist the germline results. Germline shows no BRCA2 mutation but a less prevalent RAD51D one.
I don’t have a genetic counsellor consultation until November. I have dinner acuses with my daughter and sister but have yet to tackle the conversation with my sister.
Provision of coaching pre sharing of this highly impactful information if preferable. This requires further recruitment and coordination of appointments. I would suggest booked a geneticist appointment alongside the blood draw as both take approximately 3months. If the results show no cancer driver mutations the geneticist could be cancelled and the results related by the oncology clinician.
My mother died in 1952 age 32 of breast cancer, GP didn’t sent her soon enough to hospital! I was 3 years of age and left with no other close female relative. My Grandmother died when my mother was 10 years no idea of why she died young as couldn’t trace her death records when I tried in 2005 as I then had breast cancer (annual monogram check) age 57 years.
During my lumpectomy, chemotherapy and radiation treatments I mentioned my above history but wasn’t able to have testing for BRAC gene as not enough family, me and my mother wasn’t enough for eligibility?
No one mentioned to me risk of Ovarian Cancer of which I had no knowledge ( little internet then).
2017 I was diagnosed with Ovarian Cancer, I was very lucky with my GP. after debulk op and chemotherapy my oncologist arranged for genetic testing and I am BRAC2. Last year I had a recurrence had chemotherapy and am now on Olaparib.
My daughter was gene tested in 2018 and is also BRAC2. She had keyhole day surgery last month to have her ovaries and tubes removed, age 46.
If I had the knowledge of the breast cancer link to OC and had genetic testing offered in 2005. Offered the same surgery as my daughter I would have surgery.
It would have saved me all I have gone through and are still going through. At a very great savings for NHS/ government.
it’s hard to comment on the guidelines , but that is my history/story.
Thank you so much for taking the time to share your story. I am very sorry to hear about the death of your mother at such a young age, when you were just three years old.
I hope your daughter is recovering well after her risk-reducing surgery last month.
We are here to support you and your daughter so please don’t hesitate to get in touch with us if you need any information or want to talk anything through.
Thank you again, we really appreciate your comments.
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Ovarian Cancer and any links to polycystic ovaries ? 
