I have recently been diagnosed as carrying th BRCA1 mutation. Needless to say I am horrified about the implications for me.
I wonder if anyone can help me with one thing that I forgot to ask the Genetics counsellor.
I know that having the BRCA1 mutation increases your risk of BC hugely (up to 80%), but am I am even greater risk of it coming back than a normal BRCA1 carrier as I have already had BC, or less because I have already had BC??
very confused as I think that my % risk of it coming back will helpme decide whether to have preventative surgery??
I read an article yesterday from Canada saying that the chance of recurrence is higher in those with dense breast tissue and it was significantly higher if they had not had rads.
I have had bc twice now. 7 years ago and again on opposite side this year. I am now being checked to see if I need to be genetically tested as my mother has now developed bc in her 70’s, her mother had it in her 70-80’s.
I DO KNOW that had I known it was likely to come back I would def have gone for pre-emptive surgery.
My oncologist has now advised that, should I test positive for gene or should my periods restart, she would advise removal of ovaries. I’m 43 and my periods never stopped whilst on tamoxifen but they have this time with chemo which i never had first time round. My second cancer has been worse and required mastectomy etc. It was in all my nodes too.
My breast surgeon said that only 1 in 5 get in other breast but really had I been explored 7 years ago re genes etc I would have just done the lot then.
I don’t know if this helps or not but if there is any way to stop yourself going through this horrible ordeal again then I wish I had known about it back then and I would have taken it.
Listen to your instincts too as I ‘just knew’ something was wrong in my other breast for years. I was not ‘heard’ by the medics in spite of yearly mammos and examinations until it was too late and it has rocked my faith somewhat.
I really hope you get some good answers and realistic advice from your medical team.
Generally speaking BRCA BC is aggressive and is more ikelyt to recur. I was told I had a 50% chance of developing a contra lateral BC. I was also told that the main threat to myt life was a recurrance of the original small but agressive BC which had spread to all my nodes and was in my blood vessels.
BRCA cells differ in some way to non-BRCA cells and because of this the tissue tumours are far less likely to be seen on mammograms i.e. less than 50% chance - it is a fact and has been researched and published. This means false negatives on mammograms.
Your genetics specialist should be able to draw up your family tree and compue a percentage risk but it is not entirely scientific of course.
Good proper and regular screening should be all you need.
Overian Cancer is closely linked with BC so overy removal reduces risk significantly and when you get to a certain age it is a no brainer. Quick op and quick recovery - easy peasy.
Feel free to PM me.
I would just like to say that your chances of a recurrance depends on the specific mutation that you have. There are many different types of BRCA mutations and some carry greater risks than others. Some are more agressive than others, therefore its imperitive to find out your mutation, its important not to generalise and assume that because you have a mutation you are at greater risk. There are many factors to be taken into consideration and in determining your own individual risk you should speak to your geneticist.
hi, i dont know huge amounts of the detail, however with a very strong family history on both sides, it was thought we could potentially have the gene on my dad’s side and that at 35 we would start to get tested, well guess what i found a lump on my 35th birthday, at that point i done what i had to, masectomy, chemo, rads and during this time agreed to be tested as wanted my family to have options - it was confirmed i had the BRCA1 mutation, along iwth my dad and uncle which is okay as out of 30ish people its stopped at me.
i had already decided to have my ovaries removed as wanted to do whatever I could, i was told that i was a much higher risk of it coming back on the otherside but couldnt give me figures, have annual mri on other side but have decided to have another masectomy and double recon.
Hope you come to a decision you are comfie with
I have BRCA1 and have had breast cancer twice. First primary in right breast and then four years later in left breast. I don’t know my mutation, but I’m getting some information from the genetics Dr December 23rd. This is to advise me if I am at risk of a third primary or a recurrance. Good luck to you all with your diagnosis.
Many thanks to you all for your comments.
It seems that it is very hard to get real information and percentages from the doctors. All i really want to know from the hospital are what are my %ages of it coming back in either breast or ovaries, the hospital just do not seem to be able to provide these specific figures for me.
I am just finding this very hard to come to terms with, and as yet have not been brave enough to tell anyone ( except hubby) anything at all about this.
I will push and push for the information, but I think that I know I need to have the operations, otherwise I will never be able to rest easy.
Take care all and thanks
hi, thats where i was, im a total wimp but couldnt live with the constant threat of it coming back other side - still waiting to have 2nd masectomy and recon to both sides but no matter how scared i am, going for it. i spend so much time panicing about it spreading and know it still could but will do what i can to prevent it if at all possible. They couldnt give me figures but did say it would increase the chance of occurrence on other side, plus it now seems like my grandma had it and she died of ovarian cancer xx
Hope you come to a decision which is right for you, its hard but deep down you will know what you need to do xx
Don’t think anyone on this site is a wimp at all. I think that brave decisions are being made daily in relation to this disease. Trust in your instincts! I wish I had 7 years ago and perhaps I would not be where I am now (and perhaps I would). DO what ‘feels’ right!!!
Best wishes to everyone at this Christmas and many more to come! Cx
Hate to be negative for you but my mum who carried the braca 1 gene got cancer for the second time in nov 2007. She had lumpectomy first timr wiht radio and chemo , the second time mastectomy with recon. Because of this and her two daughters experience with bc she suffered from severe clinical depresion and was in hospital as a result. mum had recurrence which went to her lungs and we could not save her. If mum had had preventative surgery she would still be with us but it is an enormous decision to take and comes with its own doubts and ifs and buts.
bernadette you sound very similar to me… i had 2 primaries one in each breast 3 years apart in right side first then left and only just found out im brca2.
i had a lumpectomy each time and now not sure whether to go for bilateral mx or not… the fact that it an Mx doesnt stop recurrence just apparently reduces the risk… well reduces the risk for people who havent had BC, but i dont think there is much evidence on how much it reduces recurrence…
obv its much harder to find a new cancer under a recon especially as you dont get mammos, but at the same time i dont know if i would want to have no breasts however if it comes back in my ‘current’ breasts i would have more chance of it being found due to exams and investigations.
oh decisions decisions!!!
If you are BRCA1 or BRCA2 and do have recon you are correct that you do not get a mammogram, but certainly in my hospital you would then gt an MRI each year, which is in fact better at detecting problems anyway.
I believe that with BC coming back there are two issues, or so my surgeon tells me.
The first is a reoccurance of the original bc that can occur anywhere in the body, a mastectomy will not reduce the risk of this.,
The second is a new occurance of bc in the breast, a mastectomy would reduce this risk down to about 1%.
I am BRCA1, and have had bc, for me I am petrified about a new occurance, and I am at this moment sure that a mastectomy is the way forward to me.
Good luck all
Having preventive surgery does not reduce the risk to zero so you cannot know what would have happened to your Mum in the same way I cannot know what would have happened to me or what WILL happen to me.
Anyone with doubts on this should be speaking to their genetics specialists - that is what they are there for.
Also, anyone (in this country anyway) can ask to be referred to the Marsden for annual checks at clinic and speak with the country’s experts.
Preventive surgery does not entirely prevent BC it reduces the risk by a considerable amount but there is still a residual risk and it would be very bad luck to go through and still get BC but it happens. Likewise having your ovaries removed does not remove 100% of the risk of developing ovarian cancer but it significantly reduces the risk of getting ovarian and/or breast cancer.
i am new to the forum. I also have BRCA1 and had bc nealry 5 years ago on left side, age 37. I am sorry i had the gene test done because now i worry every day about it coming back, getting ill, fighting through all that **** again. I now have 3 adopted children, very young, and it scares me to think i could leave them. I want another child but i can’t now. i am having my ovaries out this year as my periods stopped the first month of chemo and never returned. I will not have a mastectomy and put my self through all that only to get bc again. i try and stay positive but the worry does take over. i only have to have a cold and i worry. The treatment left me with the onset of osteoperosis which is daunting enough as i am very active especially with the children. i feel so guilty as my younger sister is now going to have the test done, if it is positive she will have the same worry. i don’t want her to go through what i did.
I’m so sad to hear how obviously distressed you are. Please think about speaking to someone to help you move forwards. You have 3 small children who rely on you and whom you clearly think the world of so you need to make the most of time you spend with them rather than worrying about something you have little control over.
I am waiting for my BRCA test results but my specialist has said he would bet a lot of money on me being BRCA1 positive based on my family history. I have a 19 month old little girl and am 35 weeks pregnant with my second girl. I was diagnsed with BC at 4 months pregnant and had an 18mm grade 3 stage 0 lump removed and lymph node removal in October followed by chemo (2 left!). I could sit here and worry about whether I’ve passed on the gene to my girls, I could worry about not seeing them grow up and become all that they can be but I don’t - life is too short (even for those who will never experience cancer or another similar illness). Cancer doesn’t need to be the end of the World, rather it is how we deal with things and make the most of our lives that count. We’re just slightl more complicated
As for your sister wanting to know - that is her decision and she must have thought long and hard about it. Think of the bright side, she will know one way or another and be able to plan for any eventuality. She will receive extra care and checks so that any lumps that may be suspicious will be dealt with swiflty and hence be more easily treated.
I’m not wonder woman, I don’t always cope with what I have been through, and I am scared about what my future holds. However I absolutly refuse to let cancer rule my life and make me live in fear…it’s my life and I am taking it back (she says to self on a daily basis just to give me the strength i need).
We aren’t alone and we have already been so brave and courageous in dealing with what we have. Be proud and don’t hide away in fear.
Best wishes for a bright and healthy future