Hello - I think I have come to this discussion rather late. I was told 2 years ago my breast cancer was oestrogen driven. I was 46 and told their was no risk of a familial link. I had surgery, Chemo and Radio. My sister and I were really more scared of ovarian cancer which our Mum died of suddenly 11 years ago. So we fought for screening for it and, after many hassles I have been tested genetically. Guess what - I have the BRACA 2 mutation and its probably what caused my Mum’s ovarian cancer. It has consequencies for us all and although my breast surgeon is helpful I now have to fight the long lists to get ovarian help. Also apparantly I will also have to fight to get screening more frequently after age 50. Cancer treatment is fast and effectively if you fit the mold but once outside it there seems to be very little support out there. Am I the only person who thinks this?
hi Staff
unfortunately like everything we have guidelines and not everybody will fit those guidelines but im glad you managed to get yoru testing… mine was a bit of a fluke too… mum had BC at 57 and her gran in her 60 (her mum had a hyst and ooph at 36 so we felt that she had maybe protected herself) i got bc at 37 and a new primary at 40 so with the FH we could be tested as there were 4 cancers covering 3 generations.
when the test was positive mum was tested and she was NEG… id gotten it from my dad with no FH of BC on his side in 5 generations.
it is hard if you have a small family or lots of males you dont see a typical pattern… there will always be exceptions to every rule.
in scotland our high risk or very high risk (eg gene carriers) women get more frequent mammograms… we do mammo 18 monthly in conjunction with the national breast screening programme.
if however you have had breast cancer you should get annual mammos for at least 5 years (we do it for 10 years).
Lulu x
Just thought I would add a quick post on here…I had high grade dcis aged 36 in 2006 had mx and now have invasive ductal cancer on other side , I am 41 now. I asked at my last mastectomy for the other breast to be taken but was refused and despite regular screening in between, I discovered my own 2nd cancer which was at stage 2 (grade 3) by the time it was discovered, I am now mid way through chemo. I was very angry they wouldnt do the double mx at the time I asked but they have now agreed to refer me for oopherectomy without the need for genetic testing, which they say will follow at some time as chances are cancer twice so young points to a gene mutation. Am happy about that as family complete and want to reduce chances of reoccurrence as much as poss. Dont know the family history at all on my fathers side as he died when very young and his family live elsewhere, there is no relationship there, but no history of cancer on mothers side at all. Good luck everyone keep pushing for testing and answers, knowledge is power they say!!
Hi all,
I had bc in 2000 age 33 with WLE chemo rads and Tamoxifen. Now have new primary other side picked up on screening.
Was never offered mastectomy previously but will have bilateral next month.
Was on UKFOCSS trial which has finished now and had one ovary removed this Feb. I have only just had genetics test as other family members tests were ok. I’m not sure that it will make a big difference as have big family history anyway.
Feeling a bit like a mutant.
Hope you are all dooing ok
Claire
Hi, my story is that my GP brought up the issue of family history and I was referred tot he genetics dept nearly two years with the questionnaire. They said I was at medium risk and put me on a mammogram program from 40 and said I needed someone with cancer in the family to be tested first. I could not get my only living relative who had breast cancer to do it (long story). I had a mammogram in May 2010 which didn’t pick up the cancer. I was then diagnosed with breast cancer in Feb 2011 and I am undergoing chemotherapy. I then could be tested because I had cancer and today they told me I have the BRCA2 gene mutation (took two months). I have decided to take out both breasts and the ovaries, I will see the specialists in the next few weeks when the details will be arranged.
I have many questions in my head after today’s news, in particular I’d like to know whether a BRCA2 gene means a higher chance of recurrence of the cancer I am being treated for. I know the risk of other primaries but don’t know if there is a higher risk of dying of the one I’ve already got.
hi Barbwill
sorry to hear your a fellow BRCA 2 mutant.
to answer your question… having the gene does not make cancer more aggressive or more likely to recur than somebody without the gene with the same type of cancer… there was a recent research paper posted about triple negative cancer with the gene who actually have less chance of recurrence.
good luck with your future ops… i had a hyst and ovaries out in sept and planning mastectomies next year.
Lulu xxx