hi ruth i have had breast cancer twice at 38 and 40 and have the BRCA 2 gene.... im going for preventative surgery in a few months.... but very worried about it all.
i also work in breast cancer genetics so i see women in your situation at work regularly..... the problem with not finding a genetic mutation in your sister means it is probably that you have an as yet unknow genetic change... there is lots of research going on to try and identify these other genes but this may be a long way off.
they can only test affected individuals for genetic changes as an unaffected individual may have a gene change which may or may not cause cancer but because they dont have cancer it can be hard to see if it is a cancer causing change..... there are many hundreds of changes in both brca1 and brca2.
the majority of women with a strong family history who are tested do not find any gene change and genetic mutations make up only 5% of breast and ovarian cancers... it can be frustrating when you have a very strong family history as you have but you dont know if you carry a gene or not which means if you opted for preventative surgery it would protect you from breast cancer but as technology progresses it could be discovered in the future that you did not have a faulty gene after all so your risk would be that of the general population.
if you had the preventative surgery and you could live with the thought that a gene could be discovered in your family in the future and that you werent a carrier, then go for it but if not then you would need to really carefully think about it.
your genetic department should be able to refer you to a psychologist to talk through these issues and you can also be referred to speak to a plastic surgeon to get advice before amking any decisions.
I can't understand why they won't test you for BRCA with that history, yet will perform expensive and difficult surgery. Makes no sense:at least you might then have a better idea what you are dealing with. From my point of view, (mother of three young daughters and bc survivor), I did not want to take any chances at all. With BRCA1 you are also at high risk of Ovarian cancer which has no obvious symptoms - so the first surgery I had was salpingo oophorectomy. I went for the mx and double recon after that but didn't want implants - they need replacing ev 10 yrs or so, don't age with rest of your body and I wanted to use my own body (DIEP). (Some of us don't see that as a drawback!) Also want to reassure people about LD flaps. New surgery ISN'T replacing LD - not everyone wants implants - and results of LD can be amazing too if you have an experienced qualified plastic surgeon. I had mast scar on one side and skin sparring mx on other - don't risk keeping your nipples if you had cancer there - and it's easier to match 2 new nipples than one old one. As for those about to undergo LD flaps, I had one and have returned to playing badminton, golf, the gym and swimming. Am very pleased that new techniques are working well for those other brave ladies, and thanks for posting about them it's good to know about. Good luck to everyone about to have surgery of any kind. xxx
Sorry one more thing.
This site is just so brilliant, it will give you so much information.
Please use it, it will help you so much.
Three weeks ago I went through a double preventative MX with reconstruction.
If you have any questions I will try to help.
No one can understand how hard it is to make the decision to go through this surgery. It is the hardest decision that you will ever make, and I can say the weekend before I had my operation I nearly did not go through with it. I had to basically trust my husband, as I knew he was the one that was thinking straight not me.
I have BRCA1, and two daughters, and I know that I am not prepared for breast cancer to destroy me. I had BC 2 years ago.
I have just had the strattice operation, if you look in the reconstructive surgery forum, you will see my comments on it. It is a new operation, and has benefits over a lot of other surgery. For me, I had to have reconstruction, as I did not want to be without breasts, and this surgery does not use any tissue from other parts of your body, so it is much less invasive, and the recovery is much quicker.
Good luck with your decision.
My sister had a preventative double mx because of lousy family history - I was diagnosed with breast cancer at age 35 and our mum and grandma died from breast cancer.
I was tested for BRAC1/2 and it was negative for that. So basically, we are highly likely to have a faulty gene in the family but they haven't yet discovered it.
You are in a similar position to my sister - there is a 50% chance that you also have the faulty gene but don't know if you actually do or not. My sister spent about a year saying "but I might not have it" then realised that she couldn't take that risk. The stakes were too high.
There are quite a few women on http://www.bcpals.org.uk who have gone through the preventative mx/reconstruction and they also have stage-by-stage photos that you can view after a few posts. Post on the genetics forum then ask to join the private preventative measures section. I know they will give you a really warm welcome and answer every question you have. It is less scary when you can talk to others going though exactly the same.
Also, this website is very useful for explaining the different ways of doing reconstruction: http://www.optionsforbreastreconstruction.com/intro.html
Hi Ruth and welcome to the forums
In addition to the valuable support you have from your fellow users you are also welcome to call our helpline, here you can talk through your fears with someone in confidence. The number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2.
We do have a publication called 'Breast cancer in families' which you may find useful although I realise you may already have access to most of the information it contains from the family history unit:
The most important thing to say that is that this is a decision that only YOU can make. However, I was diagnosed last May, aged 38 and with a 9 month old baby. Some family history of related cancers but no breast cancer. Have had genetic testing done but still waiting for results.
Had tumour removed and radiotherapy. Have since made the decision 'encouraged' by my surgeon to have a double mastectomy with immediate reconstruction. Am having the op next Tuesday, so starting to get seriously nervous. If I didn't have my little boy, I don't know if I would have asked for the operation, but I feel that I want to do ANYTHING I can to keep me here, and keep me safe for him.
Good luck with your decision. I know that once I finally made my mind up, then I felt a lot more relaxed and knew I had made the right decision.
Love and hugs
The fear of getting breast cancer is terrible for any woman but with a family history as yours and the repeated lumps it must be ever so more profound. I watched a progreamme - my breasts could kill me. there was a woman on that had the operation you are refering to. don't know if you would be able to get to see the programme somehow.
As a mother with two small children and advanced breast cancer I would rather not take my chances if I thought I was at risk - I never ever thought I was though. I can't help with what you are asking but I just want to send my best wishes - I do hope you get the information you are looking for.
I have posted this for new user Ruth
Hi all you 'fabulous' ladies out there. Im 38, have an 8 month old son and live in Cornwall, uk. My sister was 30 when three years ago she found a lump and was given 6 months to live.
With her being a district nurse - she knew what was in store. She's still going strong and Im overwhelmed by her courage and determination.
On hearing this news my father - then came out with something we didnt know, and its hard to grasp as I type this, the kind of news that shatters your world. ALL four of his sisters DIED of breast cancer before they reached the age of 55.
I immediately started going to the Mermaid Centre and they found a lump. I was cleared of cancer but then another came up, and another.... and I was pregnant. Im still clear - but for how long? My family history has been done - VERY HIGH RISK - they wont check me for the BRACA gene as my sister is negative for it. They have offered me a double mastectomy with reconstruction - boy am I scared. Is there anyone out there willing to talk to me about this operation - what it's like, how do you feel, what kind did you go for..... I have so many questions. THANKYOU! Ruth. xxx