My breasts or my life.

My breasts or my life.

My breasts or my life. My breasts or my life was shown last night on ITV1 and was yet another programme giving incorrect and misleading facts about BRCA1.I spent numerous years doing research, before having test and found to carry BRCA1 gene and this at least made me knowledgable enough to know what was portrayed last night was incorrect advice, but those with little or no knowledge will again be mislead and such a programme does little to inform the general public of the true relevant facts i.e just because you are a BRCA1 carrier does not mean you WILL get cancer, and the 80 - 90 % risk is not immediate as made to beleive it gradually increases with age, little was mentioned about ovarian cancer ( known as the silent killer).
etc etc. such incorrect information does more harm than good and you have to ask why did the individual go on tv about such ? in my eyes it was for personal gain and not to benefit the public which is the important factor here. Many women in their 20’s, 30’s, 40’s, and 50’s are making life changing decisions because of BRCA1 and having not only masectomy but oopherectomy which can leave individuals childless and suddenly plunged into menopause over 20’s years early and all these individuals have helped others through sites like this and making people aware of the true facts of BRCA1. Along with the genetic team and doctors it has been these individuals who have personally experienced such life changing challenges and are willing to share their knowledge and experiences to reasure other individuals who face lifes challenges who truly are a inspiration.



I have to agree with you on this one! I am also BRAC1 and was diagnosed in 1997. At that time there was not much infomation available regarding preventative surgery. I was advised to have my ovaries removed as soon as possible because as you say ovarian cancer is a silent killer. I had this surgery in 1998 and am now getting ready to have a propolactic bilateral mastactomy ( in the next 4 weeks).
I found that I coud relate to the initial stages of this documentary (testing etc) but the choices available were not discussed in any depth. The programme did not mention the screening programmes that are available or the support groups who continue to help women who find themselves in this situation. It seemed to me that having BRAC1 was portrayed as having a death sentance - its not!!
I beleive that we are the lucky ones, we know we have a high risk of developing cancer, most women are not as fortunate and do not have the choice to reduce their risk.
I would like to talk to someone who has had this surgery recently just to see how it went and to get some reasurance.


Hi Minime Thank you for your reply, glad I was not alone feeling that it portrayed incorrect advice and missed crucial information ie available screening, that the percentage given is a lifetime risk not immediate and the risk at her age is small and increases with age. I have only had oopherectomy ( Sept 05) aged 34yrs old and decided at present not to have masectomy as pleased with the breast screening I recieve, started MRI screening January this year and feel the medical care I recieve and doing a personal check reasures me enough for now, but know maybe one day it will be something I need to face. With regards to propolatic bilateral you are in the right place, Suefab is the one who will be of great help along with many ladies on this site who can answer you questions and give you reasurance and I am sure they will be there for you very shortly and throughout your surgery and long after while you recover. I wish you all the best and will be thinking of you. Please keep us updated.


Minime2 If you look back on page 2 and look at topics I-d reconstruction due for brca1 gene , & topic for Joanneph , they talk about masectomy. Maybe you could type questions you have for suefab, joolez, Joanneph or others and they will hopefully be able to answer and share their experience. It really does help knowing others are there for you and have already been through that experience.


My breasts or my life Hi Courtney & Maria,

Unfortunately I missed the programme last night - got stuck into some unpacking in the new house and it was after midnight before I knew it! It doesn’t sound as though they’ve given the right information about BRCA1 and 2 and your points are all valid Courtney - especially about the risk being over your lifetime, and of course all the support available.

Seeing this talked about makes me wish even more that I’d known more about genetic testing earlier. I always knew I had a strong family history of cancer, but didn’t look into it enough before my own diagnosis, treatment & surgery. If I could turn back time, I’d have the test done without a second thought, and all of the preventative surgery I could have. Maria - you’re right in saying we’re almost “lucky” as we can have the preventative surgery, unlike most women.

Maria - I had a mastectomy 18 months ago when I was diagnosed, then had chemo & radiotherapy and delayed reconstruction. As I found out I was BRCA1, I asked to have my healthy breast removed & reconstructed at the same time - so had a single mastectomy but bilat reconstruction in one go. I had the operation in November last year and am so pleased I did it. Not only am I very happy with the results, but I find I spend a lot less time worrying about recurrence - especially after having my ovaries removed in March too.

The op was a long one - I was in theatre for 8 hours - but I was only in hospital for a week and was up and walking about the day after surgery. I’ve had full movement of both arms since the op, and very little pain or discomfort in my back, despite getting an infection. I’m going back into hospital for another couple of nights later in the month to have the scarring fixed up on my back (where the infection was) and to have nipples reconstructed too. Not looking forward to more time in hospital, but I know my plastic surgeon will do a fantastic job.

Do let me know if you have any more questions about the op - very happy to help.


Choices ? So what are the other options then ? I feel like I don’t have a choice. The only other options I have been told about are a yearly mammogram and check (which is only 68% chave of finding anything) I am a 32 year old woman with a potential BRAc2 mutation and have been told that if I have a positive result I will have 85% lifetime chance. The way that I feel is that I would rather go through the surgery now than have to go through worse if I get breast cancer. Obviously everyone makes different choices which are personal to them, I am not sure what further information there is for me to gain ? Can anyone help ?


I just want to add another perspective to this discussion as someone relatively young who has just discovered they have the BRCA1 fault.

Yes, I found it disappointing that there was no mention of the risk of ovarian cancer, little about other options available as oppose to surgery, misleading re lifetime risk and low on general information for the public.

However, the programme wasn’t supposed to be a documentary all about BRCA1/2 but more a personal programme about Becky. As such, of course it was going to focus on her personal journey and I think it was very brave of her to put herself in the public eye like that. The programme was lacking if its intention was a fully informative documentary, but that wasn’t its purpose. If all it does is help a few people to realise (it helped me) that there can be a positive and empowering outcome if you have the genetic fault and capture the attention of young (and all ages) people in this situation (I have a 20 year old sister who is digging her head in the sand at the moment), then it will have acheived its purpose.

I should say that personally found it very useful though because her healthcare providers will be the same as mine (I am being referred to the same genetics clinic and surgical team) and I am considering a skin and nipple sparing mastectomy/recon.

Lisa, like you, I feel I have no other choice - but it is a personal decision and can completely understand why screening is an option for some and not for others. Regarding ovaries, I’ve recently read something interesting on the Mayo Clinic (US) website that if you are pre menopausal, you could have your fallopian tubes tied or something and that would quite significantly reduce your risk (although not as much as having ovaries removed). It’s only a temporary thing and I’m not sure how valid their research is, but it might be worth checking out for those that want to avoid menopause for a few more years, but have already had any children they want…

Options. Hi Lisa1974,

If your mother or father carries a faulty gene s/he will also have a normal copy. This means that you have a 50:50 chance of inheriting the faulty copy and a 50:50 chance of inheriting the normal copy.
If you inherit the faulty copy you have a 50:50 chance of passing it on to your children. If you don’t inherit the faulty gene you cannot pass it on to your children. If you do have a faulty gene you are at a greater risk of developing breast cancer (assessed up to age 85) Carrying a faulty BRCA1 or BRCA2 gene gives you an increased risk of developing ovarian cancer. There may also be a slightly increased risk of developing other cancers if you have a faulty BRCA2 gene. Having a faulty gene does not mean you will definetly develope breast or ovarian cancer. If you are found to be a BRCA1 or BRCA2 carrier the percentage given is a lifetime risk, this means that they are talking about it being lower the younger you are with a gradual increase up to 85% up to the age of 85 yrs old .


1.Diet and lifestyle play a major role, there are many different and varied diets people believe help to personally lower their risk i.e some cut out dairy products or go vegetarian etc. Also doing regular excercise helps.
2.Being aware what your breasts look and feel like different times of the month and doing a personal check once a month.
3.Mammograms, attending yearly screening and checks by breast screening team.
4. Getting involved in research, this vastly improves your knowledge and awareness of breast and ovarian cancer.
5.Ultrascans, another method to look for breast and ovarian cancer.
6.MRI screening is sometimes offered as a method of breast screening and picks up any tiny lumps.
7.Ovarian screening, your could ask if the hospital is willing to offer this. It can be done either two ways, externally using a ultrascan or internally using a probe, it is a very straight forward procedure and can be done easily and is a yearly check for ovarian cancer.
If they are in doubt about any lumps they will do biopsy.
8. Masectomy, removal of breast (s) via surgery will lower the risk.
9. Oopherectomy ( removal of ovaries and fallopian tubes) again this reduces the risk of ovarian and breast cancer. If you have a oopherectomy you will go into the menopause.
10. Both masectomy (removal of both breasts) and oopherectomy (removal of ovaries) This greatly reduces the risk, this is not 100% but reduces it so that you have only a very minute chance of possibly getting cancer.

(please note: I am not medically qualified and you should always seek professional advice before making any decisions).

you do not say if you have been refered to a genetic team via your GP and wether you have had BRCA test and await the results . You should ask your GP to refer you to a genetic team who will be able to advice you of what facilities for screening are available within your area.

Any further questions please ask and one of us will gladly do our best to advice you.


Whatever the reason… Whatever the reason was for that young lady to make that programme i.e personal gain and attention or if she felt it would benefit others, one thing remains. It is of no use to anyone if the information is incorrect or misleading ( wether documentry or just a story of her life). Doing such without making the general public see it from different prospectives and giving all the options available could cause people with little knowledge or who are affected by these issues / do not want to face up to reality or just feel scared and isolated to make a incorrect decision. This could affect not just their lifes, but the lifes of people around them. It is vital that the public are given truthful and informative information about what really is available (there is a very large amount of information available these days) and not mislead or made to feel otherwise. One thing we do NOT want is to create a situation where another generation misunderstands and so on through future generations. It is vital we give future generations correct advice to ensure the future wellbeing of women who face BRCA1 and BRCA2.


Lisa1974 Lisa1974,

You stated on one of your postings you do not know the inherited risk, it is only a very small amount of breast cancer (5-10%) is due to inherited factors. For most people, increasing age is the greatest risk factor.

If you go into your profile
click on more information on family history
you will find breast cancer care have posted information regarding family history.

With regards to the programme, it is felt by some of us that not all the information available was given and that it was misleading ( we are not saying it was totally incorrect) and that we personally feel that it could of been put accross better.

At the end of the day you have to do what you feel is right for you, and do what ever it takes to put your mind at rest.

People on this site mearly give their experiences and opinions and you must always remember that everyones experience and feelings differ greatly and we all deal with it differently.


t.v programme Hi,
I did find that some of the content of the tv programme “My breasts or my life” was sensationalist (the very title!) and not totally factually correct… However I feel that Becky was brave to make this programme and that it was valuable for the following reasons:
Educating Joe public that breast cancer can be genetic
Educating Joe public that sometimes women have preventative mastectomies with reconstruction because they are at high risk of breast cancer.
These two fundamental points I don’t feel that Joe public understands at the moment. I am judging this on responses from some of my friends and acquaintances.( Some friends have said I should just wait to get breast cancer and then have my breasts removed !) Also even some medical people on hearing my plans for a double preventative mastectomy have said they have never heard of such a thing.
This programme will raise general awareness of the issues. I felt I had to be careful about who I told about my operation as they would not understand. (Although friends and family I have told have been positive)

The programme did have faults.
As an educational tool for women with or potentially with faulty genes that predispose to breast cancer it wouldn’t be that good. I am glad I watched after my first operation as I think I may have been more frightened and worried about the surgery and upset by some of the voice over comments. I think it may have been good to follow Becky a few weeks after surgery-maybe showing her back to her confident self and looking attractive. This could have allayed some womens fears better than anything.


I am awaiting an appointment with my surgeon to discuss my options should my genetic test be positive. (Maybe the wrong way round but the way I have decided to go for now) My mother tested positive for BRAC2 fault, and I realise what that means. I have seen a genetic counsellor, professor and consultant, plus Phsyco oncologist, several times in the last 8 years and now I am in my 30’s feel it is time for me to make some decisions. I may be lucky and get a negative result. Like Becky though I have resigned myself to the fact that it will be positive. I have already made my decision and will go down the preventative route if I need to. I do appreciate as I said in my earlier message that people will have different opinions and make different choices, which is entirely personal. MRI scans are not an option in my area.

As Joolz stated the programme was not meant to be a documentary about genetic faults, simply Becky’s story which in itself I thought was very brave, and possibly her way of dealing with it. I cannot see what personal gain she could have from this, nor did I find anything about the programme “sensational”

My reasons for the questions are to establish all the facts, and gain opinions from other women in my situation.

L xx

Hi Lisa,

I wish now I’d seen the programme so that I could add my 2p but think more information on all aspects of BRCA1 and 2 would be very, very welcome in well-balanced documentaries.

I do understand you wanting to start discussing surgical options with your doctor now, though, and think that’s absolutely a good idea. There’s no rush to do anything, but there’s nothing wrong with getting things straight in your own mind in anticipation of the results. I think it’s very sensible.

I only found out about my BRCA1 fault after being diagnosed with aggresive breast cancers (2 lumps) at 37. If I could turn back the clock, I would have had the genetic test as soon as I was able, and would have had all surgery possible as soon as I hit 30.

Although I know diet, exercise, etc. all play a part in avoiding cancer, I don’t personally think they’re enough. I’ve been vegetarian since I was 16, and vegan for about 14 years now, and that didn’t help me, unfortunately.

But like Courtney says, we’re all different, and it’s so good to have these forums to chat about these things.

All the best,

Establishing the facts Hi Lisa1974,

What you are doing is exactly what I did before I had my BRCA test. I did loads of research and got involved with research with the hospital I am under and this greatly helped me establish the facts before I made any decisions. I also wanted to be 100% confident in my decision before making any life altering decisions should my test come back positive. Well before my test I had decided to have oopherectomy as my mum died from ovarian cancer which is called the silent killer as usually it goes undetected until it is quite advance. Despite having two relaives with breast cancer I personally felt that having a masectomy was not the route I wanted to take yet as I was confident in the screening and medical care I recieve and this played a big part in my decision to not have masectomy for the time being.
I knew having oopherectomy would lower my risk and it was the ovarian cancer that was my greatest concern at the time. When the results came back positive I was 100% confident with my decision and was offered both masectomy and oopherectomy but the genetic team needed to be sure I had established all the facts before they were willing to go ahead and after speaking with them they were reasured I was confident to go ahead with surgery as I had covered all aspect involved. I mearly was trying to give you a insight to my experience, not to try and scare or upset you in any way but to ensure you to could say you had covered every aspect should you need to consider surgery, but I do hope you will be negative and not have to go down that route. I do understand what you are doing as I have been through the same and am in my 30’s and did hope that me answering some of the questions you had would help you to establish the facts you needed to make future decisions. Ovarian cancer is also linked with breast cancer and I was trying to make sure you were aware of this should it be discussed with you. I wish you the best and know that as long as you are confident in your decisions you will get through this.


my life or my breasts I would like to make it clear that I mearly was expressing my personal views on this programme, and feel that my views were take out of context .My views were made without prejudice towards Becky as a individual.I mearly was airing my personal feelings and opinions about the programme contents felt there was a good opptunity to get more information accross about brca and cancer and that it would of been good to see her a few weeks later. I understand not everyone’s opinions are the same, I also try and answer questions asked in order to help others have a insight into my experience, but you may not get a answer you like or agree with. Questions asked are questions answered, it may not always be a answer you like and sometimes other individuals can take my answers and views wrongly.


Hi Courtney

I am sure that your views were made without prejudice and totally understand your personal views. We all have different opinions and feeling about what is happening to us and that is totally fine.

What I am trying to gain from these forums is different view points and answers to my own questions, in which you have answered many for me.

The programme would have been a good opportunity to get some info out there. Unfortunately it was just about Becky and her experiences which I have to say did help me.

I think that in these types of things chat forums/txt/email can be misconstrued and taken out of context which is why we need to be careful with our wording. Whilst we are all clearly emotional when we are corresponding we need to ensure that we give a clear view, realising that people have different views opinions and feelings about things.

Noone has talked to me about options re ovaries which is something I have learnt here that I need to ask about, I was just told that I had a small increased risk of ovarian cancer if I had a positive test result.

Anyway I will ask more about it when I have my next appointment.
Thanks for the information
Take care
L xx

Really interesting Don’t usually come into this forum as I don’t (as far as I know) have the BRCA genes.

Thanks to everyone for such a well informed interesting discussion.

I am usually hyper critical of cancer TV programmes but I watched this and was moved by the story. I agree that the programme didn’t pretend to be a documentary…on the other hand I can understand the frustration of feeling there was a lot of inaccurate information.

I liked the way that the mother’s choice not to have a recon. was presented as a valid choice as well as her duaghter’s decision to go for one. Both choices showed very clearly that life is indeed more important than breasts.


I too watched the documentary, and think that everyones opinion is valid: there was no pretence that the documentary was intended to be an informative programme on BRCA1 and 2, but neither did it clearly show that this was merely about one individuals choice and journey, which can be misleading for the general public. Luckily though, there is only a relatively small percentage of the public who may have to face the same kind of decision as becky, but for those who do,becky’s story could be very influential on someone who may not be fully aware of all the options. i think the programme was helpful to anyone with the faulty gene who is intending on going down that route, as i feel the programme had a “happy ending”, showing becky to be pleased with her reconstruction, and feeling like a weight had been lifted from her mind.

As i chose not to go down the genetic testing route (up till now), i knew very little about it, and so came away from the programme thinking that mastectomy was the only option (not until i read this forum that i realised that it isn’t, so thank you!). It is pretty relevant to me at the moment, as my sisters are wanting to have the test (meaning that i have to too), and after watching that programme, one said that she would have a mastectomy if she had the faulty gene, thinking that it was the best option. I will now pass on to her that there is alternative ways of dealing with it, if it does come to that! I doubt i do have the faulty gene, as neither my mother or grandmother have had bc, only 2 of my aunties, but i think they have chosen to be tested because i was only 23 when i got bc. I’d rather not get the test, as i feel i’ve had enough nail-biting times of waiting for results, but i can understand why my sisters would want to know. oh, the joy’s!