Hi all, I have TN and I understood that being “younger” (under 50) meant that I could get genetic testing despite lack of knowledge about my family history. Now they want me to fill in a questionnaire. I have my mother doing her best to answer the questions but I can’t help wondering if this is for their research or if they are trying to screen me out and not offer me the test. I have tried to ring them but the number on the letter is wrong. Anyone have experience?
Bump.
Hi Cressida -
i asked my oncologist about this as i have twin girls (only 8) and i am TN and 46.
He said that given my family history (no BC or even cancer in my family at all as far as we can go back- (how unlucky was i!)) that they wouldnt test for any genetics…
And i am covered by private health care, so it’s not as if there is a budget issue.
Hope you’re ok.
Mxxxx
Oooh, this makes me ssssoooooooo angry!!! I am like one of those cartoon characters with steam coming out their ears!
Cressida- I think it is pretty standard to have to fill in those questionnaires so you should not assume that they are trying to do anything other than get a sense of your family history.
I am posting the links (they have been on threads before) for studies which are showing that women under 50 with a triple negtaive b/c have a 1 in 5 chance of having a brca1 mutation. As I understand it, because most genetic units operate a rule of thumb that you have a 20 per cent chance of having an inherited mutation to be eligible for genetic testing, women like us should have testing- at least that is the argument.
I was seen by Gentics a year after my first diagnosis with a triple negative b/c at aged 40. My situation is that I was not eligible for testing(under NICE guidelines)- my maternal aunt and grandmother developed breast cancer. It was post-menopausal so low risk.My paternal grandmother died of breast cancer, an aunt of an unknown cancer and my great grandmother ovarian cancer - all pre 50. I therefore took part in the Genetics of Familial Breast Cancer Study and learned I had a brca 1 mutation. I have just finished treatment for a second breast cancer after a tumour was found in the tissue removed from my breast after bilateral mastecomies (intended to be risk reducing).
The expereinces of women on the forum suggest practice varies locally. I went to see my MP as I feel so strongly about this and I have just contacted Breakthrough for Breast Cancer (BCC is not a stakeholder) as they are stakeholders on the NICE guidelines which are beingchanged as we speak.
Here is the link:
info.cancerresearchuk.org/news/archive/pressrelease/2012-02-14-more-breast-cancer-tested-BRCA1-gene
nature.com/bjc/journal/v106/n6/full/bjc201231a.html
If you are concerned about your family history of breast cancer, are under 50 and have a triple negative b/c, I would urge you to ask for a genetic test- if you want this.
Rattles x
Snap I’m in the same boat. I was dx in march2012 aged 41, onlhost story in my family is grandad died of leukemeia and mum cousin had dcissurge consultant has said no need for testing, but my argument isI the family history has to start somewhere!! Anyway I have pushed and pushed as I have to young girls and as you say it is reported that beng tn and younger you are at higher risk of the gene. Well eventually they have given in, I have a meeting at the end of the month, but as you say I have to fill in a lot of paperwork about family history…ill let you know how I get on…keep hassling
Thanks Ladies - I looked on the website of the genetics testing centre that sent me the letter and they do have it in the criterea that being under 50 and TN means I am eligible. So hopefully the form is just standard nonsense to annoy me rather than to screen me. Most of it will be blank when they get it anyway. Lots of don’t knows. Thanks, especially to Rattles and Chatty Katty, who have helped me before 
. And Mandy - looks like you need to make some fuss and get tested. xxx
Well, I mean, only if that is what you want.
Posting gremlins have swapped our posts…
Ummm - thanks. Yes I owe it to my daughters…xxxx
Hi Cress
i think you already have your answer but my experience was similar no sig family history but as I’m young (29) and triple negative that was the only criteria required to qualify me for testing. They did send me a questionaire to fill in which didn’t reveal a lot really but I guess it’s one of thode things that has to be done!
Hope this helps!
Xx
Hi Cressida Just wanted to back up what Rattles has posted. GPs etc should follow the NICE GUIDELINES. My sister was dx at age 27, approx 11 years ago, with ovarian cancer. I had a maternal aunt who died of bc at age 51 and a grandfather who died at age 64 of prostrate cancer. 11 years ago we asked if other members of the family needed genetic testing and we were advised no as we did not meet the NICE criteria and we were not deemed to have a significant risk of genetic mutation. Fast forward 11 years and I have been diagosed with Breast Cancer at age 43. it is ER/PR+ . I have now undergone genetic testing, and have tested negative for BRAC1/2. I did have to fill out a questionnaire about family history. My understanding on this is in order for the genetics team to “score” your risk, which is based on factors, such as your dx, age at dx and your family history - whether you have first degree relatives dx with breast, ovarian or prostrate cancer etc. if you score high enough on this system (which has a name but can’t remember it off the top of my head!) you are then put forwad for genetic testing. In my case, I was dx 13th July, did not see a genetics counsellor until 1st November, when I had the dna bloodtest and I did not get results back until end December. so it can take a few months to get the test done and results back. Our family has just had “bad luck” re: cancer! As I understand, supporting supachick’s poat, being young and dx with TNBC should be sufficient without extensive family history or first degree relatives, to warrant testing. Good luck with it and with your treatement. x
Also meant to add I was told it was highly unlikely I had a BRCA mutation as I was not TN!
I think the questionnaire is something you have to do regardless, my father had to fill one in, even though I had tested positive for BRCA 1 mutation (so it was a 50% chance that it came from him), and his sister did, even after he was tested positive. (Being siblings they have exactly the same family history but were in different parts of the country so that may be why)
Hi Everyone,
I found this:
You can put in some general info and it will tell you how likely it is that your cancer is genetic. Mine came up with slightly increased chance of BRCA1 gene mutation, So after all my treatment I will ask for a test.
Hope it helps you decide whether to ask too
Alison
Hi just tried that link, I must be stupid, but where is the box they ask you to tick re terms and conditions, as when I press next it asks me to tick that box? There is no box!!
Kat - the screen where you are getting the message has a scroll bar at the side - get rid of the message and scroll down. I did look at this page in the past, Cucumber, but I lack knowlededge about family history and I really want the test. I have done quite a bit of work on statistics and I don’t want a general statisitical risk, even if I could get one. Large statistical studies are always years out of date due to the volume of data involved and TN is cutting edge stuff, so it’s the test for me if at all possible. Thanks anyway. Cress, x
Oh, and I just looked at it again - it has nothing about TN and asks if you are under 40 not 50 so now I am sure it is out of date and may give people false reassurance. I have tried to find out when it was last updated without real success and I have better things to do than spend all day trying to find out, but the last paper review that I could find was dated 2006. If it was updated then (and there is no evidence that it was) they would still probably have used data from about 6 years before that. Happy to hear if any of you know how up to date it actually is. Sorry if I seem to be having a bit of a rant, I don’t mean to.
Hi Cressida,
The NICE guidelines on familial breast cancer are currently under review. New guidlelines will be coming out later this year. In the mean time, the curent guidelines areunlikely to incorporate the findings.
My contact with women via BCC is that the experience of women varies from area to area. Certaonly some women seem to be being offered genetic testing on the basis that they are under 50 and have a triple negative breast cancer, but others dont.
My impression is that no-one is disputing the compelling evidence from the study in the link I posted. If I were you, I would simply print that off and take it with you to your appointment with genetics.
It is enough to drive anyone to rant!
Please pm me if you think I can be of any help.
Rattles
Thanks Rattles - I would change my name to Grumpy but that name is taken. x
Cressida
dont panic about the questionnaire everybody who attends gentics gets one regardless why your seeing them… its just a formality as some people have a family history as well as being TNBC too. Just complete what you can… some people are adopted so have no info at all.
there was two research studies early last year indicating that TNBC under 50 had a 20% likelihood of being BRCA1 so last summer the ICR amended its criteria for testing for TNBC from under 40 to TNBC under 50… however not everywhere is on the ball but if you take the ICR criteria they will probably consider it.
http://www.icr.ac.uk/research/team\_leaders/Rahman\_Nazneen/Rahman\_Nazneen\_Protocols/Protocols/22778.pdf
http://www.springerlink.com/content/c7nw54057522n876/
http://www.nature.com/bjc/journal/v106/n6/abs/bjc201231a.html
all units should offer genetic testing women with TNBC under 40 as there is oodles of research to support this.
for families with 3 cases of BC or OC or an indiviual with bilateral BC at any age you can be tested through a research trial called the breast and ovarian cancer susceptability study.
hope this helps