Hi,
I was dx in july 2011 at the age of 39. My mother was dx at the age of 53 but no one else in family as far as we know (very small family) has been dx with any type of cancer. Therefore I can’t be tested for the gene as I only have 1 relative diagnosed. However I have 3 daughters age 21, 20 and 16. My eldest now wants to get herself tested for the gene as she has both myself and my mother and also a number or relatives dx with BC on her dads side. She’s currently in her 3rd year of Uni and I’m just worried about how she would deal with the info should she be found positive for the gene. ( I know she’s 21 - which makes her all grown up - but in my eyes she’s still a little girl. She should be having the time of her life not be worrying about BC). If she was found to have the gene would I then also be able to be tested? Advice please.
Hi Diddy6,
I have no direct experience of this so cannot offer any advice. There are ladies on here who will be able to, and hopefully they’ll be along soon. I just thought I’d comment that I saw a documentary about this a while back - I think part of a series on ‘becoming adult’ - where a woman in her early twenties was tested. She was given very extensive counselling first, as obviously she had to decide what she would do if the result showed she did have the gene. I can understand why your daughter wants this test - and why you feel she should be concentrating on having fun - and it is a tricky one with no easy answers.
Perhaps you could call the helpline people here (number right at the bottom of the screen if you scroll down) or speak to your own team and see what they think?
Sounds like you have a lot on your plate just now so sending a gentle hug
Hi there. I dont have a lot of knowledge on this subject but what i can say is that there is no cancer history of any type in either side of my family yet i was told when diagnosed i could be referred to genioligy if i wanted to. When i asked the oncologist about how to go out about it as she kind of fobbed me off a bit and said lets sort out your treatment 1st but didnt dismiss it completely. I have 2 sisters who i’m am concerned about especially as i’ve been diagnosed ar 33 so can understand your daughters worries. I have read info on the pluses and minuses of getting tested and i think it mentioned councelling or therapy of some sort alongside it as like Revcat said its not as straightforward as getting a yes no answer. Your daughter would have to have an idea of what she’d do if she found out she did have the gene. Would she want prevantaitive surgery or just get tested more often etc? I would suggest you give the helpline a call too and they might be able to give a better answer, put u in touch with people who can point u in the right direction and guide u along this tricky subject. Good luck.
Sian x
Hi Diddy6
I was tested for BRCA half way through my chemotherapy following a primary diagnosis of bc in 2009. My mum had ovarian cancer at 46 and my aunt had breast cancer in her late 50s and my own diagnosis at the age of 35 gave me a strong chance of carrying the gene. I had a bilateral mastectomy and oopherectomy to protect myself as mucH as possible. Unfortunately the cancer was always one step ahead of my and regrettably I was diagnosed with secondary cancer this March at the age of 38.
Had I have known that I was at risk of carrying the gene when I was younger, I would have had the option of taking action that would have completely changed the course of my life. I don’t know what the 20 year old me would have done, but at least I would have had the choice.
I have two daughters and two nieces who are at risk of carrying the gene and my fear is that they will choose not to get tested.
You daughter sounds mature and with the appropriate support and counselling will be in a position to make the right choices for her. The timing’s not great, so maybe you could suggest that she postpones the testing until after her finals. With the decision made, she may be able to put it on the backburner for a while and focus on enjoying her final year.
If your daughter tests positive, it should be easier for them to test you and also give you the option of taking precautions should you wish to.
Obviously, this is just my opinion and I know it’s not so black and white, but I’ve given this subject a lot of thought over the years and have quite strong views! Whatever your daughter decides, I wish both you and her all the best. Please feel free to PM me if you want to.
Moondog xx
Hi Diddy6
As Sian says, a call to the helpline might be helpfu. They’re on 0808 800 6000 and are open 10-2 today and weekdays 9-5.
You may also find our factsheet a useful read, so I’ve given the link here to the page where it can be either downloaded or ordered:
www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32
Hope you find this helpful.
Kind regards
Louise, Facilitator
Hi Diddy6,
My 28yr old daughter was tested positive for brca1(my 30yr old was negative) after i was diagnosed with bc in2010.I was also tested positive for brca 1 and also sequence changes in brca 2 after being tested because my mum had bc in both breasts,(she died at 51 and my aunt died at 41). After having counselling,6 wks ago she had preventative double mx.She is recovering well and is very happy mentally with the decision she made.When she is 35 she will have an oopherectomy too.My neice however,who`s mum died at 41 from this horrible disease,doesnt wish to be tested and I respect her decision(shes 25) so its a very personal choice,I hope your daughters get all the help and advice they need and good luck to you all.(i can give you my daughters email address if you or your daughter wish to interrogate her!!!)
best wishes Di.x
Hi
I was diagnosed with BC in May…my Mother and my nan unfortunatly had bc to.I have just finished my treatment yesterday infact and I have daughters 15 and 18.I have been referred to genetics for my daughters to be tested for the gene.For me this is a good thing as if they are positive they will get regular checks and be looked after , by not knowing would be more worrying for me.They are both fine with it all and want to go ahead…I feel proud of myself because hopefully now I have broke the BC chain in the family and live in hope that no one will actually die from this awful awful disease
Kate x
Hi Diddy6
I wish you and your daughter all the best with however you decide to proceed with this.
If a BRCA gene variant is identified in your daughter then the geneticists may try to find out whether she has inherited this from you or from her father so, in effect, you would also be tested, if you agreed to it, of course.
A couple of words of warning…
-
I was given very scant psychological/emotional support/counselling with the genetic screening process. It was a lot to get my head round and I don’t regret entering into the process but I did have to invest in some private counselling to help me especially in the early stages. My geneticist is very thorough, tenacious, professional and leaves no stone unturned so I do feel I am in good hands but she doesn’t deal with the emotional stuff.
-
It is not a straightforward process and it can lead to inconclusive results. It is NOT necessarily as simple as “positive or negative”. Gene variants come in many forms including some that are of unknown significance i.e. may or may not be pathogenic. This leaves the person:
a. not knowing whether to go ahead with prophylactic surgery
b. depending on the attitude of the local health professionals, may or may not get additional screening anyway.
Sorry if this muddies the waters but I didn’t want you/your daughter to go ahead with this expecting a lot of emotional support which you may or may not receive, or to be disappointed when there is no clear clinical outcome.
Hi Diddy,
sorry you are grappling with such a difficult issue. its enough to cope with breast cancer itself. Lots of helpful advice from others.
I would just add one thing. I have a brca1 mutation. My sisters/relatives could only be tested after my results came in- which took over a year ( I didnt know my family history and took part in a research study). They explained that it is easier (?)/only possible to find a gene mutation in someone who has cancer and so I was like ‘the key’.Once I had my result, my mum was tested to see if she had the mutation that they found in me- she did not. This is how they worked out it came from my father. From here, other members of the family could be tested. Hope this makes sense.
I think the exception to this is if you have jewish heritage. As I understand it, there are literally hundreds of possible mutations. So, I dont think you can assume that your daughter could be tested for a possible mutation.I thought it might save you alot of worry to know this- I think this is a process you have to take one step at a time or you will go mad.
But as puffy clouds says, she may come under a ‘low’ ‘medium’ or high risk. It is complicated. Your daughter could still be referred to genetics and she may still meet the criteria for screening.
As well as the above link from breast cancer care, if you go to the site breakthrough for breast cancer, they can send you a long and very informative booklet. If you cant find it, let me know and I will try and locate it.
The only other thing to ask is whether you have a triple negative cancer? This is sometimes (but not always) associated with a possible brca1 mutation. There is some new guidance suggesting that any woman under 50 with a triple negative cancer should be tested- if you were, and you could get tested, then your daughters could too.
Although it is very tough, and I agree with puffywhiteclouds (great name!) my own experience leaves me feeling that information is power, although it comes at very high price-my own decision to have prophylactic mastecomies identified a cancer that had not been detected on scans.
Good luck, Rattles
hi again
Thankk you for all this information it has been very useful.I will take my daughters to the first appoitment and like you say one step at a time…listen to what they have to say and then decide.I only finished treatment myself just yesterday so everything is so new…We may decide not to go ahead.Im sure I will be posting on here about it 100 times more in future.
Thanks again
Kate x
hi kate and diddy
its unlikey they will test your daughters unless they have tested you first… one of the main criteria for genetic testing is that the person being tested has had a cancer diagnosis and its very rare for them to test an individual without cancer, when there are family members alive who have been affected.
although its unlikely they will test them they would still most likely be eligible for early screening based on family history… diddy in your case your daughters would be at a moderately increased risk of getting breast cancer and therefore you wouldnt be eligible to get tested as they only test high risk or very high risk families. kate you dont say what age you were diagnosed at and what age your family members were either, im presuming you are in your 40s given your user name and if both mum and and mat GM were 40 or older this would put your daughters into the moderately increased risk group also… however there is a research trial which has been running for many years called the genetics of familial breast cancer study which does carry out genetic testing for families with 3 or more instances of BC or OC or if one individual develops bilateral breast cancer… the process can take up to 12 months, compared to around 4 if you are tested the nhs labs, but the criteria for nhs testing is normally stricter eg 4 or 5 instances of BC over 3 generations of a family… although it can be much less than this based on age and cancer type… for example there is more triple negative cancer in women carrying a gene mutation than in the general BC population, more bilateral cancers and can be more than one differnt cancers in the same individual.
even in high risk families who are tested only around 20% test positive so its much less likely to be gentic.
its good to go and discuss it all with the gentic team as they can explain your risks and give information as well as advising on breast awareness and early screening thats available.
basically anybody with bc under 40 will be able to have early screening for sisters and daughters between 40-50 and it maybe earlier as tehir is a trial currently going on to assess the effectiveness of annual breast sceening in 35-39, but we are still recruiting for that at the moment so the results wont be available for a good few years.
write a list of questions to take with you to your genetics appointment and hopefully you will feel more reassured. btw i carry the brca 2 gene and my 21 yr old daughter has no intention of getting tested yet although she has been to see the genetics counsellor, her risk at age 21 is still pretty low even with a mutation.
hugs all round
Lulu xx
There’s just too much information out there…I dont really understand any of it.This was just suggested by my consultant and oncologist so they must think I would be eligable for some kind of help.I will go with an open mind and see what they have to offer and listen to what they have to say…to think 16 weeks ago what I have learnt and had to take on having BC.All I’m intrested in is whats best for my daughters and if nothing is done or if they are classed as low risk then I know I have done all I can to protect them…they are only 15 and 18 but I need to know whats out there …we may not make a desicion this time but we will be armed with information thats personal to us and have something to think about if we decide in future to take any action…Thanks Lulu x
Kate x
Hi Katies,
Just saying that I sympathise- I remember feeling overwhlemed by all the info. I think when you get a b/cdiagnosis, you feel you need a GCSE in Biology. By the time you get to genetics, you need a degree!! To be honest, they will talk you through all these issues. As Lulu suggests, write down questions, dont be surprised if it takes a few appointments before you can take it all in. Last not least, take things one step at a time- I agree, your team would not have suggested a referral if they did not think that you and potentially your family would benefit but its important to have relaistic expectations, and be clear what it is you hope to acheive from the process.
Good Luck!
Rattles, x