Newly diagnosed with bc last Tuesday. Had MRI scan this morning to determine if there are any other lumps lurking before decision on treatment plan. Reason for MRI is a) breast tissue too dense to show anything on mammogram (only 36) and b) not sure if my bc is hereditary - mother died of bc at 41 but I was never offered genetic testing, no other family cancers. So, my question is; will they now be able to do genetic testing even though my mother is deceased? If the MRI shows only the one lump, I’m going to be worried for the rest of my days that it may come back (especially if it is hereditary). However, I don’t want a mastectomy unnecessarily if the cancer isn’t hereditary.
If I am able to now have genetic testing, how does it work and how long for the results to come back?
I’m a bit clueless with this genetic side of things, so any advice/info greatly appreciated!
I have the genetic cancer gene brca2. Was dx 18 months ago in dec 07 was 32 when dx. I had strong family history of my dads side his mum and 3 of her sisters all died in there late 40’s early 50’s. so when i was dx i asked to be refered to a genetisist. You fill out forms of your family history and then wait to see if they think you should be tested, (this can take a few months) if they do they will arrange a appointment to see you and take a blood test thats it, my results took 8 weeks some can take even longer. When i was told that i had brca2 they then tested my sister and my dad (my dad has the gene but my sister hasnt).
I have since had bi-lateral masectomy and recon and ovaries and full hystrectomy as the brca2 gene increased my chance of reaccurance to 80% and ovarian cancer increased chance of 50-60% it was a risk im not willing to take. Full story on profile if you want to know it.
Im not sure if they will test you, has your mum got any brothers or sisters who have had bc?
Hope this helps if theres anything else i can help with fire away if i cant theres lots of lovely people on here who will.
Sorry to hear of your diagnosis. As your mum had bc at a young age and now you too I should think you will be offered genetic testing. Its quite a straight forward process, a geneticist will assess your risk based on family history, a blood sample will be taken then you wait for the results. It took 18 months for my results to come through but that was 4 years ago, I believe these days they come through much quicker than that, though a lot does depend on your genetics clinic. I don’t think at this stage you need to rush into making any decisions about surgery. Yes if you have a BRCA mutation you have an increased risk of recurrance and may be offered preventative surgery but the choice will be yours. I have a BRCA 2 mutation and have had bc, preventative surgery is something I haven’t really wanted to pursue though I might change my mind in the future.
Sorry to hear of your recent diagnosis. It is tough but you’ve come to the right place as there is so much support here.
I wanted to reply to you as many of your experiences and questions are similar to my own.I was diagnosed with DCIS ( an early form of BC) in March.I am 37.I’ve had two WLE’s to remove the lump but no clear margins so I need a mastetomy anyway. If it transpires that I have the BC gene then I may well have the good one removed too.
My Mum died at 48 from breast cancer and her own Mum died of stomach cancer. I asked about genetic testing and they gave me the forms to fill in. You need to know a little bit about your family history with dates etc.The fact that you have been diagnosed with BC makes the process possible- you cannot have the test unless someone living in your family has BC. Like you I wanted it done years ago but couldn’t because I didn’t have BC then!
If I was you I would request to do this now as the sooner you get the forms in, the sooner the forms can be assessed.Once they get your form they assess your risk and timetable a slot accordingly. In my case although my mum had it , her mum’s stomach cancer isn’t really related. However I have a very small family, no aunts etc so they decided to see me fairly quickly but I’m not really deemed ‘high risk’ of the gene.I’ve got a 12% chance of having the gene they think.I was told by the genetic team that if I could get the consultant to write a covering letter explaining that the results of a genetic test may influence my choice of surgery/treatment then they could process the form more quickly. My consultant was reluctant to do this for various reasons so I just sent my form off anyway with a covering letter explaining
my situation so far.
Unfortunately it seems that my genetic results won’t be back in time for a double mastectomy to be considered so I’m going to have the cancer one removed first and deal with the other later. I was told that once they have taken your blood the results can take anything between 2 weeks and 2 months. I have also heard that this can vary depending on where you live though so don’t rely on this. Some genetic centres are quicker than others. It might be worth finding out which genetic centre you’d vbe referred to and give them a ring?
Sorry this is long but I hope it is helpful! Take care and good luck ,
My mum and I have both had bc, plus my mum’s twin sister, their older sister and their only female cousin - there is only my sister who so far hasn’t had it. Although my mum and aunts were a lot older when diagnosed , I was 42 and am the only one with secondaries. We enquired about testing last year, filled forms in earlier this year and went 3 weeks ago for further discussion and have our bloods taken. I was interested on the grounds that a bc gene could make other cancers more likely and want to be aware and take any necessary action asap(even though my oncologist and surgeon are providing 3 month checks) and also if it helps research. My mum’s twin sister had it in her right breast but the rest of it have been left side. I’m concerned that I may be more susceptible to getting it in my right breast with mum and her twin being identical if you see where I’m coming from.
I have to say I was very disappointed with the meeting - wasn’t told anything I didn’t already know. They just said a summary of the meeting would be sent out (not received yet) and that we would get the results of the tests in about 18 months and wouldn’t hear anything else from them. They reckoned there is a faulty gene in the family but it may well not be brca1 or 2. Hopefully my secondaries won’t progress too fast and I will see 18 months time ! It was all a bit of a letdown and we felt they weren’t interested. They did mention concerns about my sister but an answer in 18 months is a long time if she wanted to know.
Sorry if this is a bit long and I hope it hasn’t put you off.
You may be interested in our booklet on the subject of breast cancer in families. It contains lots of information which may be useful for you and includes details of what happens during genetic testing and counselling.
I’ve been thinking about you and wondering how you got on with your appointment at genetics. I’m sorry to hear it didn’t go well and you didn’t get much out of it. I waited 18 months for my results but that was 4 years ago, I thought results came through much quicker these days. Do you mind me asking which clinic you attended? It might be worth trying to chivvy them along a bit, in light of your secondaries the sooner you know if you have a mutation the sooner you can be put forward for some of the trials that are going on.
Thanks for remembering ! I was going to pm with outcome but hadn’t quite got round to it so when I saw this thread, I thought I’d put it on here !
I went to Preston as they have a clinic there occasionally run by those from Manchester. The big boss wasn’t there (she was supposed to be according to the phone call the day before) and a registrar did it - he was a consultant paediatrician. At least he was used to getting little veins for the blood test - my veins are really rubbish - even though it tooks 2 goes and some poking around and him looking a bit surprised at how bad they are !! Perhaps I’m just being unfair and it depended on people’s personality. Having said that a friend and her mum had the same experience and felt the same way after their tests last year.
I am at the oncologists on Thurs for a 3 month check and bone scan results so will mention the visit to her - add it to my lists of a million questions (2 lists depending on scan results!).
hi im jude im 35 and a brca1 carrier i got my results within 4months they compared it with my sister who was brca1 carrier
i went to oxford for my test they were fantastic and my councilor was great
i knew my results before i got it all of my family have had cancer very young my great gran nan mum and sister it was obvious to me
goodluck jude