Hi,
I did post on this section a while ago and had some good advice so hoping you ladies are able to help again. At the time I was wondering whether to find out if I had one of the known BC mutations as I have 3 grown up daughters. In the end the girls said they did not want to know and afterwards I got turned down for the genetic counselling as they said I had insufficient relatives with BC. This is despite it coming from my father’s side with virtually no females on that line.
I thought I had put that nagging thought to bed for a while and then received a letter from my GP saying I was considered suitable for a trial of 15,000 women and requesting that I take part. It is important as they are trying to predict people who in the future may get BC so they can try to take action before it appears. So it could help more than my relatives. However they ask you to say at the outset whether you want to know if they discover anything that could affect your health, I am guessing BRCA 1 or 2.So I am back to the start on whether I want to know or not. I have not told the girls so could keep it quiet. BUT how could I keep it quiet if they contacted me with something? They say you may hear years later for some tests. Any thoughts please?
Lily
Hi Lily,
I have just heard I am positive for the BRCA1 gene. I am glad I know for me. I have had 2 mastectomies anyway for 2 separate bc episodes and waiting for a date to have my ovaries out once I have finished chemo. I am 56 and don’t need my boobs or my ovaries any more, they have served me well in the past. However it is more difficult for my niece who is only 16 and needs them all. However she wants to know her chances. With medical science advancing there should soon be some sort of prevention and that it when it all becomes interesting, I feel. If one has one of the genes there is an 80% chance of developing bc in ones life time, but when ? I feel relay sorry for the younger ones out there. Our sons can also pass the gene onto their daughters.
I don’t know if my thoughts are any help to you.
Best of luck in what ever you chose
Maria
I don’t think you should pursue this. Your daughters have told you “no”, they don’t want to know-all three of them! Had at least one wanted to know, then it might be worth considering-but when the feedback is 100% in favour of leaving alone-then why consider doing otherwise?
I was diagnosed with BRCA2 several years ago-as was my daughter. However, my son opted not to be tested-and I have respected this decision completely. I have never attempted to change his mind or influence him in any way.
You asked “how could I keep quiet?” Well, I don’t know that you could-or should. I think honesty with our families is paramount-and if you “omit/forget” to tell them something such as this, they may find it difficult to trust you again in the future.
So-in view of your daughters’ views, I would not get involved. There will be no pressure for you to do so.In addition, you have already been refused genetic testing-which is also interesting. Normally they err on the side of caution, and if there is even a slight chance that a fmily could be affected, they will at least begin the process. This involves speaking to a geneticist and counsellor, who will assess if there is a risk, and if you are emotionally stable enough to deal with the potential impact that a positive diagnosis would have on your life. Finally, I think if this new study were told that your daughters didn’t want to know, they would refuse to continue.
Hi Lily,
I think I have just joined the same study and I have said that I do want to know. However, I’m in a very different situation to you as I was offered and took up genetic testing and no mutation was found. This study was suggested to me by my genetic counsellor on the basis that there is still a lot of research to be done on this and probably other relevant genes to be “found”. In case it is helpful to you I will give you the way I reasoned my original decision.
I went ahead with the testing because it was what I wanted to do. My genetic counsellor was very clear with me that “doing it for the benefit of others” was not a good plan unless I also wanted to know myself. That was never a problem for me because once I knew that there was a possibility I wanted to know. She was also clear that everyone potentially affected had a right to decide what if anything they wanted to know. I would have gone ahead with testing regardless of what any other family members did or did not want to know, but their choices did affect what I did with the information.
Before I saw the genetic counsellor I asked each of my close family whether or not they wanted to know a) if I was offered genetic testing b) if so what I decided to do c) the result if I went ahead with testing. In the event they all said yes to all three. My sister actually said “yes, please” to (a) and that while she would like to know the others, she felt that was entirely down to what I wanted to tell people.
With regard to people in the wider family who might have had an interest, I decided to wait until I had the result. Had it been positive I would have contacted them, said that there was a possibility of a mutation and asked would they want to know any result. As it stands if any of them actually ask I will tell them I had testing and nothing was found.
So I guess the first question is - do YOU want to know? If you don’t then as your daughters say they don’t want to know then you don’t need to worry and you can just be in the study and say you don’t want to be contacted. If you do, then you have to consider how you would feel if something was found and you knew but they have chosen not to. I would have been fine about that, if they chose not to know I would have respected it without getting myself into a state about it, but it is a very individual thing.
As I remember, the study won’t just contact you and give you a result but you can opt to be contacted to have a discussion about what you might want to know. Having said that, if you get contacted then you know they have found something! But it does suggest that there will be some support around it.
When I was thinking about whether or not to ask for the referral to the genetics service I had a discussion about it with my bcn and that discussion clarified the issues for me. I have a very good relationship with her and it helped to discuss it with someone who knows a bit about how I think and approach things but is not family or close friend.
Incidently, I don’t think that the study would refuse to continue if they knew your daughters don’t want to know. They will work on the basis that if you want to know they will tell you and what you do with the information is up to you and your family although I suspect that the person who gave you any results would have a discussion with you about this.
Sorry this is so long! Feel free to pm me if you want to ask anything else about how I made my decisions.
Good luck,
Eliza xx
oops, should add that when she said about the others having a right to decide what they wanted to know, that was on the basis that I was happy to tell them!
Sorry Eliza-I didn’t phrase it well! I think the combination of Lily having had cancer, the fact that she has insufficient family history as to suspect that she would have a gene mutation, added in to the fact that her immediate family have already expressed that they don’t want to know-would give the research team suffiient grounds to be uncomfortable about proceeding. All very good and valid reasons to realise that this is not a particularly wise route for Lily. The fact that she still worries about thre being a genetic base despite reassurances, is a worry in itself. Granted there are likely to be more genes discoverd in due course-but that holds true with many illnesses in life.I know my initial consultations with genetics in some way actually leaned towards dissuading me from going ahead-on the grounds that once information has been learned, it can’t be ignored/unlearned!
Dear All
If this is the SEARCH study then I too am on it. I was contacted by letter and it simply said “we have identified that your family history is significant and you may want to discuss this with your GP and ask for referral to a Family Cancer Centre”. It was not at all explicit, other than to suggest a medical conversation could be beneficial for me or other family members concerned about BC. I’m not concerned personally, what will be will be and I certainly will not consider pre-emptive surgery so it’s all academic. Of course it raises the dilemma of whether to tell relatives and what I decided to do was simply say that there seems to be a lot of bc in our family and ask whether they’d ever asked their doctor about it. The reply is always “No, why have you?” to which I reply “No, I never felt personally at risk - always thought my healthy lifestyle had me covered”. Don’t know if anyone will see that as sufficient reason to speak to a Doctor but if they are worried then they might.
Love
Jane x
Hi,
thank you so much for sharing some very differing views with me and I appreciate them all as it helps my own thoughts to fall into order.
Marial - I am sorry to hear that you have the gene but I am glad you wanted to know and that you see this as a way to gain more control through knowledge of what you are up against. If it was just me to consider, I would definitely be of the same opinion and want to know. From what you have said am I right in thinking that you decided to be tested after the second time and not the first one? That seems a middle of the road decision I could think over.
ElaineD a really valid strong point too. I talked to my friend as we both have 4 children and we decided that we would have been too scared to have 4 if we knew we were at risk and would not have had the pleasure of our last ones, if we had known we had the gene. I was actually really pleased that all 3 girls thought the same as it would be impossible to tell one and the others not find out, so I had asked for a group decision. I left my son out as too young to need to know yet I felt.I am or try to be completely honest with the family and talk about Bc and the added (supposed) advantage of having children early, need to self examine, have mammos from 40, etc, and exercise and diet issues that are talked about as helping. In our area I was sent to a genetics nurse first who charted the family and said not enough people with Bc and no ovarian. My point is that there are so few females on that line that the % is actually quite high. They can’t see past their formula and maybe they are right.
Eliza thank you, that gave me a really good insight into the next stage and was really informative in my current position.This would be my second trial as I was/am on the Tact2 trial for my chemo but my research nurse has left now so a bit lost for a close chat.Do I want to know? Good point!!! I realise from reading your post that I don’t know the answer to this and should! I can’t quite separate myself from the fact that I got exactly the same type of cancer at the same age as my paternal grandmother. No-one at all on my mother’s side. Doc said a very strong link comes down the fathers’ side and I can’t forget him saying that. Also found I have Jewish descendents way back but don’t think they were Ashkenazi from the names!
Jane - yes that is the trial, if from Cambridge, it has just got to our area. That was really helpful to know what any response would be.
Thank you all for replying. As usual I am dithering and telling myself if I knew the result I would know what my decision would be about whether to know or not. How stupid is that? I have sent the initial letter back ticking ‘yes I will take part, but I can pull out at any time’. I have not told the girls about it at all and I guess I am just putting off the decision until they contact me. What a chicken cluck cluck
Thanks ladies
Lily x
Just one other brief point-as a rough rule of thumb, genetic cancer tends to strike each successive generation about 10 years earlier-so the fact that you were the same age as your gran, actually suggests the cancer wasn’t genetic-had you been about 10 years younger, then, this would have been a good indication that it could be genetic.
Please do take longer to make a decision-it sounds as if you are far from convinced, and it is a traumatic, long drawn out process. Good luck!
Hi All
It is the same study from Cambridge Epidemiology - nice little lighthouse logo! I had another thought about what we know and what we don’t know. The thing is once someone starts to say something the not knowing is almost worse, but keeping something to yourself if others don’t want to know is just as hard. I suppose it’s quite a personal thing but the real question for me is “would it change my behaviour?” and the answer is no - I’ve already had an mx and can’t come to terms with that so I know that for me living with the cure is as just as bad as the prospect of dying with cancer. Should we warn others? Is it possible to warn without causing our families to live in fear? Would their lives be better? Quality of life is much more important than length of life to me. Like you say - we all probably have lots of dodgy genes for all kinds of illnesses plus anybody can just be unlucky and have an accident or get something environmentally etc.
Love to all
Jane x
Yes, it is the same study I’m in, with lighthouse logo.
Jane, I think your 'would it change…" point is good. For me it was the fact that I couldn’t cope with not knowing that predominated and if necessary I could have kept it to myself. My sister knows the risk but she had already thought of it herself so she is grateful that she can get earlier screening.
Lily, I think that the fact that you can pull out of the study is important. Also the fact that you can be in the study so get the feel good factor from doing your bit, but it isn’t necessarily part of the study that they will contact any of us with information. And if you are not going to hear from them then there is no need to tell your daughters as it is just the same as all the other studies that collect information but don’t contact individuals. I think it is perfectly valid to say that you’ll ask them to let you know and make the decision if and when it happens - especially as it may well never happen or be in 10/15/20 years time.
Eliza xx
Oh my,
you have all sent my thoughts bouncing round in circles again. As I see it if I am so easily swayed by you lovely ladies, it means I am not actually ready to make a decision that I cannot take back once given the facts! Hmmm a lot more thinking required. I absolutely could not keep anything secret that was so important to my daughters’lives, I know that for sure.I would behave differently because I always have to share big things with someone but mostly because I love them so much .
Keep bouncing ideas at me it really helps, if only to understand that i am not ready to say yes or no yet.
Take care
Lily x
Hi Lily,
It is a difficult decision for you and, of course, none of us can or should try to, advise you what to do because we are not you! It isn’t even appropriate to say “if I were you I’d …” because we’re not you. What we can do is say “this is what I would do in the circumstances” and explain how we got there.
Given that you say that you wouldn’t be able to keep from telling your daughters if something was found and that they say they don’t want to hear it, that does get you a bit further. As I see it your options are
- Don’t volunteer for the Study at all
- Volunteer for the Study and tick the I don’t want anyone to contact me box
- Volunteer, tick the I’d like you to contact me if you find anything box. If they did contact you you would then have to decide if you want to follow up on it or not. From what Jane says it sounds fairly low key if they do contact you.
You could phone the study nurse for a discussion about how and when they might contact you. She is really nice - I spoke to her when my GP wanted to charge me for taking the blood sample and she dealt with it in a friendly and efficient way.
Eliza xx
Hi,
thanks for the private messages, I have replied. Eliza you have summed my options up nicely there. I have eliminated number one so far.
Lily
sorry im coming to this a bit late but just thought id give my tuppence worth.
i think you really have to do what is right for you, what would you do if you discovered you had a gene? if you would just do the same as you are now then knowing or not knowing wouldnt make a difference.
but if you would have prophylactic surgery then you may want to consider the trial… do also bear in mind that only 5% of breast cancers are genetic and the majority of people with a strong family history do still come back with no gene change being found.
so you could enter the trial and not be any further forward than you are today.
not wanting to find out wont make any potential gene change go away, so your family would still be considered at an increased risk and you daughters would still be eligible for appropriate screening based on your family history.
if you were found to have a gene they would be eligible for testing if they wanted it… but it would be down to each individual child to decide whether to proceed or not.
in my clinic if somebody is a brca 1 or 2 carrier or have a 50% risk of being a carrier eg daughter, mother or sister of a carrier they would be eligible for annual MRI screening up till age 50, which is a bit more sensitive as a screening tool particularly in younger women.
not sure if this is being implemented in england or not yet.
my 19 year old daughter and 16 year old son know i have the BRCA2 and that they both have a 50% chance of inheriting it… my daughter is now at an age when she could be tested but she is too busy being a teenager to worry about it just now but will be eligible for screening from 25… if she chooses to have the gene test and is found to be negative then she wouldnt need screening until she is 50 through the national screening programme.
good luck with your decision Lily
love lulu xx
Hi,
thanks Lulu that was really informative. I have said yes and I am waiting for them to contact me. By not telling anyone in the family, I am hoping I can change my mind at any time. That is when I make my mind up in the first place!
Some decisions are double edged swords and can’t be taken lightly. I wish you a happy ending for your 2 when they are tested one day. Mine are too busy having fun too!
Lily
Hi,
arggghhhh the pack has arrived complete with tubes for blood, needles and a huge huge form to complete. Plus the contraversial do I want to know or not letter to fill in. Thought I might have a chat to the nurse provided and see what she says. Does anyone know if I could say I don’t want the results now but still have them available if I want to know or the girls do in the future?
Still dithering!
Lily x
I don’t know, Lily, but the study nurse was really helpful when I needed to contact her. You can also take a bit of time before filling in the form.
Eliza xx