After 50 odd years I have just found out that I am an identical twin!( Knew I was a twin) now we need to work out where we go from here!
I have had DCIS in 2005 then further cancer in 2008 and had chemo, survey and radiotherapy. Am on tamoxifen now 3 1/2 hrs. My twin has not had breast cancer.
We are going to talk to the genetic doc and will probably go through testing to see what affected genes I have, if not will net the research programme.
It’s the if they find the mutated gene I am concerned about, another operation as a preventative for further breast cancer and ovarian - which I am more concerned about as saw a close friend die of that only ov a year ago.
There’s a lot to think about, could do with some help on what I should ask!
Thanks
Jan
hello oldtimer. finding out your an identical twin,…wow…you dont say how you feel ? but i hope it is a happy finding for you , im not sure but if your identical twins i think you have exactly the same DNA and if this is the case tecnically you are one and the same …certain cancers tend to run in familys… but if your twin is ok hopefully this is a good sign…there are lots of pros and cons about genetic testing… and you have to be assessed by a psycologist before testing is done, a friend of mine has a mutant gene and is at present awaiting proventative surgery (a double mastectomy ) and at a later date ovary removal too… she already had triple neg breast cancer… this decision is rite for her … her daughter and sister are both negative to the mutant gene… but her mother is possitive… her mother has not had cancer and is not having any preventative surgery either… that decision is rite for her also… before you make any very life changing decisions, find out first if you do have a bad gene, and take it from there , but if you decide to take the gene test … some people would rather not know…you may not have a mutant gene, it could be that your just one of us ladies who for no reason gets breast cancer … i hope everything turns out well for you both angie xx
Hi angie
I wasn’t sure what I felt and also had a mixture of feelings. it is quite amazing, we look more alike now than when we were young but there are differences due to life experiences and I guess other factors.
We are at the very beginning and will be talking over what next before going to the genetics dr again. As you say it may just be pure chance, but they do believe it possible that I have a gene predisposing me to breast and ovarian cancer. The ovarian is a shock to me as I have a small deposit on my spine and had Bonefos for 2 yrs. I had DCIS then a second br ca nearly 4 years ago.
So as you say what I have my twin has and so from now on it will be a shared decision.
Feelings of guilt, anxiety for my kids and grand kids, concern for my mum and others if I need an op as a preventative. Feelings of awfulness for my twin, it’s not just me now but her too
Fascination too at the research that is going on and I would be part of it, also research into ovarian cancer which I would like to be part of as a close friend died of this last year and within a year of being unwell, 7 months after diagnosis. Very sad
Thanks for your comments and will keep posting
I know its not the same but I have been in touch with a half sister as a result of my diagnosis with a brca1 fault. We did not know each other while growing up- it is a very strange experience on its own, without the brca/cancer issue. I cant imagine how it must feel to meet your twin after so long, I hope you are both managing okay.
Re. testing; there is alot of support to help you think through issues/risks and what you both want to do. You might want to look at the thread above/below this about brca faults and type of cancer as some people think this is relevant.
Hope this helps. Rattles, xx
Hi old timer
you don’t say what age you were diagnosed as that would have a bearing on whether you fit the criteria for testing. Do you know your family history at all? With just one individual in a family affected by breast cancer it is less likely to be genetic than if there were lots of people affected (doesn’t rule it out altogether though) but may mean you won’t fit the criteria for testing as they tend test families with a very high risk of testing positive and only around 20% will actually be positive.
The genetics of familial breast cancer study will test individuals who have bilateral breast cancer but no longer test for Those with DCIS so I’m not 100% certain that you would fit the inclusion criteria for that but your genetic team can get in touch with the icr on your behalf especially if you dont have any info on you’d family history.
Older onset bilateral cancer tends to be less likely to be genetic than if you had the first cance before 45 but like anything there are always some exceptions.
Fingers crossed you dont have to worry about risk reducing surgery.
Lulu x