Hello, first post.
I’m 19 and have an appointment with the genetics people later this month.
Always knew I had a strong family history of breast cancer but since I’ve started delving a bit more is much worse than I thought. Around 10 relatives, including males, disagnosed in their 40s on my mothers side of the family going back 4 generations.
Finding this out has been pretty emotional so far & I just feel like crying whenever I think about it.
I just want to know what to expect when I have my appointment, will it just be a chat, outlining options etc or will they dive at me with a needle wanting my genes!
My mother wasn’t too keen on me doing this, she had breast cancer in her early 40s when I was young so I’ve seen it all first hand. She then had a reoccurance, she has the brca2 gene so I think that makes it easier to find in me?
But she was talking about how it could affect life insurance in the future, is this true?
Just any advice would be great. Sorry for rambling
Hi Arches
Welcome to the forums where I am sure you will receive valuable support and information from your fellow users, in addition, here is the link to a booklet published by Breast Cancer Care which may help you to understand more about familial breast cancer and contains some information about what to expect at your appointment, you can read it online or download and print a copy:
breastcancercare.org.uk/docs/bc_in_families__final_12_june_08_layout_1_0.pdf
Also, please feel free to call our team of specialist nurses on the helpline for further support and information on 0808 800 6000, Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Hi
I am 39 and have experienced 3 primary cancers(3 kinds totally unrelated to each other)unfortunate I know.Anyway due to this I have spoken with the genetics team at my local genetic clinic.It will just be a chat,at the most blood taken(dont worry)Your mother having the brca2 gene does increase your chances of having the gene also,however let me stress this does not mean in anyway that you will develop cancer now or in the future,it just means your chances of having it are higher than the average person.I personally was tested for this(results were negative,they are still working on what genetic faults I may be carrying)If you are found to be carrying the brca2 gene,it will mean that you will have the opportunity to be vigilant about regular checks and should if ever you face a possible scare,the chances are it will be caught so early that you would be a full recovery.At your age,personally I feel your chances are even slimmer,however and I dont want to worry you over nothing, I personally would insist on regular checks just for piece of mind.Given your family’s background,it will be important to take along all details of these relatives in question,i.e their dates of birth,exact type/grade of cancer,outcome,survival etc as the genetics team will need this.With regards to life insurance,should you be carrying the brca2 gene,yes it will affect it,however at your age you shouldn’t even be thinking of this,unless of course you have children or plan to very soon,if I was you and this really worried me,I wouldn’t go for genetic testing until i had insurance in place,however you would need to advise them of all necessary medical information they ask of you,i.e family background,also if your GP has referred you to the genetics team,this will be on your medical records and could reflect on any policy,not 100% sure on correct way forward for this.I think your mother is possibly worried that you may be told you are carrying the gene and that is why she doesn’t want you to go ahead,she wants to protect you,however sometimes in life knowledge is power.I went for testing as I have a 12 year old son and I want to make sure that he is not at risk,if there is something that possibly could affect him later in life,I want to ensure that he has the power and knowledge(when he is a little older of course)to ensure his future health and life.
Good Luck
Your appointment you will find very interesting,it is a very complex area of the medical world.You wont get told any bad news at all,they just want information from you and maybe a little blood.
xx
Hello Arches
Please dont be sorry for rambling! At your age what you have had to come to terms with is enough to make anyone ramble!! I went through what you are going through in my late 30s and found it very upsetting.
Everything Cyprus said is right about the appointment.
It involves “Counselling” as well as gaining info, so they wont tell you any bad news, though they may outline risk factors which might affect you. They need to feel that you are prepared for what is involved. They may even not take blood if they feel you arent ready for what the results may mean to you, ie everyone has the tests hoping to know they are not carrying the gene, but no matter how much you claim you are prepared for the worst, it still hits you like a tonne of bricks!!
Like Cyprus says, take all the details you can of your relatives.
As for life insurance. Yes it will affect you, but with your family history its probably already too late. There is a ban on using gene test info against you at the moment, but that may change, but you will still have to supply info on your parents, siblings etc, so that will go against you already. My view at the time, was I already pay higher premiums so what difference does a gene test make. But you will have to decide for yourself. I valued knowing my risk rather than worrying how much money my hubby would get if I died.
I also wanted to “get into the system” - on the breast/ovary consultants’ books so that if I had any worriesome lumps/bumps I could ring her up and go very quickly rather than awaiting a GP referral. I believe you dont have to have the gene test for this either, you can be on their books, and monitored, screened etc as a high risk person based on your family history.
The genetics appointment will cover all these things, and you should have more than one appointment, and they should only go at a pace that suits you. They should give YOU all the info you want to make your own decisions; it shouldnt be about rushing you, or making you do anything you are not ready for.
Good luck, and ramble here as often as you like!!
Jane
Hi Arches
I have been diagnosed with breast cancer and have always known that I’ve got a strong family history. My cousin wanted the test doing as she’s now 46 and concerned for herself and her two daughters (26 and 20) so I had the test done and I’m BRCA2. I’ve also have secondaries.
There are obviously implications for all members of your family and as cyprus says it can increase your chances of getting cancer but you may also not carry the gene.
There are also implications for my son (because of the prostate risk), he’s now 21 but my counsellor said that he’s still too young to think about having the test done (unless he wants to). He’s aware that I have the gene and that he possibly could but I was told that by the time he is in the ‘risk’ age who knows what developments will have been made.
I think there have been new laws on genetic testing and insurance companies but don’t know enough to actually tell you.
Once someone has been tested positive for the gene they can go exactly to the grid on your DNA to see whether or not you carry the gene.
My cousin, although worried that she might have the gene, also said that atleast she knows now and can actively do something should she have it.
Good luck.
Pinkdove
Hi Arches
I have just this minute completed filling out the form for the genetic counselling nurse. My son had cancer as a baby, I had BC and so did my mother and three other children had cancer. So, I guess there is a strong genetic link. I was worried about the effect it might have on my son to find out he may have more cancer to expect but he was so philosophical about it saying that whatever it finds is not going to change whether he gets cancer or not. I agree that knowledge is power and I want to know so if necessary, I can find out about it. Don’t know about the insurance side of things - would be interesting to know from anyone how it affects those tested.
Hi Arches
I have had genetic counselling and testing and this year I have had risk reducing surgery.
Just before my surgery I moved house and re-mortgaged so I needed new insurance. I was already booked for my surgery and despite this, and giving my family history of cancer and heart disease, my premiums did not increase. My friend however re-mortgaged at the same time as me and her premiums rocketed because of her obesity. I was told that a previous diagnosis would have increased my premium but as I was taking steps to prolong my life I would not be penalised. I am not sure if different companies vary so may be worth shopping around when the time comes.
I hope this helps, and good luck with genetics.
Jackie
Hello again
Sorry I didn’t reply before, life’s a bit busy. Had my appointment yesterday, the lady was lovely and I asked all the questions I wanted too. She said as I wasn’t sure then that meant I wasn’t ready and that if I was found to have the gene screening wouldn’t begin until my 30s anyway.
So I’ve decided to wait, doesn’t seem much point in knowing when I’m young and should be enjoying life and I don;t want this hanging over me. I will want to know eventually, maybe when I’m about 25 or so, before I have children. But for now I’ll just be breast aware.
Thanks for telling me your stories, I felt much calmer after posting here. Good luck to you all 
hi arches
im 21 and had genetic testing at the age of 20
its a big decision but i do not regret it
me and my sister got tested together- only me having the gene
i have decided 2 have a risk reducing op- i went 4 the expanders
i have had them fitted for abt a month now
if u have any questions feel free 2 ask me
xx