Should I be tested?

Just wondering of anyone could offer some advice? Am 28 was 27 when diagnosed with invasive ductal cancer and DCIS. Am on tamoxifen and just started zolodex am now wondering if I should ask to be tested for BRCA genes and even if they would test me given I have no family history. I want to know if I have the gene so I know what I’m potentially dealing with. I would happily have a double mast if I knew it would reduce my risk even further


Hi Butterfly,
In terms of any family history, is there any family history at all? Could be in father as well as mother’s family?
My understanding is that you wouldnt be eligible for testing without a significant family history and there is a crtieria against which risk is measured. So for example, I wasnt eligible for testing even though both my maternal aunt and grandmother had breast cancer because they both developed it after they went through the menopause. In the end, I found I had inherited a brca1 mutation, but from my father whose mother, sister and grandmother all died of either breast or ovarian cancer.
Lulu is very knowledgeable in this area and can direct you where you can find the criteria that is used to establish significant risk but if you look through some of the old threads in this discussion forum, you would come across it.
I would suggest if you have any worries about testing, speak to your GP.
Hope this helps a bit.

Hi Butterfly
im the Lulu that Rattles mentioned… firstly just to try and reassure you… most BC is not genetic only around 5% carry a brca1 or 2 mutation. Younger onset breast cancer is more likely to be genetic than older onset breast cancer when you compare the age of diagnosis… brca carriers tend to be younger… however most women who are diagnosed at a young age are not genetic… eg if you compare everybody who developed BC at young age a higher number would not carry any gene mutation… so basically although the incidence of genetic cancer is higher younger the diagnosis your still more likely not to be genetic.
in terms of being tested then this is unlikely if you are a single family member with breast or ovarian cancer, which is hormone receptive, if there were other members in your family with associated cancer or if other associated cancers develop in the future it may be possible to test you.
what you can do however is arequest a referral to genetic s to discuss this… as even though wouldnt likely fit the criteria for testing your early age at diagnosis is likely to mean that you family can have enhanced screening… this is usually a mammogram annually between 30-40 although some may do it earlier for your sisters, daughters, mother or paternal aunts… if they are within this age group.

take care
Lulu xx

Hi, I have come on here with a query relating to this so was very happy to see someone had already started the comments off. I will explain my situation and would appreciate some words of advice/experience. I am 32 and was diagnosed with hormone receptive her-2 negative breast cancer in March this year. I had two 39mm tumours in my left breast. At the time of diagnoses I said I wanted both breasts removed but my consultant said there was no point as recovery time would be too much and there is only a very small percentage of me getting it again in my other breast. I have never understood this as i think if your going to get breast cancer there will still be a breast left for it to grow in. So I went ahead and had my left breast removed and reconstructed. I am currently having chemotherapy, then radiotherapy then tamoxifen for 5yrs. When i mentioned having the test for the BRCA genes i was told not too. My family history on my mum’s side is when my mum was 19 my dad says she had a malignant tumour removed from her breast in a hospital in london, she never had chemotherapy etc and at the time the medics couldnt beleive someone so young had it. When my mum was 36 and i was 8 she was killed in a traffic accident. My mum’s 5 sisters have told me they never have had breast cancer and do not know if my mum did as she ran away with my dad!. My dad’s side i have never met and he hasnt seen since he was very young but as far as we know there is no history. Do you think I would qualify for the BRCA test? there is a big question mark over whether my mum had it and if it is in my genes then surely i should opt to have my right breast removed as i hopefully have many years left in me and i never want to go through this again. I just dont know and understand it very well. Also as I have been lucky enough to freeze 8 embryos (we was two wks away from having IVF treatment before i was diagnosed so went ahead with the egg retrieval) if i was to become a parent to a daughter dont i owe it to her to see if i am a carrier? plus my sister is 30 and has a 11 year old daughter, maybe she is a carrier too. I just think i need to take the test. Thank you for reading Hobo xx

Hi hobo

Only just seen your message. If your mum had a malignant tumour its very unlikely she would have had no treatment what so ever… Normally you would at least have radiotherapy or depending when it was a full mastectomy… I was a nurse in the 1980s in london and we were still pretty much doing mastectomy for everybody. And around that time tamoxifen was pretty standard too.

Cancer registries were set up across the uk from around the 1950s so if she did have cancer there houd be a record of it so it might be worthwhile asking for a referal to genetics nyway to discuss it as the genetic team can search the registry if you can provide her details… Like hospital where she was treated and date of treatment.

In terms of your own risk if your mum did have breast cancer then this wouldmean you had a slightly higher risk of developing bc and although you dont quite meet the criteria for testing as you and your mum would have 19 points and its usually 20 they need to test but there maybe some leaway here if its disovered that your mum did have bc at such a young age.

If mum is found not to have had bc then its very unlikely they would test you as hormone positive bc isnt linked so strongly with genetics, however your sisters and daughters would be eligible for early screening from at least age 40… This is usually annual mammo between 40-50 some places will also do a mammo every other year between 30-40.

But in younger women its important to be breast aware as more BCs are picked up through breast awareness than screening.

BTW Even with genetic cancer it is extremely unusual to get bc under age 30.

Hope that helps a bit .

Lulu xx

Thank you so much Lulu for your reply thats the most informative message i have had so far at my hospital they dont explain it very well, they are adamant I dont need the test as they say its unlikely my mum had it. I did think it would be strange if it was cancer and she never had a mastectomy or chemotherapy but because it would have been about 40yrs ago now I didnt know what it was like then so you have helped me understand.
Many thanks xx