I hope you don’t mind me asking this but I’m undecided and could do with some advice. My mum died of bc when she was 51 after being first diagnosed at 40. Her sister (62) died recently also of bc and my grandmother died of ovarian cancer, all on the maternal line. I have spoken to my doctor about this in passing and was rather dismissive of me I’m assuming this was due to my age I’m 28. I’m thinking that I should be more assertive and ask for either monitoring or a genetic test to put my mind at ease. Has anyone pushed for this or are you usually advised by your doctor to go through testing ?
Hopefully Lulu will come along and help you out in a bit…she’s a breast care nurse who has breast cancer herself and is an expert on the genetics side!
However, from a personal side, I also have a strong family history and understand what it’s like having the worry hanging over you. My mum and grandma died of BC and my aunt has BC. When I was 25 I first went to see a geneticist who told me I wasn’t at any higher risk than anyone else until I was 40. I saw another a couple of years later as was thinking about preventative surgery - but was told the same thing - so thought I would put it to the back of my mind until I’d had children and had breastfed and then would have preventative surgery afterwards before I was 40. However, I just started trying for a family at the age of 33 and was diagnosed and with hindsight I really wish I’d pushed harder - but I believed what the experts told me. Now, I know that I am very unlucky to have developed it at this age - but am still cross that I didn’t pursue it as the worry always hung over me and a diagnosis is terrifying and the treatment is difficult. If NHS funding was the problem I wish they’d have been honest with me as I would have paid for my own MRI scans.
The problem is that mammograms at a young age can be inaccurate and not show up any problem areas - and I think they might be dangerous too…? But I might be corrected on that. The safest and most accurate are MRIs - but they are quite expensive.
I don’t know…hopefully Lulu will have some words of wisdom for you. But if I were you I would ask to be referred to a geneticist to assess your risks. I am seeing a fantastic geneticist now who is lovely and taking it all very seriously and has seen my sister who is 27 and recommended she has annual MRI scans - but I think she is going for preventative surgery which he is supporting. They can assess risks and likelihoods and give opinions which you should bear in mind - but I know what it’s like to have the worry just hanging over you all the time.
I am sure there’ll be some more forum users coming forward with support for you shortly but while you’re waiting I’ve put for you below the link to BCC’s publication ‘Breast cancer in families’ which you may find helpful to read. If you would like to talk to someone further about this then please do phone the helpline here and the staff will be only too happy to oblige. Calls to the helpline are free, as are all BCC’s publications.
I think you should definitely push for a referral to your local Genetics Department as they will take a complete family history. They may still not offer any screening until you are 40 and then it might only be mammograms, but there are lots of factors for MRIs too. You might also push for a BRCA blood test. This shows a faulty gene which could lead to BC.
My Mum had breast cancer and is still alive. Her sister - my Aunt - died of Ovarian Cancer. Two of my maternal cousins also had BC, one has died.
I had BRCA but they didn’t find the gene. I have two daughters in their 30’s. One has a referral when she is 40.
I’ve recently had a genetics review due (July) to my diagnosis last year & family history.
The result of this was a moderatley higher risk than the general population. But a first cousin who was diagnosed at the same age as your mother & died of BC at 44 had 2 daughters who are scheduled to start screening at 40. Her oldest daughter is seeing her GP shortly to discuss as she is approaching 40.
Hope this helps; any referral would be through your GP; I had to complete a family history of ages when diagnosed type of cancer (other cancers in the family were included)then had an appointment with a genetics councillor. Recently contacted her as an elderly Aunt now has BC & starts her chemo this week. The genetics councillor is going to re-run the history to see if any significant change in risk as then I may be offered a test for BRCA; but I don’t expect it to be offered.
Go on-line and search for the Genetics team local to you as the questionairre may be available for download. Once completed go to your GP again to discuss the detail & possibly be referred.
I found the family booklet on this site useful; so have a look at that as if I remember there was a list of who was classed as a close relative and when you should be referred.
Good luck; it could be due to your age as screening is normally offered from the age the youngest diagnosed person; which for you would be your mum. I know this is worrying you; so you need to very breast aware and go to GP with any concerns.
You can ask for a referral to genetics at any age. Tell your gp to look at the referral guidelines… 3 close relatives is more than enough to get you an appointment at genetics to discuss your risk.
You don’t say what age your gran and your aunt were when they were diagnosed as that has more of a bearing on your risk than the age when they died, but from what you have said you would be at least moderate risk if not high risk for screening.
Screening usually commences from age 40 or 5 years younger than the youngest age of onset. So in your case from 35… However the current guidelines on early screening are that it is recommended to commmence annually from age 40 to 50 although some areas will start it earlier, but this may not be annually… There is a research trial currently in place looking at the effectiveness of annual screening of women at an increased risk between 35 and 40 so by the time you are 35 it may indeed be standard.
With regards to genetic testing this is unlikely as normally we tested affected individuals and as your relatives have died there is nobody available for testing… It is very expensive around £2000-£3000 but you can opt to have it one privately. The reason they only test people ho have had cancer is that we know something has gone wrong there and it could be a faulty gene. However in unaffected individuals it doesn’t I’ve a very clear picture as we cannot know if there was a gene change you just haven’t inherited makin our risk normal. Or if there is a mutation we haven’t identified or some other reason and your risk would remain increased.
Having screening and testing are personal choices but you are not obliged to have either even if you do fit the criteria so a good first step is getting that genetics appointment so you can discuss it in more detail.
Genetic breast cancer is pretty uncommon only around 7% of all breast cancers are caused by faulty genes… Only around 20% of people tested are found to have faulty genes… You have to be from a high risk family to be tested, the majority of people with a family history do not have BRCA1/2.
Best advice s remain breast aware… Get to know what your breasts look and feel like, what is normal for you… And see your gp if you notice any changes.