Advice needed please ladies re ovary removal x

I am currently taking tamoxifen as a “hormone receptor” i don’t have bc, i have a continual cyst in my boob, which changes with my cycle! they have given me tamoxifen as there is a family history, aunty died before 40, cousin in her 40’s, my mum had lump removed in her 40’s and another aunty died recently from secondary bc at 62.
I have been goven the option of having my ovaries removed?? just wondered if anyone else had been in theis situation or what would you do? i’m 42 and have 3 children so won’t be wanting anymore!!!

Not sure agoing the gene testing either???

Many thanks xx

Hi Cathy

Could I suggest you give our helpline here a ring, they’re just a free phone call away, 0808 800 6000, lines are open now and until 5pm today (Mon-Fri) and Saturdays 10-2.

Take care,

Jo, Facilitator

Cathy,
ive just at come home from hospital following removal of my ovaries and Fallopian tubes yesterday! I had breast cancer last year aged 41 (it was aggressive, large tumour, had chemo, wle and radio) and found out I had the brca1 gene a couple of months ago.
It seems the reasons behind people’s motivation to have risk reducing surgery screw preventative screening, is a very personal one.
The biggest motivations behind my decision to have this BSO (bilateral salpingo oopherectomy) done was a) screening for ovarian cancer is not terribly successful b) symptoms of ovarian cancer only manifest when cancer has been there for some time, c) prognosis for ovarian cancer isn’t good and d) doctors don’t quite know how the science work, but studies have shown that having a BSO can reduce breast cancer risk by upto 50%. As a brca 1 carrier, My oncologist and gynae were fairly keen I had this surgery done sooner rather than later.
I’ve also got 3 children and don’t want any more, so that made the decision even easier.
its early days post surgery (less than 24 hours) but its really not that bad - feel a bit like I’ve been punched in the tummy a few times by mike Tyson and suffered more from the general anaesthetic tbh. obviously we need to see how the next few days go and need to see wat menopausal symptoms arise - but following chemo treatment last year and taking tamoxifen has meant I was already suffering from ‘chemo pause’ symptoms anyway - so fingers xd it’ll not b much worse.
let me know if I can help in any other way x. Good luck

Thank you Vic for your reply. sorry to hear you’ve had to go through chemo etc, i feel very lucky when i read everyone elses journies on here :frowning:
The confusing thing i find is that everytime i have an aot at the breast care clinic i often see a diff consultant who all have diferent ideas!
AS for the menopausal symptons have had a few takeing the tamoxifen and i really don’t like taking tablets at the best of times (not that i canttake them) just don’t like the thought of long term usage, consultant said i could stay on them for 10 years !
I’ve not had the genetic testing done as not sure really how it works as from what i’ve read you need a survivor to take a blood sample from??? I was offered the test when i was 18 by my gp but at the time really didn’t want to know!
i always thought yep i’d get rid of any bit of me that would cause problems but when faced with the decision its not so easy :frowning:
it seems like the best option really, just need to make my mind up and talk to my consultant - which ever one it may be!!!
Thanks again Vic

And Jo BCC i will give them a ring when i can x

Thank you Vic for your reply. sorry to hear you’ve had to go through chemo etc, i feel very lucky when i read everyone elses journies on here :frowning:
The confusing thing i find is that everytime i have an aot at the breast care clinic i often see a diff consultant who all have diferent ideas!
AS for the menopausal symptons have had a few takeing the tamoxifen and i really don’t like taking tablets at the best of times (not that i canttake them) just don’t like the thought of long term usage, consultant said i could stay on them for 10 years !
I’ve not had the genetic testing done as not sure really how it works as from what i’ve read you need a survivor to take a blood sample from??? I was offered the test when i was 18 by my gp but at the time really didn’t want to know!
i always thought yep i’d get rid of any bit of me that would cause problems but when faced with the decision its not so easy :frowning:
it seems like the best option really, just need to make my mind up and talk to my consultant - which ever one it may be!!!
Thanks again Vic

And Jo BCC i will give them a ring when i can x

Hi Cathy

your right about having to be affected by breast or ovarian cancer to be tested… it would need to be one of your affected relatives who would need to be tested… If a fault was found they could then check you for the same fault. If any of your affected relatives are still alive or gave a blood sample prior to their death its possible they could be tested.

Also the gp who offered to test you at 18 probably wouldnt have been able to do so in reality as its a spcialist test that only genetic centres can authorise and they will only process samples from affected individuals after full genetic counselling of the risks… So dont worry about not getting it done then.

i think that choosing to have surgery when your fit and well is a hard choice… Im a brca 2 carrier and had bc 3 tumes at 37, 40 and 43. And had my ovaries and uterus removed age 42 after finding out i had brca 2.

i had hormone pos cancer at 37 and hormone neg at 40 and 43… I was on tamox for the hormone pos one and have now changed from tamox onto letrozole earlier this year for the next 5 years.

I was also in the chemopause before being plunged into the surgical menopause almost 3 years ago and my main symptom is hot flushes and the odd bit of vaginal irritation. The tamoxifen can also cause hot flushes too. The letrozole im ow on causes join pain but not as abd as when i was on chemo.

iv not had mastectomy (yet) and have thought about it frequently and even been on the waiting list then took myself off again… But think im really considering it (again) next year… I go around in circles and thats after having breast cancer so i can really understand your own concerns… The option to have my ovaries out was made based on the fact a cousin died at 45 from ovarian cancer so felt time was not on my side in that respect… I also had been through bc twice and come out the other side and felt I could deal with BC better than OC as that tends to have a much poorer prognosis and is often asymptomatic until its more advanced… And also having my ovaries out reduced the risk of BC although did get my third BC after my ovaries were removed.

anyway maybe you could request a referral to genetics and discuss it all with them.

best of luck with your decision

Lulu xxx