Family history but no faulty gene found

Hi, I was after some advise. I am 38 years old, my mother, aunt, grandmother and great grandmother and great Aunty have all had breast cancer- some under the age of 50- we have had the genetic test for the faulty gene brac 1 and 2 and the result was negative. I am unsure if I should consider a double preventative mastectomy…there is obviously a clear family history, however without the faulty gene would I be offered the procedure? Do they only offer it with the faulty gene? If we did have the faulty gene it would be a no brainer and I would, and I would have them removed…it’s a really hard decision to make ? any advise would be welcome.

Hi Cattylou - very difficult decision .I have had breast cancer and womb cancer - the gynaecologist told me that even if I didn’t test positive for the BRCA gene there are other gene mutations - as yet unidentified that could be responsible for certain cancers and lead to certain cancers running in families .Why don’t you ask this question in the Ask the nurses section and see if they can help ? Good luck - Jill

Thanks for your reply- sorry to hear you have had a tough time. Yes I have actually just emailed the nurse, hopefully they will be able to advise me.

Hopefully they will be able to help - good luck with your decision .Other people I have spoken to have been offered high level screening (yearly mammograms /ultrasound) when there has been a family history even if faulty gene has not been identified - are you in this programme if not you should ask about it .

Yes I was having them every year from 35 but they have now said I need to wait until I’m 40…I would rather have them removed altogether though and not get cancer at all…having seen relatives go through it…and the side effects of the treatment

Hopefully they will give you that choice ,I think you have to have some counselling first so they are happy you know what you are committing to .Hopefully the nurses will be able to advise on both .x

Thank you for taking the time to reply…good luck with everything. X

You’re welcome - if you do go ahead with surgery - if you post in the going through treatment section of the forum , you can get a lot of advice and support from ladies who have had mastectomies .All the best .Jill.

Hi , yes you should be offered the masectomy with a family history even without the gene. My mam and her 3 sisters had BC 3 sisters died mam had a masectomy. Its now  making its  way threw my generation  with no gene been found, my 2 cousins had masectomy after lumps been found, 1 cousin is dying.  We get a mamogram an MRI  and an examination from the breast surgeon every year. I am now 48yrs and  had a biopsy 5weeks ago after 2 lumps being found after my MRI , they are inconclusive so now its a wait for an appointment for my core biopsy, letter says it could be ATYPICAL AREA, anyone had this???

Oh my, I’m sorry to hear about your strong family history. Do you have and children/ family in a younger generation who will be considering the preventative mastectomy? Or will you try and get one yourself? I too have been offered the annual mammogram but not until I’m 40- so I think I will pay to have this private for the next 2 years until then but I will also investigate if I can have my breasts removed…I just want peace of mind.

Yes we all have girls in younger generation but they won,t look at them till their 35yrs. Oldest is only 27yrs. My sister had the preventative masectomy yrs back but i don,t want to go down that road because i feel we will never know how the gene is going to go for the next generation as they need the info to fight to get scans etc. I don,t think my lumps showed up in mamogram only MRI and this happened with my cousin, this is something i need to find out when i am in, i am not getting anymore MRI,s after 50yrs, even though my mam got BC at 48yr aunt at 52yrs and my cousins at 45yrs and 48yrs my other aunt 60yrs and other aunt at 40yrs. As they said mamogram will show it. Its all about funding its so sad.
What is your family history??

Its can be very complicated, we have had all tests and no Gene found. But never misses a female.
Have you been onto Genetics yourself? We started getting seen to by Genetics once my 2 aunts died, my mams 2 sisters , 1 at 40yrs and 1 at 52yrs and by then my mam had a masectomy with BC. My Gran had bladder cancer no breast that we know of, but there wasnt tests like there is now. My other aunt had breast then 15yrs later had stomach but died a week later so dont know if it was ovarian or anything else. My cousin had breast eith double masectomy, now dying with ovarian. But not enough evidence for ovarian to be taken into it. This is why i am not doing preventative unless its life or death for next generation.
We are lucky as by time last generation realised something was wrong in genes 2 of my aunts had died.

I can,t say if MRI,s show up more in everyone, but they did in my cousins, as her mamogram was clear and MRI wasn,t. Same has happened to me. Always shows up in ultrasound aswell. I have been fighting for them not to take away the MRI from me at 50yrs but i think it all comes down to funding.
I feel i will be pushed into a masectomy if they take MRI away which is so wrong.

My mum has BC young not sure age she was diagnosed but died from it at 34. Her mum my Nan died from Overian cancer I think at 61 my nan was one of 8 girls a number of them had ovarian cancer. 

I was checked for genes about 15 years ago but nothing showed Brac negative. I was supposed to have mri from age 30 but when I reached 30 was told wait until 35 then I never got called up so chased them at 37 had my first MRI and there it was already. I now had BC 

I was referred back to genetics who run more tests against I think about 36 known mutations and still nothing. They said they will offer treatments as if I was found positive as such a strong link and they will re-test every 5 years and see if it has been identified yet they learn of new ones all the time. 

I have had double mastectomy cancer side and preventative other side and overies removes. I have a twin sister she has had double mastectomy as we have same DNA and my younger sister of 4 years has had preventative double mastectomy. They will look into overies but once they are 40.