Iv just posted about my operation news which I have no choice in having, otherwise well it isn't worth considering, but also yesterday my older sister had her BRCA gene test result and she is BRCA 1 positive.
I couldn't stop crying about it. I feel bad enough suffering with this disease and now potentially she is at much higher risk?
I just can't get my head round it, I really don't want her to have to deal with any of this.
My younger sister was BRCA negative a few months ago which we celebrated and I had told myself my older sister would be the same.
I am BRCA 1 positive but as I already have cancer it didn't effect me as much.
My daughter has her test at the end of the month and I feel so horrible that I may have given her the gene. It is only 50/50 chance but It's a horrible gift to pass on.
My nephew will now be tested too as he may carry the gene and it's not unheard of for males to get breast cancer, but it also increases I believe prostate cancer.
I know the option for more regular testing is good but the thought of having a bilateral mastectomy for both of us is just so daunting. There won't be much of me left soon if I elect to have it done.
Has anyone else any experience of the BRCA gene and had surgery or decided to take the route of scans only.
It is such a difficult decision!!!!
I know I have disease and it has to be removed, but what if there was no disease would you take the option of surgery??
Interested in any advice to do with BRCA.,
Hope you have all enjoyed the sun today,
Thanks for reading,
Mandy, xx
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Millie-c
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Hi Mandy, I can relate to your experience. I am a wee bit further along on the same journey. I am having bilateral surgery and reconstruction on 8th June. I am BRCA1 as well, with 1 of my sisters having a negative result and the other not going down the testing route. My brother getting tested and counselling in June, and my sons have just had their tests and awaiting results.
I had my abdominal surgery last October and am currently No Evidence of Disease, which I consider a good place to be at present. The ripple effect of this disease is just so cruel. There are other ladies on here who are experiencing the same thing. Difficult decisions, feelings of guilt and fear of untold futures for their children.
I am seeing my surgery as a way of maintaining as good quality of life as possible for as long as possible. There are a good range of ongoing treatment options for BRCA1 carriers.
I was originally just going to go down the close monitoring route, but a routine mammogram, with evidence of an undiagnosed tumour, that had been seen off by my chemo for PPC, highlighted the need to make a decision sooner.
I understand how you feel about, how much of you will be left. It's amazing how much you can live without. After much discussion about the pros and cons of implants, I have decided to go ahead with silicon implants, and am looking forward to having something added for a change. Looking to be around a while yet, wee old granny with great boobs.
It has been a great day today, plenty sunshine and met a couple of work colleagues for lunch today, and went swimming with my sister this morning. This has been one of the toughest years of my life, but one of the happiest in some regards. I have never been so time rich, and have taken the opportunity to make the most of every day, taking things slowly, learning to be patient with myself, and appreciating all the people who make a difference to my life.
You sound like you have a close relationship with your sisters too. You will help each other through this.
You sound like a brave lady, and to be going through surgery again you sound so strong.
I know when your faced without the choice it does make signing the consent form that bit more normal, but none the less good luck with the operation.
Good news about your sister not having the gene. It is such a relief when the test comes back negative.
Fingers crossed for your brother and sons.
Amazing news that you are no evidence of disease. With the statistics for oc I didn't think it was at all possible, but so many on here saying the same. I cannot wait until I hear those words. It must be a fantastic feeling.
I was so tired yesterday that I missed most of the sunshine but I'm going to try and make the most of it today and the weekend.
Oh my goodness Mandy you have nothing to be guilty for. You have not been foolhardy, malicious or negligent to get this gene, it's just an unlucky biological fault. I've often thought that the body is such a complex feat of engineering it's no wonder it goes wrong sometime.
There are some treatments which are available to those who are BRCA positive and not to those who aren't so it may actually be a little positive in a whole bunch of negatives!
It's not great news for your sister and she'll need a plan of action (or even ignore the results if she chooses ) but please get rid of the guilt as it will sap your energy for no good cause.
I manage to be guilty about many things but passing on faulty genes (I'm not BRCA but after genetic counselling they concluded I must have an unknown genetic fault because of my family history ) is not one I will take the burden of. My daughters are in the process of having genetic counselling but have been told it's an unknown quantity so plan to have their fallopian tubes and ovaries out in their late thirties anyway.
Have had a fabulous day out in the sun with my eldest daughter and grandson - bliss 😊.
I think at the moment it is on my mind with what is happening to me with the surgery being imminent.
I know the results are something we have to live with, and hoping time will be a great healer, helping us to come to terms with it all, everything is so raw at the moment.
We are a strong close family and are trying to stay positive as the testing and treatment available now does make a difference.
Sounds like you had a lovely day with your daughter and grandson. That is what it's all about. Making the time with your family.
I have always said that I would hands down take the option for surgery. I look at breast as just a small physical additions to your body. If you didn't have the disease yet, why wait until you get it and risk late detection. After all a double mastectomy could mean new boobs that don't get droopy like the ones you were born with. It means your boobs will look as perky as it did when you were a young girl. :-).
I was in exactly the same situation as you when I found out I was BRCA1 positive after my ovarian cancer diagnosis 7 years ago. Initially I was devastated about the potential risks to all the other members of my family but knowledge is power and enables them (and you) to make informed decisions.
I have two sisters - one tested negative and one positive. The positive sister has had her ovaries and fallopian tubes removed and has had a double mastectomy with implant reconstruction.
I have a son and two daughters. My son tested negative and my daughters tested positive. Both daughters chose to have double mastectomies one with DIEP reconstruction and one with implant reconstruction (at ages 25 and 22) and will have their fallopian tubes and ovaries removed before they are 40. My eldest daughter (now 31) has also now had a baby via pre implantation genetic diagnosis (PGD) which has enabled her to have a baby without the BRCA mutation.
My mother tested positive and opted for increased surveillance rather than surgeries. She was diagnosed with BRCA-related breast cancer last year at the age of 75 but fortunately it was caught very early and she is doing very well.
My niece tested negative and my nephew does not want to be tested.
Three cousins tested positive and two negative.
I chose to have a double mastectomy with DIEP reconstruction as soon as I could after finding out.
These are just the decisions our family made - they are not right for everyone. There are no right or wrong decisions - everyone deals with their risk in a different way and some members of our family did not want to know about it or took a few years to come to terms with it and decide to get tested.
Do not feel guilty - you are giving them information that could potentially save get lives. I have met many young BRCA cancer patients at the hospital.
I also run a support group for anyone affected by hereditary breast and ovarian cancer. You would be very welcome to come along and meet other people going through similar experiences.
If there is anything else I can help with please let me know.
Thanks Sharon, you sound amazing, quite a lot of family history there too so I understand how u know how I feel.
My daughter is only 19 at the moment so I think she will wait a while before any surgery. I know the gene doesn't determine age but it's such a lot for her at a young age.
I am pleased to hear about not passing on the gene to a baby though, I didn't realise that could be done, but I suppose this day an age nothing is surprising, I was worried for her knowing she had the gene whether she would want/have children. This puts my mind at rest a little.
What are the difference between DIEP and silicon surgery? I really must do some research?
I was offered an appt with the breast team but it was the same day I am being admitted for my Iv surgery, quite ironic really,
Where abouts are you in the country?? The group sounds great.
DIEP reconstruction surgery is where they remove all your breast tissue and recreate your breasts using your own fat and tissue (mine came from my tummy). or you can have reconstruction with implants - there are several different kinds of implant surgeries.
The Royal Marsden Hospital have produced a very useful Beginner's guide to BRCA which is available online. royalmarsden.nhs.uk/sites/d...
I live in Essex and we hold our meetings in Buckhurst Hill (London/Essex borders) a few minutes walk from Buckhurst Hill Underground station on the central line. Where about are you?
Hello. I can understand your worries as BRCA and other genes that I may have passed on have been one of my main anxieties. They didn't test me at first as I had no other evidence in my family but have just broadened the nets so I am being tested, awaiting results now. At least your family knows the risk and can take action even though it's hard for you all to deal with.
I think it is better to know than burying head in sand and ignoring the gene, but i wasn't really prepared for the anxiety of it all.
It's quite different having to have an operation than actively electing for one.
The best thing is the regular testing that is available so in the very least things can be caught early. Not to sound negative. I mean IF anything was to happen.
This is the first time I have felt the need to post a reply. Your post touched me as I have experienced all that you are going through. I was diagnosed stage 3a grade 3 serous September 2012 at the age of 54. I found out that I carry the BRCA2 gene one year later (my younger sister had breast cancer and my father died of pancreatic cancer many years ago and it is thought that we inherited the gene form him). Out of me and my 4 sisters, 4 of us carry the gene. I had a double mastectomy March 2015. This was a difficult decision to make but I listened to what my daughter said.....getting ovarian cancer/if it returns is out of my control. However, preventing breast cancer is within my control. My youngest sister who was 49 opted to have ovaries removed and double mastectomy with immediate reconstruction immediately. Another sister had her ovaries removed but is undecided in respect of double mastectomy. She has opted for regular screening. I too am fearful that I have passed this onto my children. Us 4 sisters have 12 children between us and we worry for each and every one of them. I can only hope and pray that some, if not all, have been spared. The choice you have to make is a difficult one and it is only you who can make it. I hope that what I have written will help in some small way.
If you have any questions at all then please ask. My thoughts are with you and all of the wonderful, brave ladies on this site.
It certainly is difficult to get your head round the fact that this little gene can have such an effect on so many people's lives, I do hope your children and sisters children test to all be negative but I suspect that is unlikely for all of them, what a lottery it is.
I'm 43 and my daughter is 19 so I do worry for her, it's about the children she may have too and whether it is passed on or not.
I heard earlier with intervention this can now be controlled, which sounds amazing.
I think I will go ahead with a double mastectomy eventually once I have sorted this oc first, sounds like so many on here do.
It is truly a independent choice, and everyone deals differently I know. Just want to help my sister the best I can.
I am BRCA 1 and have been through the ringer just like you. It's so difficult to deal with when you know your children can be affected and then your wider family circle. I was the first person in my family to be tested so really felt like I was to blame. I was very fortunate to have a fantastic genetic counsellor who helped me come to terms with everything and helped me prepare to tell my family.
I was diagnosed stage 4 PPC so dealing with that was difficult enough never mind this on top. I would say to get support from your local BRCA clinic or genetics team. Don't underestimate the emotional impact of it all. I carried the burden for a few months without telling anyone and felt like it was a dirty secret. I was so wrong and now I feel blessed that we have discovered it as my 23 year old daughter was positive and can now make decisions to have preventative surgery. I believe that this will drastically reduce her risks of getting cancer, even lower than the general population risk levels.
My brother, uncles and cousins have also tested positive and there have been some negatives too. We've gone from a family that knew nothing about it to it spreading quickly. We all feel empowered now to make decisions. Please talk to someone about it preferably a professional or support group. I have been to a few conferences and gained a lot of knowledge doing so. They ask me to speak at the last one in Belfast to share my story. They are a great bunch snd very supportive. I'm on a course at the moment to be a peer mentor for families with BRCA through a local cancer charity. Happy to have a chat if you need info or support. My number is 07788547109.
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