Ovarian cancer can be caused by changes in genes called 'hereditary mutations'. These gene changes can be passed down from the mother or the father to daughters or sons and cause cancer to run in the family.
One out of every eight women with ovarian cancer carries a hereditary mutation.
If you or any family member has had:
~ ovarian or fallopian tube cancer at any age
~ breast cancer at age 50 or younger
~ breast cancer in both breasts at any age
~ both breast and ovarian cancer or both colon and ovarian cancer
~ male breast cancer
and if more than one family member on the same side of the family has had any of these cancers:
~ breast cancer
~ ovarian or fallopian tube cancer
~ uterine cancer
~ colon cancer
~ prostate cancer
~ pancreatic cancer
See a genetics expert, visit the FORCE website facingourrisk.org , or contact me for further information. Or use MacMillan's online tool Opera to check your risk: macmillan.org.uk/Cancerinfo...
If you test positive for a gene mutation, there are options available for you and your family members to lower cancer risk.
Written by
sharonforce
To view profiles and participate in discussions please or .
Thanks so much for posting this up. The good thing about hereditary conditions is that there are good treatments available - PARP inhibitors and these seem to be very effective.
I've just had a check and was found not to carry the BRC1 gene. It's good to be forewarned as we can take precautionary steps to lower the likelihood of Ovarian Cancer. Apparently the pill that stops ovulation is thought to be good as it reduces the number of ovulations over a lifetime.
As my grandmother had breast cancer in both breasts the opera tool says that I may have inherited a duff gene, but my gynae oncologist says that as a grandmother is a second degree relative rather than a first degree relative I am not eligible for any genetic counseling on the NHS.
You are eligible for testing or at least to be seen by a genetic counsellor for advice. My mother has never had cancer - although we have now found out she has the gene. My grandmother (her mother) had cancer. I was tested on the NHS. I did have to push for it though - it wasn't offered. Ask either your oncologist or your GP to refer you to a genetic counsellor. Tell them that you have completed the MacMillan tool (maybe print out your results) that advises further investigation.
If you have any problems get back to me - i am in regular contact with the genetic counsellors in my area.
Already did that, print out and all. Was still refused by my oncologist. I suppose I could try my GP, but suspect that without my oncologist's backing I won't get anywhere.
I think it is possible my mother has cancer - in the past 18 months she has developed a very severe skin disorder which looks like it may be paraneoplastic in origin - but she is 88 and is suffering from advanced Alzheimer's, so would be unlikely to be able to cope with any of the possible treatments, other than symptomatic treatments which she is getting anyway. I don't think that anyone thinks it would be worth putting her through sufficient diagnostic tests to find out. Having had to nurse her through her last hospitalisation (for an open fracture of her wrist) a little over a year ago, I tend to agree that she simply couldn't cope with any further hospitalisation. Neither she nor I got any sleep for 38 hours, apart from the brief spell when she was given a general anaesthetic so they could reduce the fracture, and I didn't manage to leave her side for more than an hour and a half without the hospital ringing me with the request that I return immediately as she wouldn't settle without me. After 38 hours they decided that she needed to be sedated, both for her sake and mine, not to mention that of the nursing staff! Hospitalisation increased her confusion - already pronounced - at least 100% and made her totally miserable. None of us really wants to put her through that again.
Barbara, what a difficult time for you and I can quite understand you don't want to do anything to upset your mother.
I hope your doctor will refer you to see a genetic counsellor. They can give you advice whether or not you decide to have the test. If not maybe you can contact the clinical genetics team for your health authority for advice.
I am BRCA2+ Had tried for 2 years to get on a PARP inhibitor. The problem was I have Primary Peritoneal type ovarian which rarely comes back as a measurable (1cm) tumor. Finally managed to get on a phase 1 rucaparib/carbo chemo trial. Felt really positive and happy to be on the trial only to be bumped off 6 weeks later. The 1st scan showed slight progression, CA125 stayed stable, having been increasing by hundreds in the weeks before. Do not mean to be discouraging, I would willingly try another PARP trial. Wondered if this has happened to others? Finding it difficult to find any statistics, early days still for PARP I guess.
Thanks Sharon for the info will go onto the force website,
Welcome to the site and thanks for posting the info. I managed to get genetic testing because my sister developed breast cancer and grandma (maternal) died in the 1920's of an unnamed condition after an abdominal op. conclusion probably cancer! If I turn out positive for BRCA1 or 2 my children & my sisters children will have the option to be tested. I had not realised that boys can carry it and pass it on to their daughters. So my 2 grandsons will need to be given the choice.
Given my previous contribution "Sharon" suits you so much better! see the Song of Solomon - ref the " Rose of Sharon" - so much more "you" !
Hi Sharon, have been thinking about this a lot recently. Thank you I've just completed the Macmillan questions and the result is above average, have an appt with doc tomorrow is that the right place to start or would u recommend another way ?
Yes, your doctor is a good place to start. You could print out your MacMillan results to take with you. Your doctor can refer you to a genetic counsellor who will give you advice and counselling before you decide whether to go ahead with testing.
Margaret,
Thank you for your reference to the Rose of Sharon - much more appropriate I would like to think!
Yes a lot of people (even doctors in the past) thought it had to come through your mother's side. You are correct - it can come through your mother or your father and be passed on to your sons or your daughters. My son and my two daughters have all been tested. A child born naturally of a parent with a BRCA mutation has a 50/50 chance of inheriting the genetic mutation. I say naturally because there is an option now for BRCA carriers to have a baby via PGD (Preimplantation genetic diagnosis), an IVF type treatment to have a baby free of the BRCA genetic mutation. My eldest daughter is going through this treatment at the moment and so could wipe out this high cancer risk in our family.
Nandi,
So sorry to hear that the rucaparib trial didn't work for you. I know on my BMN673 trial it has worked incrediby well for half the patients but not for the other half. I am also now on a trial within a trial to investigate further why it is working for me but not for others. As you say, it is all such early days with these parp inhibitor trials. My trial is still at stage 1 and obviously we are still finding out optimum dosage, side effects etc. I just feel I am incredibly lucky to be on my drug and hope they can widen it out to stage 2 soon to benefit more patients.
Whippit
Thanks for your comments. You are right that the contraceptive pill can help reduce your risk of ovarian cancer. Perhaps I should have stayed on the pill longer! If I had known my risk at the time I would have!
Barbara
Just checked on the Cancer Research UK website and a grandparent is classified as a 'close' relative. It says:"A close relative means a parent, brother or sister, grandparent, aunt or uncle, nephew or niece. "
Thanks Sharon for your feed back on the trial BMN673 that you are on. I went up to the Marsden to try for this trial, but all the cohorts in the foreseable future were full and they referred me to Oxford, which is much closer to home.Do you know if BMN673 is both a PARP1 and 2 inhibitor? I believe Velaparib is both, but cannot find any trials in UK. Rucaparib was just PARP 1. Loved the team at the Marsden. Hope you continue to have such success, its also very encouraging.
Yes back on gem/carbo. Blood counts have been a problem, so far had one combined dose, missed gem. on its own on day 8 and will have 2nd combined on Wed. Hope to know soon how well it is working.
Take care and long may you continue with such great results. xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How was your Ovarian cancer diagnosed? 
Fallopian Tube cancer
Could it be ovarian cancer? 
Pain below my armpits. I’m on Rucaparib. I’m worried the cancer could have spread to that area 
