Hi all,
I was diagnosed in 2010 with Stage 2 ILC and high grade DCIS.I had adjuvent chemo 3x FEC and 3 TAX i then had a WLE and lymph node dclearance of which 3/11 were infected. did not have good margins so had mx. then had 25 sessions of rads. am now on tamoxifen. am er+++ and pr +++
What i am asking about is genetic testing. did not really think about it but have found out that my sister had gone to her gp and has now been accepted for gentic testing on 17 Aug. So now it really has got me thinking. On my dads side i haven’t really investigated the deaths of family but i think it has been more heart problems rather than anything else. on my mums side i don’t have any history as she was adopted. There is no contact with her biological mother as my mum was told by her birth mother that she wish she had drowned my mum like you drown cats! I think her birth father died of lung cancer but again am unsure.
I think because my sister has got an appt to go for testing am now wondering should i and how do i get the ball rolling.
Thanks
BPW2Bxxx
Hi I think that is a good reason for you to push for this as your sister has been told its a good idea, I think it would put your mind at rest if nothing else although take into thought that it is only 15 % of all BC that are genetic with the BRCA 1 & 2
All the best keep us posted
Mekala x
Hi. They usually need a very positive case history before they test as it is so expensive. However, i had no info on half my family tree. Therefore i argued that there could be a positive history and it was not my fault i did not know and could do nothing about it! So, similar to your gaps. Anyway, they listened and tested me. I do not carry the gene but am glad i know for my children. If you do decide to go for it, hope this helps.
My consultant made the referral
Sadie Xx Xx
I’m the same, a lot of family history missing on my Fathers side, I know my Paternal Grandmother died of BC.
I know we had some Aunts on Maternal side with BC.
But as my Grandparents on my Maternal side both died unnaturally theres a huge gap of knowledge as to those before them as all their childeren including my Mum were so young.
I’ll be pushing, with the aim that if I am, then I can make a more informed decision regarding whether to have an elective MX.
I went through genetic testing too.They told me that they only test the ones with a strong family history of breast cancer/ovarian or prostate and that only 5% of those actually result in being BRCA1/2.
If I were you I would push for testing as your family tree is unclear.It will give you peace of mind.
Good Luck
Tracy
xx
I was considered to have a ‘poor’ history as my mother who had breast cancer In her late 20’s was adopted. My oncologist referred me nonetheless and to our mutual surprise I was deemed to be high risk and offered the test. I’m now awaiting the results. Don’t give up hope, of you want to be tested then push for it. I was surprised that the cancers in my fathers side of the family were considered as well. Xx
Hi BPwtb
i think the GP will be referring your sis for a genetic assessment… this is not the same as genetic testing… its not up to the GP to arrange testing…
its unlikely your sister will get a gene test as currently in the UK they only test affected people unless in very extreme situations.
however your sister is probably eligible for early screening if you are under 40, so its more likely she will be offered annual mammograms from age 40 or perhaps earlier depending on what age you were when you were diagnosed.
its actually much less than 15% of BCs that are caused by faulty genes and nearer to 5%.
we do not normally test if you do not know your history and we have lots of people in this situation who have lost contact with their family or are adopted… even at age 20 a diagnosis of breast cancer has about a 70% chance of NOT being genetic.
however all that said… i was only tested because id had it twice and my mum had also had it and that gave us enough points and although i tested positive for brca 2 it was from my dads side with no breast cancer in 5 generations except me.
hopefully one day it will be much quicker and cheaper option available to more women… currently it costs around £2000-£3000 and take about 4 to 6 months for a full analysis.
i would always suggest asking for a referral to genetics rather than taking your onc/gp/ bs word for things as they arent the experts in all things genetic…
my onc said it was a waste of time me being referred as i wouldnt have the gene my genetic nurse took great delight informing him he was wrong!
there is also a research trial which tests for the main brca 1 and 2 changes its available for families where there is 3 breast cancers or where the person being tested has had bilateral BC… the person tested must have an invasive tumour rather than DCIS alone.
good luck girlies i hope you all get some answers.
Love Lulu xxx