hi all I had stage 3c low grade serous last year but after good debulking surgery and follow up surgery last month I’m now NED, I only had one round of carbo and as I’m only 34 not on any hormone blockers. Is it important to find out if you have the gene or not and if so how do you go about finding out?
Thanks xx
I asked my onc this question a few months ago - I am also low Grade (stage 3c) & he said it wasn’t a test he recommended as BRAC gene is associated with high grade OC not low grade.
But I would certainly suggest you ask your own consultant. I would be very interested to see if you get the same answer - I have a 13 year old daughter, so I am naturally concerned for her. X
I think getting genetic testing is very important. My doctor's suggested I get tested. I recommend you assert yourself to your doctor's and tell them you want genetic testing. It's an easy blood test. We have to be our own advocates. I was tested and found I have PALB2 mutation but not BRCA.
I have PALB2 also as do my sister and one daughter. They both had melanoma at a young age. By the way these mutations affect men as well so sons need testing too.
You are the first person I've learned has the same gene. 3 of my daughters were tested and thankfully are negative. My son and other daughter do not want tested. My sister tested positive but my brothers refuse to test. It's foolish to me because if you're positive your children need tested also so they can get care sooner, such as mammograms earlier. My mother had pancreatic cancer so my Drs do keep that into consideration to keep me tested.
Hi. There’s a Facebook group of people with PALB2 mutations if you’re interested. That’s good you’re being monitored for pancreatic cancer. I know there’s a trial at the University of Pennsylvania and possibly elsewhere for pancreatic surveillance. I get ct scans every six months for my OC so hopefully they would catch anything.
I also tested positive to PALB2. My onco suggested I do the test after my first occurrence & informing him of my brother's breast cancer. He also tested positive as did 2 out of 4 of his kids (both opted for preventative double mastectomies & soon to have ovaries removed. One of my sisters tested positive as did her son (1 out of 2 of her kids). My other sister has not tested yet but one of her kids did & was negative. I don't have any kids so thankfully, I don't have that worry. I would insist on the testing, if only to give others in the family a fighting chance against this horrible disease. xxxx
Amen to that. I've tried explaining that to my son and brothers for their children if not for their self. I was given the option for mastectomy but decided not to. Not yet anyway.
Hi..I wasn't offered the test and it wasn't mentioned. But I have a daughter so requested one to put my mind at ease. It was just a simple blood test at Gp and I recieved the result by post.
thanks so much for your replies everyone, I come from a family of woman so it’s probably something I should find out I’ll pop a request in thanks so much xx
I’m low grade 3B Endometroid I live in the states it’s routine to have genetic testing done mine all came back negative
Hi, I am stage 4 Grade A high grade OC. I am the fourth of cousins on my fathers side to get OC. My oncologist referred me to the genetics team at Nottingham even though we were cousins not siblings. It transpired that I have inherited BRIP1 from my father. The genetics team were brilliant and sent me paperwork that my family members could use to take to their GP, men and women to request a test. So, I would definitely pursue this either with your oncologist or GP. Good luck xxxx
Hi
My oncologist referred me for genetic testing to the local genetics centre in Oxford. I had to complete a long form about my family history of cancer. In my case there wasn’t much to tell. I was concerned because I have two daughters.
They only seem to test locally if you have some indication that your cancer might be genetic. Although I have tiny risk ( my grandfather died of lung cancer, but this was probably through heavy smoking) I have had two different cancers, colon cancer 12 years ago and this 3b serous epithelial. I was tested and they found no genetic link. My daughters spoke to their GP who said she could refer them but decided to wait until my results came back, so they did not go ahead.
Interestingly, although my husbands sister, mother and father all died from cancer, ovarian, pancreatic and prostate, they did not seem to feel this was relevant and I still don’t understand why.
I’m sorry, I don’t want this post to be about me, but to help guide your journey and furnish you with questions to ask. If you have a clinical nurse specialist, run it by her. All the best, I hope you get some answers X
Hi. Not to be a busybody but your husband should get tested so then if he carries a mutation your kids could tested. Those cancers are the ones that are often genetic. Xx
I think it is a good idea to ask for the test.I was diagnosed over 5 years ago with OC. There was no history of OC or breast cancer in my family so I didn't even think to ask for a check.
However just before my debulking surgery I was asked if I would take part in the Genome 1000 project for research.Of course I said yes so several tests were carried out.It came back that I was BRCA 2+ so this was a huge shock.
The good that has come out of this is that I am now taking a Parp inhibitor which I understand works very well for BRCA patients .I have felt really well.Blood tests all good.
thanks for this, I’m the same there’s no history as far as I know it was completely out of the blue. I didn’t realise could help with further treatment either I’ll ask the oncology team next time I’m there. Thanks so much all of you for your comments I feel abit daft really becasue I don’t really know that much about my own cancer.
Dear Mrs_Thomas,
Thank you for your post and reaching out for some advice around genetics testing. I can see that many of the forum members have replied sharing advice and support, I hope this has been helpful for you.
We have published a post previously on genetic testing, please see the link below if you would find this useful.
ovacome.org.uk/Blog/genetic...
We also have some information booklets on genetic testing for BRCA 1 and 2 gene mutations, and Lynch Syndrome on our website. Please find the links below if these would be helpful.
ovacome.org.uk/testing-for-...
ovacome.org.uk/lynch-syndro...
I am sorry to hear that you feel a bit daft as you feel you don't know much about your type of cancer. We have an information booklet on Low Grade ovarian cancer that you might find helpful. Please see the link below.
ovacome.org.uk/low-grade-bo...
You may be interested to know that we run a monthly online support group for people diagnosed with rarer ovarian cancers. The group is a safe space for people in similar circumstances to share support, advice and experiences. The next group is on Thursday 9th March at 2pm until 4pm, if you would like some more information or would like to sign up, please see the link below. Please don't hesitate to contact us if you would like some more information on how the groups runs.
ovacome.org.uk/Event/rarer-...
Please know we are here to support you. If you would like to discuss anything further with the information shared above, please do get in touch with us. We can share information, offer support and a friendly listening ear. You can drop us an email to support@ovacome.org.uk or call us on our support line on 0800 008 7054. We are here Monday to Friday, 10am to 5pm.
Best wishes,
Sorcha
Ovacome Support
Yes, it's important to get tested. Even if there is no family history, you may have what is called a 'de novo' mutation (i.e. a new mutation). Your GP or your consultant can refer you to genetics, where they will take your history and your family history, if relevant, and advise you how to proceed. I don't have a BRCA mutation, but I do have Lynch syndrome, which predisposes to bowel, endometrial and ovarian cancer, as well as several other uncommon cancers.
I got blood tested for BRCA even though I had low grade serous -my sister had breast cancer too but there was no mutation. I would like to get my tumours further tested for all the other mutations . The Bouquet trial does this if there’s a recurrence. Professor Gourley in Edinburgh ( the LGSOC specialist) suggested this.
I was offered it because lm high grade 3 serious but if lm honest dont really know what high grade serious really is. But thankfully l came back clear think it is a good idea to know and l was so shell shocked about everything at the time didnt really ask enough questions. Good luck .SheilaFxxx
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