What comfort this has just given me in only a few moments…I’m really not the only one out there.
I am 32yrs I am happily married with 2 boys (5 & 2yrs). We have a history of breast cancer in our family. My grandmother died when she was 34yrs, all of her daughters (the youngest being my mother) have had breast cancer. My dear aunt (the middle sister) lost her battle nearly 3 yrs ago and my mother shockingly was diagnosied only 1 yr on from this terribe loss. So the journey I’m on has been a hard 3 yrs and this twist has been difficult to deal with.
We have been trying to establish for 20yrs a genetic link and 6 months ago we had the breakthrough. Geneticists have found a ‘misprint’ in the Brac 2.
Both my sister and I went for gene testing and last week I was confirmed to have the gene and my luckly sister doesn’t. I’m so pleased for her but like one of the other ladies out there I just wish my news could have been the same as her.
I’m in the process of organising bi mag but do have concerns over reconstructions and how they feel. I’m tiny… Not sure about the nipple bit either?..
If anyone has any advice or just can share their story it would be amazing. Friends and family are great support but I crave to hear from someone else that has been through this.
Welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site.
While you are waiting for replies I have put for you below links to a couple of BCC’s publications that you may find helpful. Also if you would like to talk to someone in confidence then the helpline team are also here to support you, do give them a call.
Stupid thing keeps timing me out and deleting my posts boo hoo
Hi mostly
I’m brca 2 found out after cancer and couldn’t make my mind up about surgery either… I also work as a genetic breast care nurse and know for many it’s a very difficult decision to make… Some people know right away what they would do but others wan to consider it fully before commenting to surgery… Some decide not to have surgery but just have screening… I still haven’t had a double mx and havin treatment for a recurrence of BC in my chest muscle.
Surgery doesn’t prevent you getting BC completely but reduces the risk by 95% making it less of a risk than the general population.
For ovarian risk there isn’t any reliable screening so the only option for minimising risk is for tube and ovary removal we normally recommend it at 40 or after your family is complete… It reduces the risk of ovarian cancer by about 95% and also cuts the risk of breast cancer in half.
A couple of good books you might find helpful are I’m still standing by Wendy Watson and positive results by joi Morris and ora Gordon.
Hi Mostly, sorry you have had to join this site, but glad your joining as a non breast cancer lady…
I am brca2 and was diagnosed after cancer, i had my first mastectomy and recon done, followed by chemo, during this time i was tested for brca faults. I waited a gruelling 11 months for the results, i had already made my mind up i would have another mastectomy, i also had a full hysterectomy…
I have becker implants, which are put in only partly filled, and they are slowly inflated, through a small port under the skin, over a few weeks to stretch the skin… I havent had my nipples done yet, but will have them done at a later date…
My younger sister has just got her results back and she is positive too. She is know in the process of counselling and starting the ball rolling regarding surgery…
Hope you get on ok, if you have anything you want to know just ask.
Thank you for your message. Your so right I’m so lucky to have found out about my genetic mistake pre-cancer. I’m the first in my family to have this blessing. It is strange to be armed with this information and I could almost describe it as an out of body experience or when I tell people I have remind myself that I’m talking about me!
Having seen so many of my family go through cancer there is no way in hell I’m not doing the risk reducing surgery - quite frankly I’d be mad. It is just good to hear peoples stories on reconstuction as my mother chose not to have one.
If you don’t mind me asking what are you doing about a nipple reconstruction and how long will it last?
Thank you for your message. I love the pink hair!! I recognise those chairs from endless chemo visits with my mum. Thankfully she is now finished and has just had her ovaries out as a precaution just like you mentioned.
As I mentioned to Sharon I’m without doubt going ahead with the surgery I just need to swot up and understand the reconstruction options. I never thought it would be such a big deal to me when I was first doing genetics some many years ago but now with young children, swimming etc I do feel I want to get it right.
Thank you for the suggestions in your message it is so good to hear from people I just can’t tell you.
Hi Mostly,
Another BRca 2 here. Like Sharon and Lulu I didn’t find out until after I had been diagnosed aged 41 2 years ago. I found out just after I had finished all my treatment. I remember feeling like I was a walking cancr time bomb. It was abit of a shock as I didn’t have a family history of BC, only 1 cousin, but my Dad died of pancreatic cancer aged 34 which is what triggered the test as BRCA 2 also increases your chances of pancreatic cancer.
I had 1mx as part of my treatment and another risk reducing mx last year as well as my ovaries out. Both times I had the ld flap reconstruction with an implant ( expander filled with saline not silicone) the other option I was given was the tummy one and although a tummy tuck sounded great I didn’t fancy a scar from hip to hip and if I put on weigh after the op you can get a not very nice looking overhang (I’m a size 16 so prone to weight gain) My scars on my back are slightly diagonal and have faded nicely and psychologically it helps that I don’t see them everyday, sounds silly I know.
I don’t have sisters just brothers and 1 has had the test and he is negative for the gene. I have 3 boys so I want them to be tested when they are old enough. I had a hard time knowing that I might have passed this horrible gene onto them. I am currently deciding whether to be part of a trial into pancreatic cancer screening programme which could involve an annual ct scan, blood tests, and stomach juice sampling!
If you want to know anything else just ask.
Cat
I know exactly what you mean. I’m so worried that my two boys may have inherited this gene from me. I know the risk is lower to them in terms of BC for men but the other complications of Brac 2 make me so worried. When I tell people they just keep saying well thank goodness you have boys…little do they know or realise that they can also carry this gene. So weird peoples perception. I feel like all I’m doing at the moment is explaining to all my friends it is so nice to speak to someone that knows and has the same fears I have.
I asked if I could gene test my boys…I knew the anwser would be no and I know the only one to gain would be me. Because all I’m doing at the moment is wondering whether like my sister and I 1 might have it and the other doesn’t. So hard. I only pray that in the years leading up to their test that this horrible disease may be even easier to overcome.
I know even with risk reducing surgery I never 100% rule myself out of breast, ovarian and pancreatic cancer but I’m so grateful that I’ve found this out now. I’m only sorry that ladies like yourself didn’t get to know sooner.
Meant to also say Cat any trial must be a good thing. My mother is on an avastin trial as she is ‘Her 2’ with her trial she is closely monitored for 10yrs…far more than the average BC survior.
If you don’t mind keeping me posted on your decision it would be very interesting to hear from you again.
cat thats interesting i dont really have any family history either its actually even less than you… my dads uncle died from pancreatic at 43 and his cousin so my 2nd cousin twice removed or something like that died of ovarian at 45 and all our relations inbetween are men and then theres me with bc at 37 and 40 and recurrence at 43…
is your involvement in the research trial because of your dads panc ca or because of you having the gene or a combination of both?
my dad is a brca research trial too but cant remeber what its about exactly.
Hi Lulu,
It’s such a shock when there seems to be no family history isn’t it. Part of the problem for me was lack of female relatives. My dad was one of six boys, I had three brothers and out of my cousins on my dads side there are 4 females and ten males. Out of the females 3 of us have now been diagnosed with BC. My cousin who was diagnosed about 10 years ago and is still ok was tested for the BRcA 2 gene last year after my diagnosis but came back negative, which was another shock. My other cousin who went through treatment last year is still waiting for her result.
I was tested because I felt there must be some sort of family genetic trait as 1of my brothers died from lung cancer aged 31, Dad at 34 and me getting BC at 41. The nurse who decided to test me said I didn’t really fit the points criteria but she had a hunch!
The trial is called Europac and based in Liverpool. I was accepted because of my dads death from pancreatic cancer I was considered high risk ( had to produce his death certificate!!!). It not just BRCA 2 being recruited, also families where there was a history of pancreatic cancer. It’s to try and find an effective way of screening for pancreatic cancer as I’m sure you know outcomes for this type of cancer is poor as it often is not detected until it has progressed quite far.
I am still unsure partly because I’m currently being investigated for lung mets. Found 2 spots on my ct scan I had a couple of weeks ago but report says not mets but not sure what it is so have to see chest expert tomorrow and possibility of camera etc. But also you have to go to Liverpool for the initial appointment, but after that all the tests etc can be done at a hospital local to you, mine would be UCL in London. They say you can agree to all the tests or just the blood tests etc. Irrationally the thought of an annual ct scan which you think would be reassuring is what is putting me off. The anxiety I went through with this last ct is not something I think I could do on a yearly basis!
Cat x
It is very interesting… I have a few families on my books who have a gene mutation and somebody of the ones who are affected by cancer still test negative… Sporadic cancers can still occur in families with mutations too.
Think I’ll have a look at the info on that trial too.
I know what you mean about the ct scan… I part of me thinks I’d rather just live in the oblivion of not knowing if something sinister is happening until it happens to cause me symptoms… But the other part of me says no if you got a chance to find out youd want to know LOL
Fingers crossed that your lung spots turn out to be something benign.
