Hi,
I have 3 daughters and keep wondering whether I should get genetic testing or not. I spoke to my onc and he is very against it because he says it would be awful to have that hanging over their heads for years to come. He says it is enough that they know to check now and can be scanned from 10 years before I got mine.
I am going for a casual chat this week as my unit have a genetic clinic and hope to get some general advice. Are they able to say whether you have an average/low/high chance or is that not possible? I got it at 48 but the line I got Bc from has very few women so hard to track. It was also of jewish descent 4 generations back, which is another possible concern, although not Ashkenazi from what I can tell.
Your views would be of great interest to me as i make this decision. When i think of my blissfully happy years having my 4 children, I know I would not have wanted to know as would not have dared to have 4 kids and would have been going for surgery. However we don’t all think the same way and I really want to do my best for them now I have put them in this dodgy position.
Thanks
Lily x
if so then theres not much benefit to being tested… and would find it hard to get testing too usually unless there are at least 2 or 3 family members… but dont think at 48 that would be a reason to do it on age alone.
i was diagnosed at 37, 18 months after my mum was diagnosed at 57 and 1 have a younger sister and a teenage daughter but we didnt qualify for genetic testing. however there was a research study for the new gene and i joined it and had bloods sampled and it came back saying it was negative and can never have another test… was quite abrupt and not all that reassuring tbh… i mean why would i need another test if it was negative?.. but was pleased it was negative though.
maybe what you have to ask yourself is what would you do if it came back positive? do you really want to know? would you tell the girls or not? would you get them tested or not? is there any benefit at this time to knowing?
Hi Lily, I would advise you to get tested. I have and I don’t have BRCA 1 or 2 but because of some family history and my genetics clinic’s great help, support and advice my sister chose to have an oopherectomy and has yearly early mammograms and my daughter can contact my genetics clinic from her early 30’s. Yes it will be a worry if you are discovered to carry a BRCA gene but at least your daughters can then take the test themselves, if they want to, and access any support and help they might need to make any decisions in the future. Information is scarey but, for me, I think it’s the one useful, constructive thing I’ve been able to do for my daughter before I die, I have secondaries. My genetics clinic were very understanding people. They invited my daughter, then heavily pregnant with her first child, to attend my appointment with me. She attended and wasn’t unduly alarmed. Some genetics clinic will let patients assume if they are BRCA negative all will be well but the genetics clinic I attend have pointed out there are genes as yet undiscovered and they offer the safety net of screening but again the choice is yours. Even though I have stage 4 bc my clinic have offered me ovarian cancer screening.
Belinda…x
I believe forewarned is forearmed. Genetics will assess your risk based on your family history. Cancers they will be particularly interested in are breast, ovarian, prostate and pancreatic. If you are found to have a mutation then your daughters will be eligable for testing, though bear in mind they won’t necessarily have a mutation just because you have, they have a 50% of inheriting it from you. The benefits to knowing about a mutation is the access to screening, breast and ovarian for females and prostate for men. I have a daughter who is only 15, she may or may not have a mutation, she may or may not get tested but the choice will be hers. Like Belinda I want to ensure that she gets screeing from the earliest possible age, its important to me that she knows what she’s dealing with and what her risks are. Only you knows what is right for you and your family, have a chat at genetics, you won’t be put under any pressure to take the test.
Hi,
thanks Ladies for sharing your thoughts with me and it is very helpful to have differing viewpoints. I am going to nag my clinic to start appointments for daughters, etc so they can learn how to check themselves, what to look for, lifestyle choices, etc.
I actually have 4 children and forgot my son can be affected too. The tricky thing is that they are very individual and what one would like to know, would scare the life out of one of the others. It is impossible to treat them differently once I get any information as they will clearly talk. Lulu I am the first person on my maternal side to ever get it but my Father’s Mother died of it. He was an only child. My daughters are all adult by the way and the eldest is 25 so Belinda the scanning from early 30s is getting closer for her.I was told they would not be seen until 10 years before I got it, so that would be 38 for her. Is that standard ? Like you I had decided that i would be tested before I go as I am currently the only person who could be tested, just working out when. Another option is to be tested, not tell them and then decide from the result. A negative result is easy, I tell them. A positive one, then that takes some thinking about. If just one had it, they might feel very isolated and angry, depending on which one it was. Crikey what a dilemna. Helen do I understand that you were tested yourself? If so do you mind me asking whether you have told your daughter the results? We have none of the other cancers, as far as I know (which is not a great deal) which is a slight relief.
Anyway thank you so much for sharing and I will plod along on Thursday and see what happens
Lily x
Hi again Lily, yes I think 10 years is standard, I was diagnosed with stage 4 bc aged 44…I’m still very well 6 years on. It’s thought I’d probably developed bc around my 40th birthday…I had lots of fiboadenomas at that time…so my daughter will be able to get genetic help aged 30. (I’ve now just turned 50 …we married at 19 and I had my daughter just after my 20th birthday!)
As your daughters are all adults now might they have already wondered about your family history even if they haven’t spoken to you about it? Perhaps they’ve discussed it amongst themselves? Good Luck whatever you decide to do…x
Ask me anything, I don’t mind and am happy to answer any questions that you have. I was diagnosed with bc at 41, my Onc actually suggested testing for a BRCA mutation because of my family history which is breast, ovarian and pancreatic cancer. I was found to have a mutation of the BRCA 2 gene. I have 2 sisters and a brother and they have all tested positive, thankfully they haven’t had cancer but they are very well looked after with screening, my sisters decided to have their ovaries removed as our particular mutation falls more into the ovarian rather than breast cluster. Once I found this out I also decided to have my ovaries removed, I just couldn’t live with the fear of ovarian cancer after going through bc. There are many mutations of the BRCA genes and they all carry their own risks. My particular mutation carries a high risk of male breast cancer so my brother has annual breast check ups as well as screening for prostate cancer. My daughter doesn’t yet know about the mutation, I don’t feel she is mature enough to handle the news though I will definateley tell her when the time is right. She will be offered screening when she is 30. The genetics clinic I attended were fantastic and told me that they would support me in telling her when the time comes. Of course no mother wants to give that kind of information to their child but I know she has a right to know and then she will be in a position to make choices when the time is right for her.
Hi,
I have had several chats with 2 of my girls, the middle one ends the conversation immediately so is clearly telling me she cannot handle this right now. Of the other two, my eldest said the other day, it would be awful knowing you had that coming. The youngest is very interested in medical matters but doesn’t seem to be thinking it might be her. We do talk a lot and they know about increased risk etc but have probably thought they can think about that somewhere in the future.I gave them all a leaflt about what to look for and about checking and it was never mentioned again. They have all been very upset about me getting it and being ill so there may be an element of them needing a bit of time to take all that in first.
Helen I agree about your daughter being too young. Trouble is with 4 children, my oldest needs to know but my youngest doesn’t really just yet. Thanks again for letting me understand your decision more fully. Belinda thanks, do you mean your daughter will get genetic testing at 30 if she wishes to? Very glad to hear you are still well and have read a lot of your posts on the forum. Still thinking!
Lily x
Hi Lily…yes my daughter will be offered testing at 30 and I know she is going to take up the offer especially as she has a very young baby and toddler…Take Care…Belinda…x
Hi, I suppose I may be the same age as your children, my mum has Brca1, found out at 57 after breast and ovarian cancer. My Mum being tested was the best thing that could ever happen as it has given me the knowledge to do something, meaning being tested! I get the results today in fact! I understand about it hanging over their heads but to be honest knowledge is power and something can be done if need be. Also, if you are Brca1 or 2 you may wish to think about having your ovaries out if this hasn’t been done already. I am 28 and although young to be having testing I want to ensure I am here in years to come for my daughter x
Hi,
well the genetics nurse was puzzled as she said someone who already has Bc cannot be referred. So it has to be one of my children who trigger any testing. Anyway she went through my particular case and said we are definitely not high risk and we don’t have enough for the girls to be referred either. This is rather infuriating as it is coming through a male line and quite a few had just one son, so a lack of females. So if the girls decide to ever get tested, the first thing they will want is my blood. At present the on ly thing available is that they can be screened from 40 if they go the GP and request it.
Feel more settled that I can’t do anything anyway and that we had too few cases for their requirements. So will see how things develop over the years. Thanks for your posts and hoping this finds you ok
Lily x
Lily, how puzzling, I can’t understand why the nurse said this…my blood was tested and I’m part of a big study group which is looking into genetic bc. This was all done at my request not my daughter’s. The geneticist I saw said it was just as important to look at the male line as well as the female line.
Take Care.
It’s such a personal thing isn’t it, these choices we are faced with. I haven’t had breast cancer, but because of my family history was tested, at my request, and have the brca2 gene. It took me ages to talk to my 3 daughters about it, but I felt I had to as I was having major surgery as a result. They are still very young, and would not be tested yet, but my almost 18 year old has said that she may go and talk to the clinic in a few years.
Good luck with your decisions.
I was tested for a BRCA mutation after bc so I can’t understand why your genetics nurse made the comment about you not being eligable for a referral! There is absolutley no reason why your blood can’t be taken, tested and kept in storage if necessary. I’m sorry but I don’t feel your genetics clinic have been very helpful or proactive.
I have brca2 gene, was dx with bc grade 3 at 32 in oct 07. Because my grandma and 3 of her sisters all died of bc at early ages they decided to test me. As i was positive they tested both my mum and dad, it is my dad who is the carrier. He has never had cancer and hopefully never will. My sister was also tested and she came back negative which is fantastic. As a preventative i made a decision to have bi-lateral masectomy and recon done in dec 08 as the chance of reacurrance was 50-80% then in feb 09 i had full hystrectomy and oopherectomy done.
I have 2 children girl and boy they know about the gene and will be tested when there 18 then its there decision as to what happens from there. They know there is a possibility of them having it, ive tried to make it as easy for them to understand so its not a shock for them when the time comes to be tested. I would rather my children know if they have the gene and do something about it rather than not know then if they get cancer and have to go through all the chemo radio. Its so hard you just want to try and protect them dont you. Sorry for rambling.
Hi,
thank you so much for your posts, which have given me a lot of information to think about. I suppose it offers me the coward’s way out, being told that I cannot start off this process. I have talked to all of them about it and they are all shying away from knowing in advance. I also received a letter today from the nurse at the clinic who said that from the family history my girls are of moderate risk compared to the rest of the population. She has said that if anyone else got it that would change things. I hope never. Not sure if I was clear, I would be tested and my blood is important in the process but I cannot be the first person referred for genetic testing as they know I already have it. She implied it was a financial decision so things might be different in other regions. I am hanging on to the fact that the youngest so far in our family was in their 40s, which gives us hopefully some time to dwell on it.
Wishing you all good results for your families
Lily
Hello Lily I remember you mentioning in another post some time ago that you were wondering about genetice testing. In our family 3 out of 4 sisters have [or had] bc. My eldest sister had hers in her 40s and died at 47. My youngest sister’s ductal cancer, diagnosed in Nov '07, was 4cm behind the nipple and she had a mastectomy and had lymph node involvement. [She’s the one who has just been discharged after spending 4mths in a psychiatric ward with severe depression.] My bc is/was lobular that started on the excision site of a fibroadenoma 50 odd years ago. Then last week I learned that a 1st [maternal] cousin - has just died from bc. None of us knew she had it but she must have had a mammogram when we got the bc diagnosis and kept it to herself - perhaps to save us worrying. It was a terrible shock. But her illness does seem to increase the risks for other females so maybe we all need to give genetic testing serious consideration.
None of the younger females have had blood tests but all have had mammograms and will keep a constant vigil. Genetic testing has been suggested to nieces in Canada [one of whom is a GP like her brother]but nobody has had it done. In the UK one niece cannot even have a mammogram until she’s 40 which is ridiculous. My sister agreed to let her medical file be seen by researchers looking at family history. I declined but gave full details relevant to bc. [I guess as a retired nurse teacher I’m more suspicious about opening all medical files willy nilly.] I don’t know whether my daughter will go for genetic tesing but she’s very conscious of cancer risks as her sister died of a brain tumour aged 14.
As you say Lily it’s a serious dilemma but the decision is out of our hands. One thing I do know is that my son will be keeping a gimlet eye on his beloved daughter [now 9yrs] for the rest of her live to make sure she understands all the risks. All the best to you now you’re back at work. And good wishes to you allxxxxxxxxxxxxxx
Hi Feistysister,
thanks for your post and really sorry to hear that there has been so much sadness in your family. My girls can’t be tested till they are 40 either. We had a few weeks of debating the topic but they seem to be happier with joining the screening programme early, rather than finding out for sure. So for now that is the plan, unless anything changes or better screening is offered at an earlier age. Hope things go well with your family
Lily x