I am healthy but

Hi,
I am new to this forum and really still in shock. I have the BRCA1 gene from my father and suddenly I am being told that I have to get my ovaries removed before I am 40 (I am 39 in December) and must contemplate surgery to remove both breasts - all of which to prevent something I might never get. Does anyone have a similiar experience? What happens after ovary removal and how the heck do you decide about a mastectomy when you have never had experience of cancer or even known anyone - my father’s family was never close to us so this has all come as quite a shock.
On top of all this, I am mother to 13 month-old twin boys and really just getting through the day with very little chance to even contemplate what has happened. The counselling has been really non-existent so far so I am really bewildered by the future and finding it very hard to cope.

Hi Bridget,
I am in the process of awaiting my results of the genetic test and am expecting it to be positive- this would be from my fathers side. I have cancer and have just had mastectomy and have requested that they take the other side also which the surgeon will do next year. If I DO carry the gene then I would also have no problems with getting my ovaries removed as I understand there is a significant risk. As I already have cancer (was 34 at diagnosis) it is an easy decision for me to make as NEVER want to go through this again and will do all I can in my power to try and prevent that, but I can appreciate where you are coming from, especially with coping with your baby twins as well.
If you are concerned about the cosmetic appearance of a mastectomy, I can assure you, I am over the moon with what my surgeon has done for me as he implanted at the same time. I have small scar runninhg from under my arm dowm my side and I can honestly say that if I was on a beach topless you would never guess and looking at me straight on you would not know which one had been done.
It is not an easy decision and if you feel that you have not had adequate counselling then maybe you should approach your GP and ask for some additional counselling so that you are sure that you can make your own decision
Take care
Katyx

Dear Bridget

I am sorry to read that you are feeling this way at the moment and would just like to let you know about our freephone confidential helpline. It is run by specially trained nurses who are able to offer advice about services inside and outside Breast Cancer Care and can help you make informed choices about what you should do.

The number to call is 0808 800 6000 Monday to Friday 9am-5pm and Saturday 9am-2pm.

You may also find our factsheet called ‘Familial breast cancer’ helpful to read which you can do so via the following link:

breastcancercare.org.uk/docs/familial_breast_
cancer_updated_may_06_0.pdf

Best wishes

Louise
Moderator
Breast Cancer Care

Hi Bridget, I found I had the BRCA2 gene a few months ago and had my ovaries removed in Jan this year. I will have the mastectomys too soon. I found it a great shock to find out about the gene even though I had long suspected it given the history of bc in my family. For the oophrectomy, it was perhaps easier as I am in my late 40s and would have started the menopause anyway soonish, and I had completed my family etc.
Have you seen the genetics nurse? or enquired about counselling perhaps from your GP. There is a lot of information and support that I found on the web, and the breast nurse and genetics nurse were very informative. Do contact me if I can help at all.

Hi Bridget, I am a Bridget too! - do you have an Irish background?!

I am BRCA2 and had my ovaries removed a year after mastectomy, chemo and radio. - It does obviously send you into an early and sudden menopause. It must be an awful shock, you should be able to access some support to help work through this. The genetics clinic where I was tested had a nurse, who was available to chat about things, and gave me her email address. Try your GP otherwise. What does your husband/partner think about it all? he must be in shock too. Do you have siblings? were they tested too?

B

Hello, and thank you for your replies - with the boys I very rarely get the laptop out but today starts a regular Monday morning off as the boys are now going to a childminder - apoligies to those of you who replied ages ago. I just wanted to say to Katy - I am so sorry that at such a young age, that you already have cancer ( I suppose that I am lucky that I may be forewarned about this terrible thing)- it’s good to know that you are happy with the reconstruction - I must say that it doesn’t bother me too much (yet) - my husband is more upset about the mastectomy. I just can’t really take it in at the moment - maybe a bit in denial because there is nothing wrong with me.

I feel a little bit abandoned - the genetics nurse we saw who gave us the results just handed me the paper and walked away to make us a cup of tea - she said she would see me in 4 weeks but that hasn’t happened - just a letter confirming everything - giving you that news and then leaving you to somehow take it in - it’s not easy and I just don’t know where to start.

Thanks to Louise for this info line - I can’t phone it yet, because I just keep bursting into tears - will try to call when I feel I can at least, speak. JULRO - can you tell me after removal of ovaries etc - did you start HRT and how did it effect you on an everyday level? I think I will go and see my GP just to ask for a general counsellor - the other day at Toddlers both boys were crying at once and I just blurted it out - really didn’t want to tell anyone here in such a small village - don’t want to be known as the girl with…

Bridget - this is my second name - my first name is Grainne and yes, I am half-Irish - grew up there and my dad’s family who are Irish are the ones with this gene. I only have brothers and none of them have been tested because they don’t seem too bothered - only one of them has a child and he is a boy. How long does it take to recover from ovary removal - is it keyhole? I had a c-section and then appendectomy a year ago - can’t bear the thought of more abdominal surgery.
How do you decide whether or not to go for mastectomy? Sorry, you can tell I’m green about all of this. I appreciate any input at all.
X

I had the oophrectomy via keyhole surgery and was in hospital for a couple of nights post surgery, and off work for 3 weeks. I felt a bit weak and wobbly, but fine fairly soon, though my wounds became infected, but antibiotics sorted that out.
I was referred to a gynae specialising in menopause who put me on HRT, as I was getting hot flushes, and sleeplessness with a vengeance. This sorted those problems out.
I met a woman who had the mastectomies (via the breast nurse) and it was really helpful to talk to her,and hear her experiences.
Take your time, I did lots of research and talking to people on line before I reached my decision, and mine was based in part on not wanting my children to face the uncertainties if I had bc.

Thanks - this is really good advice. I have a sort of inertia at the moment because it saves me having to face the reality of it all. My friend is coming to stay next week and I’m hoping she will spur me into action.

Don’t rush into anything, allow yourself time to make the best decision for you. As Julro said I was in hosp for 2 nights too, came out feeling pregnant, as they inflate your abdo with gas when doing keyhole surgery, to see what they are doing! I didn’t take HRT as my cancer was oestrogen positive, and I had them removed partly to stop production, and due to risk of ovarian cancer genetically.

I have met a number of women who are half Irish who have had Breast cancer, and have the gene. It would be interesting to know if there is a higher incidence there, or perhaps these people stick out in my mind!

Hope you find a good counsellor, it will prob really help, you don’t sound as if you have much time to think at present. Will it be easier in Sept when a routine begins again?

Hello. I have read your comments a few days ago and couldnt quite put into words how to make any one feel better.Ive gone through all the genetics stuff and am waiting to see the genetic counsellor again soon.My consultant has offered me a double mastectomy and ovary removal.I decided on the mastectomy but not the ovary thing.I lost a baby 2 months ago at 10 weeks and am now having problems “down there” and am now terrified my ovaries are playing up but am even more terrified to go see my GP.The baby was an unexpected surprise as i have polycysistic ovaries anyway (i have other children) .Please if anyone can give me some advice I would be really pleased.Im welling up now so better go
PS whats this Irish Stuff? Im part Irish.My genitics perp told me dodgey gene came from my Irish side of the family??
Sharon X

Sharon,

I know exactly how you feel. I am dealing with the ovaries first just ‘cause it’s simpler and reduces the risk of breast cancer. Then I will think about the double mastectomy - I wish someone could tell me how soon I should do it. I’'m sorry about your baby. Do you know a friend who could phone and make an appointment with a gynae and then go with you?
I am also terrified that something is already there - I think it is natural. It’s a coincidence that one of the other girls who answered this thread also has Irish background like me.( then again maybe the Irish thing is important) This gene has come to me from my father and his family who are Irish - some professor did a study on his family and that’s how he found out and then told me I had a 50% chance of having it too!
Chin up Sharon - Have you had any cancer? How did you know to have a gene test? Are you in the same boat as me?

GrainneX

I have a friend staying and this has spurred me into action - I want to be around for my boys.

Hi. My mum had bc at 32 she had 5 cancers in 23 years and died at 55.Her final wish was that i should be tested, the rest is history.My chances are between 50 and 80%.I am 39 and have been on a programme for the last 8 years.My consultant seems to think that i should make my decision before im 40! Ive just had a MRI and am awaiting the results.The kids like you, come first. My mum wasnt around when i needed her and am determined my kids will have me (whether they want me or not)

What is your story?
The best thing is to talk,Im glad you have been spurred!
Sharon X

Hi Sharon,

I had an eventful time recently. After years of trying for a baby and finding nothing wrong, I underwent IVF. It worked first time and I got pregnant with my wonderful twin boys who are now almost 15 months. When they 7 weeks old (they were born by c-section) I had appendicitis! This made my chronic back problems really bad - after all of this, my Dad told me the outcome of his gene testing (which came about 'cause some professor was stuyding his mother’s family) - he is
BRCA1 positive but because I have 3 brothers, none of them are that bothered about being tested. I had a 50% chance of having it and the rest is history.

To be honest with you, I am not dealing with it very well. I am scared that I get this awful Ovarian cancer before I get a chance to have my ovaries removed - every twinge terrifies me. My genetic nurse is really and adviser I would say rather than a counsellor and I am finding it hard to cope. I am letting it take over my whole life and it is affecting everything - no one seems to be able to say anything that makes me feel any better. I feel bad about this 'cause I don’t have any illness but the knowing about the gene is killing me - just wish I knew more and could get on with my life!

Hope you are OK,
Grainne XX

Hello Irish Cousins!

I am from Belfast, we have a lot of BC here, and no Irish BC forum!..I’m awaiting a referral to genetics as i was diagnosed Oct 2006, and my mum at 66, in may this year, both her 2 pos!..My mum in law died of BC 5 yrs ago, my dad died of prostate cancer…i have 2 daughters and a son, under 13…so i know I’m not looking forward to the results!..

are there any others from NI on here?

Jill

Hi JillI

I’m from Belfast too. Was dx March 2006 with grade 3 aggressive triple neg bc - underwent surgery, chemo and radio and had my genetic testing done 3 weeks ago. Genetic nurse convinced, due to my family history, test will come back positive - but have to wait for a year for the results. I have also just been to onc who sent me for spinal xrays and as she wasn’t too happy with them has referred me of an emergency MRI.

I have got to the stage were I am so b****y fed up with this - when does it ever end? I will have whatever surgery they advise as have no wish to go through treatment again.

Ah well, another year of waiting.

To Bridget 68
You poor thing! I to was where you are now. You have to keep your head up and looking forward for your kids.My youngest is 22 months and i find it hard.My 7 year old has been diagnosed with a kidney defect that they say is genetic! So i feel i have let him down which is stupid really.I go see a genetic perp again next month (i dont really know why) to have a chat i suppose.Keep focused and dont let this beat you we are here to help each other.Get back for a chat…

Sharon x

Thanks Sharon, it is hard for other people to comprehend my feelings at the moment - even my husband gets narky and tells me I don’t actually have cancer. I went to see my GP the other day and he gets it. He says uncertainty is what really frightens people and living your life in fear can be very damaging. He took some bloods just to test and put my mind at eas until I see the gynae in October.
What stage are you at now?

GrainneX

Hello!
I go see my genetic perp on Thursday then i dont know what happens next.The ovary thing frightens me now, after all you cant check for lumps can you?What i will say to you is that we are the lucky ones because knowledge is power,we know what can happen to us but there are poor buggers who are carrying on with life not knowing weather they are affected, so stay focused and good luck xx
Sharon

Thanks Sharon - good luck tomorrow!
GrainneX

Hi everyone,

I’m so glad I’ve found this website (my breast cancer nurse did give it to me but didn’t think I’d need to use it). Bridget, you’re not the only one who feels like they’re going mad, I feel a lot like you do. I got my positive result in August (my dad died from breast cancer 2 years ago), and I thought I was coping okay with the news but really my head just feels like it’s going to explode sometimes. I’ve just had a second doctor ask me if I’ve considered having my ovaries removed (I’m only 34!) which has really frightened me because I haven’t really been given any information about ovarian cancer. I know I’m thinking about it too much but that’s because I’ve already got my appointments for my first MRI and mammogram in 2 weeks time, and I’m nervous about it all. Like you, I haven’t got any symptoms of cancer, so half the time I feel a complete fraud for being so scared.

I suppose I’m most worried about the risk of ovarian cancer, as I’ve had unexplained back pain and constant bloatedness for a couple of years now, but I’m probably just worrying for nothing. They are going to put me forwards for scanning, so I guess I’ll get more answers then.

Feel better now, I might actually sleep tonight.

Alison