Hi there, I was wondering if anyone here could give me some advice?
My family has a high incidence of breast cancer and slightly less of bowel cancer. My mum was first diagnosed with breast cancer at 34, then again at 51 and her cancer developed secondary tumours a couple of years later, now terminal. She’s an only child but her mother and two aunts had breast cancer, as did her grandmother. I’m 31 and have been told I’m high risk but as my mum tested negative for BRACA1 and BRACA2 the genetic consultant I was referred to has said that I cannot have MRI scans or mammogrammes on the NHS until I’m 35. My mum had already had her first diagnosis by this age. The consultant apologised for this and said that in her professional opinion I needed to get yearly MRIs done privately as she feels I am high risk but due to an as yet unidentified genetic varitation. I have a quote for £1000 from a clinic and there is no way I could ever afford this, never mind every year.
I asked her what other advice she could give me and she said to have children and breast feed! Apart from the fact that my mother had given birth to and breast fed me and my brother by the time she first had cancer, I found this comment to be inappropriate in so many ways.
What I’d like to know is if anyone else has been in the situation, identified as high risk but refused screening? Is there a way round this as the earliest I can have anything on the NHS would have been a year too late for my mum. I’m so angry that a genetic consultant can tell me that our history is most certainly genetic, with an early onset, yet can’t offer me anything as I fall through the funding gaps.
Thanks for your help, Fx
you would be considered high risk in our clinic too and would be eligible for early screening from age 30 with mammograms every 2 years until 40 then annual to 50 then 18 monthly to 70.
MRI scanning is recommended for BRCA1 and 2 carriers and people who are at 50% risk of being a BRCA1 carrier (but not BRCA2)… although those in their 30s assessed as having a greater than 8% risk in the next 10 years are also included… however many health boards/trusts do not have the funding to implement the recommendations yet so are continuing with mammo only screening.
screening doesnt prevent you getting cancer… its looking for cancer and mammography isnt such an effective way of picking up cancers as MRI in younger women although it is currently the only method routinely used… we screen from 5 years younger than the youngest affected person but no earlier than 30. the best thing is to be breast aware…
get to know what is normal for you. if you notice any changes to your breasts such as nipple changing direction, dimpling, rash, itch, pain, nipple discharge or lump then contact your GP asap… if you are referred to your breast unit very often they will do an ultrasound and/or mammo if they are at all concerned about your symptoms…
there may at some time be research that you can take part in for increased screening… there is a research trial called FH02 and although you dont fit the criteria at the moment its also from age 35 but it is looking at the benefits of annual mammography between 35-39.
as for your geneticist telling you to get pregnant and breast feed although these do reduce your risk it is only by a very small percentage, other ways to reduce your risk are to keep active, maintain a healthy weight and diet and avoid too much alcohol.
Could I suggest you give the helpline here a ring about your thoughts on this matter and have a chat with one of the staff here who will be able to support you.
I think the problem is that as my mum isn’t a carrier I’m assessed as not being likely to be and the NHS won’t fund testing for me. They will happily tell me my risk is very high and likely to be genetic though! I just expected to walk out of the clinic with some kind of support, not just ‘come back in 5 years and we’ll see what we can do’.
I called the helpline who were very good and were disgusted with my experience. Apparently most women with my family history are offered testing, MRIs and counselling re bilateral mastectomies etc. I just want the best chance of catching it early that I can have.
The advisor told me to go back to my GP and ask for a referral to the Royal Mardsen in London (I’m in Leeds) as they may be able to offer me yearly MRIs. It’s not a dead cert though. Even though it’s every female in my family, with my mum first diagnosed at 34, I still can’t get anything for free on the NHS until I’m at least 35. I can’t get my head around that!
Thanks for the replies,
fx
Fearne if more family members than your mum have had breast or ovarian cancer you may actually be able to have some earlier screening. Usually it is 4 breast cancers under age 60 or ovarian at any age over three generations. So if say it was mum, aunt, gran and great gran. Or if somebody had bilateral breast cancer not twice in the same breast. So it is still possible you will be able to get increased screening. However most of the ladies who use this site just found lumps or other symptoms themselves so just be body aware. Also guidelines and policy are always changing so it could all change again before you start screening. The reassuring thing is that they haven’t found a gene change in mum which would increase your risk of breast and ov ca much higher than it is.
Also don’t write off your referral to the marsden just yet. They are very up on genetics.
So sorry about your mum ((( Hugs)))
I am at the moment enquiring about the BRCA1 test & how much it costs because of the TN in mine, my BN told me that its highly unlikely because of the amount of women im my family that go way back clear …on both sides (God please let it remain that way). but she said to me that if id had close immediate fam that they will test … im sure thats what she said to me today … although my onc told me NHS dont do the test. Ill post again when I find out its got to be cheeper than £1000 … the one I phoned about is an online one waiting for one of their medical advisors to get back to me Ill chase it up tomorrow & let you know
Mekala X
If any of you have concerns it may well be worth looking at breastcancergenetics.co.uk
I contacted them after reading an article in the Daily Mail about them helping people with family history. Wendy Watson who founded the site and was recently voted woman of the year was extreemly helpful to me.
I was refused BRAC testing even though I had high family history risk, but after contacting them and various phone calls, I was referred back to my GP with the necessary amunition and got the referral and testing I had initially been told I couldnt have. Am awaiting my results. May be worth a try, good luck
Lynn x
Hi again
I just got off the phone from a health advisory one of their consultants is going to call me back tomorrow they took all the details of the cancer & that I have no fam history as far back as we can go for both BC & Ovarian & they said in my case it was worth a consultant to weigh up if it was worth me spending out as its so expensive privately & was also told those in high risk can be refer to the Royal Marsdon Hospital in London where they do alot of gene testing but you need a refer from your GP but they dont always accept all referals but this would be free. Private testing for the BRCA are £2000 private I was so shocked. Although ive been told it is highly unlikely in my case you never know & it is peace of mind especially if you have daughters I have 15 yr old. But with me having no family history I probably wouldn’t be refer Ive also got 5 sisters 2 step 3 older older & 2 younger so this too plays on my mind.
But for you Fearn if you have a good GP with your history im sure he /she would refer you
Mekala x
Only just found this thread. I have a very strong family history( all ten women from last 3 generations had BC before aged 45 and my mum was 29 and then 34 when she had it) I have been screened and had annual mammograms and ultrasounds since the age of 30, and my BC was picked up on one of these annual screenings, i would never have found it myself until it was too late. As for breastfeeding and having children-don’t listen!! I did both and still got BC. Have had genetic testing but none of us have BRCA 1 or BRCA 2 but consultant said the history was so strong it has to be genetic. I am going to have double mastectomy when my treatment is finished. i have had to fight to get surgeon to agree to it even though he agrees that it reduces my chances of another BC by about 90%. He just says they can deal with it if it comes back. I however, don’t want to go through operations, chemo and rads again if at all possible. I have had to go for counselling with a psychologist and i have now decided to go ahead. I think you should ask for appt with clinical genetics people and insist on screening. You shouldn’t have to pay for it either! Good Luck xxx
Rachel