Breast Cancer Now Forum

impact Hi, I was advised to ensure mortgage and life cover/critical illness was up to date and in place etc....before I had test. At the minute the ruling is that the companies can ask if you have been tested for genetic problems but you do not have to divulge the outcomes of such testing. This however is trying to be changed by the companies - who want to make it automatic that you divulge this info. Before I was tested (as I was certain I was BRCA 1 positive) I renewed my mortgage and took out life cover/critical illness cover for thirty years. Then had the test. If you want to be referred for the test - the genetics counsellor will go through all of these complications with you - and provide you with the most upto date info - so you could still investigate this - so you are registered with the genetics people - and then sort out your affairs before the test. I was tested last year - so things may have changed. Good luck - it is a difficult time as it is - without having to deal with all of this too - hope it goes well, Orienne ... View more

Hi Hi Tracey, You must not think you are selfish. Im really sorry to hear that you have lost your mum and had to watch her suffer. I am also sorry to hear that you have lived in fear ever since. My story is different to yours - as my mum got bc twice - once at 52, then again at 57 - however she is 62 now and is still going strong. We found out she had the gene - so I made the decision I would have the test too. My reasons were personal - but they were based on the fact that I did not want to live my life in fear. I was found to have the BRCA 1 gene and am now working out what options of recon I want - I know for definate that I want preventative surgery. Like Lisa, and all of us who have followed the genetic testing path - we get angry sometimes and life is not always easy - far from it - but I would not want to not know. The everyday fear of getting cancer - and not being able to do anything about it - is the thing that keeps me going. But I would start with your gp - but then research all your options like Lisa did. I spent all my time preparing myself for a positive result - which when it arrived I was totally fine with - but had spent no time looking into breast ops etc....before my test I felt I would just be screened - but knowing I have the gene has pushed me to want breast surgery - so all the options etc... have been another huge hurdle to get over. This sight is brill for reading the forum and picking up what others are facing etc.... and there are some amazing people on here - to help you through. I would also use the other site as Lisa says it allows you to private message etc....which might really help you. If you find us on the other site dont hesitate to get in touch, Good luck Tracey , Orienne ... View more

Thanks Lisa Thank you Lisa, I did see the programme - it must be weird seeing your people on there though!!!!! I think the programme raised alot of issues for me and kicked me up the proverbial to do something - had been head in sand before I watched that - so that were my reasons for liking it. Thanks for advice on other web page - will post angela there too. I know what you mean about being all over - I just sometimes think it never will be. Once I have over come the hurdle of the breast op - its then the ovaries - if I can squeeze having children in beforehand!!!!!! My life seems ruled by it - and sometimes I resent that - but I aso see I have choices to try and save myself from this - so I try and remember not to be so bitter. Keep writing those questions - I went in for my first appt and was so blown away with what he told me I don\'t think I asked much - hopefully seeing him soon to discuss it further - and like you I will take a list!!!!lol!!!! Good luck on 26th and keep me posted on how you get on, Orienne ... View more

For Sandra You are one brave lady!!!!! I say this as I know how difficut it is to face the decisions that you are facing at the moment - the only thing that pushes me is that nagging thought in my head \'I have the gene\' - otherwise I think I would put my head in the sand - a skill I never used to do before all this came along - lol! So to do this and then have the gene test - I think you are remarkable. Im so sorry you have lost your sister - its dreadful to face all of this in the shadows of losing someone you love. I have been lucky in some respects as my mum is the only living relative that has had cancer - to date - she has had it twice - but always found it early and not had to have chemo etc... she has been lucky to have nine years (and counting) after her first cancer. I hope all is well with you for the 27th - and thank you so much for offering me advice and comfort when you are still facing many hurdles. There is no one way to cope with all of this - it is such a horrible bombshell - that if we all survive through it I think sometimes it would be a bloody miracle!!! Keep chin up, Orienne ... View more

For Jane Thanks Jane, I really agree with you - I sometimes feel they offer recon as it is expected this is what women want - which is why I think after speaking to my breast care nurse I feel weird - cos Im made to feel weird. Im glad it all worked out for you - and that you are happy with your surgery - I read so many stories on here where things have gone wrong and it seems such a gamble. One that I don\'t want to take. You are right I need to take time to decide - and although I want to get rid of the ticking time bomb - I need to make the right decision too. Speaking to all of you on here really helps - so thank you for all the replies Orienne ... View more

For Sandra I don\'t mind at all!!! It was lovely to hear from you!!! Thankyou for your honest and open answer - and I\'m glad everything is ok with you. You are right it does take alot of soul searching - and I know I\'m still in that stage at the mo - so although I want surgery to get rid of the ticking time bomb - I know I can\'t rush it until I have faced all the options and the demons that come with them. Can I ask did you feel confident not wearing a prostectic? Or did you always wear them? And is it really difficult to get clothes to fit properly - I wonder how hard this may be? I keep trying to work out whether people would stare at me if I was completely flat chested - or whether I would imagine them staring which is probably the most realistic one really. I also keep looking at other women\'s breasts - (which is a habit I need to stop - lol!!!! ) just to way up how I would look compared to everyone else. I also realise that , like you, if I go for no reconstruction now it limits my options if I change my mind later on - so then the circus goes round again and Im back to square one!!!!!!!! I know I\'ll get there in the end - and speaking to people like yourself really helps - so thank you for posting back - I really appreciate it!!! Oriene ... View more

Message for angelarob1 Hi Angela, Hope you don\'t mind me contacting you - but I put a post out about not having reconstruction and Lisa1974 said you opted for no reconstruction. I just wondered why you made that choice and how have you found it? I am BRCA1 positive - and don\'t like the thought of implants and them being replaced every 10-15 years - more if things go wrong. I don\'t like the thought of taking muscles out of my back, and my surgeon said I was too small for any removal of fat from my hips and stomach (although I disagree!). I just wonder if you are left with dents and that women with no reconstruction have to wear prosthesis or not? I have spoken to my hospital to ask if anyone there has opted for no reconstruction - but they don\'t - so Im starting to think i am strange. Would love to hear from you and your thoughts, Orienne ... View more

Message for angelarob1 A new user has started a topic, which is currently being reviewed before setting live. ... View more

For Lisa1974 Thanks for your opinion- its good to hear other women\'s views. We are quite similar as I am 34D so not far behind you. Although I really like my breasts too - I know they are not going to look the same what ever I do - my consultant has recommended not keeping my nipple cos of the risk of breast cancer - tell me what your consultant says and we could compare notes. I\'m sorry to hear you are positive. You sound as if you are staying positive though. I think my mistake was that although I was ok with getting my results I had never thought about having my breasts removed. Always thought I would just be screened - but now I am positive I feeldifferently - like I can\'t take the chance. So all this surgery stuff is just a bit mind blowing. How would I contact angelarob1? Is she on this forum? Im new to all of this so am a little rubbish at working it all out. So glad I have found the site though - and wished I had found it years ago - nevermind. Hope you appt goes well with the consultant - and you must ask if other options are open to you - I live in Huddersfield but am receiving my treatment in Nottingham - so you may get referred elsewhere if you wanted more options. Thanks for replying and I hope all goes well with your surgeon. Orienne ... View more

Help!Thinking I\'m weird! Im beginning to think that I am weird. I have put a posting on the reconstruction section - but want to know what other \'gene\' carriers think. I have been diagnosed with BRCA 1 - and at the moment trying to get my head round reconstruction. There seems sooooo many types its untrue - but I am getting there. I just want to be medically better than I am now - and it seems to me the whole reconstruction thing is such a gamble. I don\'t want to go from being \'healthy\' (if carrying the gene is classed as healthy) to having to deal with implant problems or replacements, back trouble and pain or scars all over. I want my breasts gone - but dont want to sign up to all these other gambles. Am I strange for considering no reconstruction? Am I underestimating how horrible it will be without breasts? Because I\'m so shallow I keep looking at my Trinny and Suzannah What not to wear book - and looking through all the flat chested sections - and keep thinking I could possibly do that. But am I in denial? I would really appreciate any other women\'s opinions - or thoughts from women that have not had recon. Confused, Orienne ... View more

Help!Thinking I\'m weird! A new user has started a topic, which is currently being reviewed before setting live. ... View more