Removing breasts and ovaries to reduce cancer risk?

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I wondered if anyone knows anything about this, if they have considered it or known anyone who has?

My Mother has ovarian cancer and we have breast cancer in our family also. She had a genetic consultation and the Dr advised her daughters had surgery to remove ovaries at menopause.

I haven't started reading up yet, and thought discussion with other women and hearing various opinions might be a place to start hence posting.

I've had breast cancer (age 46), my mother had breast cancer (age 58) and my sister had ovarian cancer (age 33, died age 40). I had a single mastectomy 2 years ago, and was offered a prophylactic removal of the other breast when I was having reconstructive surgery, although I didn’t do it as I’d had enough of surgery by that point. I did have my ovaries and Fallopian tubes removed as a preventative measure, on the advice of the gynaecologist. My daughters (early twenties at the moment) will be eligible for early screening and genetic testing, although they’re a long way off thinking about that yet.

I was advised to and didn't, and now have 2 different breast cancers. I have the BRCA2 mutation.

Is it a BRCA mutation that your mum has got? Have you been tested and confirmed to have the same mutation?

If so it would be a no brainier for me. I like my breasts and ovaries, but if I was done with them in terms of having children/ breastfeeding and they have a high chance of killing be then they can go. They are not worth dying for.

You need to check if they have the brca genes or not before you go ahead !
We have loads of breast cancer in my family but no genetic link , I have yearly mammograms and checks with a breast cancer doctor. !

When you get referred for genetic counselling they talk through some of the options for your to consider IF you also have the faulty gene. It's 50:50 for BRCA.

They also tell you to sort out your life insurance before you go ahead with testing too in case the law changes and they can ask you about genetically tested condition in the future.

Is it a BRCA mutation that your mum has got? Have you been tested and confirmed to have the same mutation?

No, and actually this is quite confusing to me. She does not have BRCA mutations. Yet the Dr still recommends we have preventative surgery?

I think my first step will be to get the genetic tests myself. Am I right in thinking I could still have the BRCA mutation myself given the cancers on my paternal side? Those women were not tested for BRCA so I don't know their status and no way to find out now.

Sorry to hear this but until your mother has had genetic testing and then her children are also tested I don't think very much will happen.
My DM had ovarian cancer and agreed to have genetic marker testing which came back positive. There are lots of different genetic markers and hers were BRIP1, which I believe is a recent discovery.
Once this was established her offspring and siblings were told they could request predictive testing as obviously it's a 50/50 chance of the gene being passed on.
DSis came back negative and I have tested positive for it. Therefore I can now request testing for my DC.
I have yet to have my consultation since getting the positive test but the initial appointment did go through what would happen. Although I believe treatment is different depending on which gene is faulty, I would be offered a partial hysterectomy (removal of ovaries) at 50 or after the menopause.
So there will be some preliminary test for you all first, it was only a blood test but the results did take over 3 months to come back and they will need the markers from your mother's test first.
Hope that helps and that your DM is doing ok.

Surely genetic counselling should be considered before major surgery. My mother has a cancer related gene so all of her children were given the option of testing and then recommendations discussed, we were not just all told to go have surgery.

I'm in my 30's and have not yet had children.

Not sure about having children myself although I would love to be a mum, for practical reasons including being terrified of having them and then dying young and leaving them.

I am really, really hoping and praying my mother's treatment will work but it's terrifying and she is only in her 50's.

The problem with Ovarian cancer is that there is no preemptive screening (well 5 years ago when I had my genetic testing there wasn't any proved effective despite lots of research trials going on).

TBH once you are post menopause they don't serve much purpose but I'd be surprised the NHS would find that unless you had the gentle risk?

For breast cancer they can offer increases screening, low doses of chemo drugs such methotrexate etc rather than mastectomy.

Just get tested to see if you have it , there are other mutations but this is the most common , also other types of cancer that aren't caused by thr mutation but I guess his point is removing these parts is a guarantee you won't get it but I think it's unlikely the nhs would do it unless there were a genetic link..
of course if you are paying they will no doubt do what you ask .

I would definitely get yourself tested before you make any decisions though.

My friend and her sister are currently having treatment for breast and ovarian cancer. Almost certainly genetic as their mum died young of breast cancer too.
Having lost my own Mum to breast cancer (not genetic) I would have the surgery if it was.

There is a book written by Michelle Heaton on her experience of this. Called something like “Motherhood, the menopause and me”. It is fairly honest and describes how hard a surgical menopause is plus her feelings about having her breasts removed.

Can you ask for a referral for genetic test and an appointment with a genetic counsellor? They will be able to go through your risks, what this means and go through your risks and options in detail. Sorry for the loss of your dsis and I hope your mum does well and gets better

That doctor's statement is weird and not very scientific. The right course of action is to test you for the 84 genes involved in increased rate of cancer and they are :

AIP

ALK

APC

ATM

AXIN2

BAP1

BARD1

BLM

BMPR1A

BRCA1

BRCA2

BRIP1

CASR

CDC73

CDH1

CDK4

CDKN1B

CDKN1C

CDKN2A

CEBPA

CHEK2

CTNNA1

DICER1

DIS3L2

EGFR

EPCAM

FH

FLCN

GATA2

GPC3

GREM1

HOXB13

HRAS

KIT

MAX

MEN1

MET

MITF

MLH1

MSH2

MSH3

MSH6

MUTYH

NBN

NF1

NF2

NTHL1

PALB2

PDGFRA

PHOX2B

PMS2

POLD1

POLE

POT1

PRKAR1A

PTCH1

PTEN

RAD50

RAD51C

RAD51D

RB1

RECQL4

RET

RUNX1

SDHA

SDHAF2

SDHB

SDHC

SDHD

SMAD4

SMARCA4

SMARCB1

SMARCE1

STK11

SUFU

TERC

TERT

TMEM127

TP53

TSC1

TSC2

VHL

WRN

WT1

Unless you have a mutation in one of these, nobody will give you extra screening , let alone prophylactic surgery.
Ask for a referral to a genetic counsellor and start the genetic testing if needed.
Diet and lifestyle are HUGE aggravating factors when it comes to cancer, even with a cancer predisposing gene mutation.

My great grandmother, grandmother, mother and two aunts (my mother's two sisters) have all had breast cancer. BUT, it's not the BRCA gene.

Her consultant has said that there is little doubt that it's genetic but that it's not an identified gene as yet.

All the women in my generation have yearly mammograms and the men have been advised to have checks too.

I've considered having a double mastectomy as a preventative, but just can't make up my mind.

I'm not in the UK so not NHS protocol.

My doctor has already offered me genetic testing independently of my mother's results, due to family background.

It’s the ATM gene that I have.

I don't think anywhere in the world a doctor would agree to organs removal without a genetic panel.
Good that you are being tested. Did he give any indication of which genes might be at fault? BRCA1 is most famous but other genes have also a very incidence of cancer.

It is important to make a correction here . There are now screening strategies for ovarian cancer offered to high risk women, not the general population. One is the ROCA combined with transvaginal ultrasound, quite accurate for ovarian cancer (you can read more about ROCA here www.ncbi.nlm.nih.gov/pmc/articles/PMC3982191/ ) and Breast MRI twice a year for breast cancer has become a the golden standard.

Tests are expensive and public health protocols have complicated algorithms involving cost /benefits to make them available to all, however oncologic geneticists are able to prescribe them. You need to be seen - and anyone with a family history - needs to be more aggressive in their demands and be followed by a specialised department . A GP has little power here. Also little knowledge on the emerging screenings.

I don't think anywhere in the world a doctor would agree to organs removal without a genetic panel.

I'm not sure this is the case, actually.

However, the genetic screening is something that would be a very important part of my own decision making process.

That ROCA study looks interesting. I've only quickly glanced at it and it seems focused on post menopausal women? I will be searching through literature on this at some stage soon but wondering if there is something similar for pre menopausal women too.

I have had transvaginal ultrasound before for problematic periods, and apparently had 'cysts' that were of no concern and also were not PCOS. Which is of course good.

I had read before that regular tv ultrasounds were dismissed as a screening tool for ovarian cancer, due to them not being accurate enough at distinguishing between benign and malignant lesions or cysts?

So now wondering in hindsight how my cysts were recognised immediately as benign? But obviously they were right as this was years ago and I didn't become ill!

I have a strong family history of early breast cancer (in 30s, fatal in 2 of my relatives) and I have been for yearly breast cancer screening since my late 30s on the advise of NHS genetic counselling.

No cancer gene has been identified in my family, but they have acknowledged that not all genes were tested for (only the main ones) and some cancer genes may not have been identified yet. I just wanted to point out that extra screening is available without a known family gene, when there is strong family history.

I had breast cancer (first in the family) and I tested negative for the BRAC gene.
On one hand I was bloody relieved, but on the other I probably wish that I had the opportunity to have my breasts and ovaries taken out.

I think, having had cancer, there is very little I wouldn’t do to prevent it coming back, and I think if this is an option for you, and you can face doing it, then do it.

Yes, it's my family history too that prompted the doctor to offer me a referral for a genetic consult.

understand completely where you’re coming from.
had single mastectomy 6 years ago. Other was healthy so they wouldn’t remove it (though I can, apparently, have reconstruction any time I say the word).
I’ve subsequently had 4 recalls after mammogram and 3 further biopsies, with the attendant 2 weeks of stress thereafter, each time.
First thing I’ll be doing when I can afford it is having the other breast removed. I know otherwise I’ll be worrying about it for the rest of my days.

NHS reasoning makes bugger all sense to me.

mum had cervical cancer and full hysterectomy 49 years ago. I’ll have that done, too, if I can ever manage it privately (after 3 hysteroscopies/polyp/ovarian cyst removals/punctures).