My Mum died of Overian Cancer and I have a fear that I’ll develop it too. As Ive had a hysterectomy light years ago I’ll not get any symptoms until it will be well on it’s way. So my plan is to ask the ONC if he’ll whip them out but am I ‘over reacting’? Will he treat me as a panicky old codger will have to wait on that one appointment mid April.
I’m waiting for an oophorectomy. My Mum died of cancer over 30 years ago and it wasn’t found until she had secondaries in her liver. It was thought her primary was probably ovarian, but I can’t prove it. When I mentioned it to the onc he was happy to refer me to the gyneacologist for ovary removal. The gynea told me that if your mother had ovarian cancer it increases your chances five fold, so he was happy to do it. The risk of the general population getting ovarian cancer is only 1%, so at 5% I’m still unlikely to get it, but why take that risk? It also will also save me from having to have four-weekly Zoladex injections.
I’m having mine because my bc is hormone related and is a recurrence this time - and its mutated from a grade 1 to a grade 3. My surgeon suggested it and it makes a lot of sense to me. Its about feeling that you’ve done everything you can to prevent it coming back and then moving on and getting my life back, for me.
My impression is that you can ask for it and be taken seriously
good luck Lazydaisy xxx
monica
Thanks so much girls - will definatly ask. StephanieX
Well ONC will not commit and has refered me back to GP openly admitted that it’s a funding problem - oh well yet another battle to win …and I will - so like a challenge.
Finally got to see a lovely geneticist councilor today who was so good at her job that I have full confidence in her. However she said that my mother died of cervical cancer 6 years after diagnosis ! No she died of ovarian cancer that spread to her bowel and pelvis and was dead within 6 months of being diagnosed!!! I still recall the conversation I had with her hospital doctor, so in their research I am sceptical although I never saw her death certificate.
I def. know that she was not diagnosed before and kept it quiet as her own G.P. was mystified as to how she managed to not contact him before. So the upshot is that because she is listed as dieing of ‘cervical’ I will not be considered for overy removal nor will I be tested for the hereditary gene… but as my daughter (42) has polycistic overies they may well recommend she has further investigation.
I can only be grateful to my G.P who was so understanding and really got the wheels moving even if the Onc wouldn’t. Funny thing is he will be on the team who will make the final decision!! funny old world aint it well at least he knows it’s not coming out of his budget…
You can obtain a copy of the death certifcate to be absolutely sure about the cause of death. It may even be worth requesting a copy of her medical notes though this may prove costly.
Best wishes x
lazydaisy all cancer illness are registered in the UK with a cancer registry in your area… the genetic team will have to apply to the registry to confirm the cancers… the type, site and age of the individual and also they will check the death certificate if relevant and through the medical records.
it is possible she had cervical cancer which has spread to the same organs as you describe including the ovary… but its maybe worthwhile getting back in touch with the genetics team and check how they obtained the information.
the reassuring thing if she didnt have an ovarian primary is that it means your risk of ovarian is back to population risk and its reassuring for other family members as they are also at population risk for both breast and ovarian cancer.
Lxx
Many thanks Lulu and Helen … see that why I use this forum there are times I really need people like you. Will let you know the outcome. Will ask for oopha thingamy but doubt if I’ll get it … anyone fancy abit of nipping and stitching, it’s got to be very simple!!! Stephxx
lazydaisy I had my ovaries and tubes out on Tuesday. I had been advised that it might be part of my treatment prior to chemotherapy.
When I saw my consultant I asked about it as I’ve ovarian cysts, endometriosis er and pr +++ and my Auntie and cousin dyed of ovarian cancer. He told me he wasn’t allowed to tell me to do it but would suggest that it was sensible to do (clearly encouraging me to go this way as he kept reminding me I had vascular invasion and the reduced chemo I had wouldn’t have been enough)and referred me to gyni who said definately the thing to do. Ovarian cancer and er+ cancer can be related. I was in 10 days after final gyni visit.
Have had it done and breast care nurse came to see me and said that in view of er/pr+ and my dx I’d definately done the right thing… didn’t ask for an explanation!
The op was ok and whilst I had horrible windy shoulders and ribs I don’t feel too bad at all tonight - lets see when the oestrogen reduces what I think then!
take care
Katie
Thanks everyone for your sound advice and experiences - Im also er and pr+++ too so will mention it but running out of energy .
Monica and Katie - I had not heard of ovarian cancer being related to hormone receptive bc. If this is so, why do they not discuss it? No-one mentioned it to me. Am I at greater risk, then?
Ann x
Hi Ann
there are a number of ways that ovaries are ‘shut off’ temporarily or permanently and its not that uncommon as far as I understand it. Many women go through the menopause during chemo and I was amazed that altho my periods stopped I was still having cyclical breast changes (these have always been very obvious for me).
I guess its a matter of different ideas about treatment from different consultants - my surgeon suggested it as soon as the path report came back after WLE, based on my history, in the event that chemo didn’t induce the menopause. I was 50 when dx, so we did expect it to. The gynae agreed fully and I was in hosp fairly quickly and sorted.
I have no family history of either bc or ovarian cancer - decision was all based on my history. It made sense to me and I wanted to go all out to reduce the chances of another recurrence.
I don’t know all the techie reasons why some go for it and some don’t - they can’t be clear cut or everyne would have the same approach. I hope this is some help
monica x
Hello Anne
I only know that certain aggressive types of hormone positive cancers are supposed to be linked, they must get an idea from your pathology and family history. I understand that if you carry the BRCA gene and get BC there is more chance of you having both cancers than someone without, although it doesn’t necessarily mean you’re going to get both (up to 60% chance of ovarian cancer where general population risk is about 1.5%). The BRCA gene is also related to prostate cancer apparently… at least I can’t get that one!
Your consultant and oncologist will be able to advise and I’m sure your BCN will be able to help with any worries you have too.
Take care
Katie x x
your risk of ovarian ca isnt linked to ER pos or negative cancers… but can be an indication of gene mutation or increased risk or either breast or ovarian ca or both.
if you have both ovarian and breast cancer in the same side of your family then its wise to ask for a referal to genetics and they will be able to make an assessment based on your personal family history and can refer you for further surgery if deemed appropriate.
katie you would be able to have genetic testing for the brca gene based on your family history… this may be something you would like to discuss with a genetics counsellor. other members of you family would be eligible for enhanced screening from age 40
here is the english guidance on screening for breast/ovarian ca and gene testing.
your ovaries do produce hormones oestrogen and progesterone which can be linked to breast cancer so some people have their ovaries removed to reduce their risk of BC if at high risk of recurrence.
Lulu x
Thanks Lulu for explaining that better and the links.
my Consultant has talked to me about genetic testing and the main reason I had my ovaries removed was the 8/8 er and pr of the tumour. That and the fact that I appear to be having allergic reactions to tamox.
Katie x
I was ER+ 8/8 and PR+ 7/8 but I was assumed to be post-menopausal at 55, although I had been on continuous HRT and didn’t have periods. Maybe that is why it wasn’t mentioned. My Mum did have bc and although it had spread to her bones, as far as I know she didn’t have ovarian cancer. She was 76 when diagnosed and so they didn’t think that I was at any greater risk at the time. I have no idea about the BRCA gene in our family.
Presumably, removal of ovaries is suggested for those who are pre-menopausal, as they are still producing oestrogen.
Thanks for your thoughts, ladies.
Ann x
I’ve recently been informed by my consultant that research data informs that there is little benefit to having my ovaries removed as opposed to taking Tamoxifen for 5 years.
I am diagnosed ER and PR positive and have had chemo. Trying to research ovary ablation (oophorecotomy), but finding it difficult. Want to find out what the add-on benefits of having your ovaries removed and taking Tamoxifen for 5yrs. Also interested to know the side effects of being thrown straight into permanent menopause? Are the permanent menopause side effects similar to those brought on by surgical menopause from chemo?
Has anyone opted to follow this pathway? Would like to hear from you.
Thanks,MJM
ann people with a family history of ovarian ca or who appear to have a high risk of genetic type of breast ca are more likely to be offered ovary removal.
for women who are known to have a genetic mutation it is always offered.
for individuals who are post menopausal its unlikely to be offered unless you fit one of the above categories regardless of how much oestrogen and progesteron receptor positive you are.
some pre menopausal ladies will be offered if there is a higher chance of recurrence… eg higher grade or larger tumour or positive nodes or LVI… but even premeno lady with small grade 1 or 2 with no nodes wouldnt benefit from having a BSO.
MJM the problems with being thrown into an immediate menopause can mean much more immediate and intense symptoms… loss of libido, vaginal dryness, more severe flushing, joint and bone pain… there is also the increased risk of osteoporosis and cardiovascular disease.
im a brca 2 carrier and getting my ovaries and tubes out some time within the next 9 weeks.
Lulu
Again, diiferent onc advise different things.
I was 34 at dx with no family history, small tumour, no vasc inv, no lymphs involved, grade 3, 100% er and pr+, and was told straight away i would need tamoxifen and zoladex, or i could have ovaries removed instead of zoladex (which 15 months later i did).
I have had no added problems from surgical menopause a year ago, just the few mild flushes i had anyway. I have bone density scans and am on calcium tabs.