wot this and wots next ?

i got a letter today from the hosptial it is a blood form for me to have for family history wot do i do with it ? i thought it was for blood test but it has in bold letter BACK UP REQUEST FORM printed on it. my doc told me to have a genetics test done as my mother had breast cancer some yr back and as i have 5 daughters want to know if they at high risk or not

Hi. I had the genetic testing and it did involve a blood test. However, it was done at the end of a special genetic counselling session. I am really suprised you just got something through the post!!! How about giving them, or your GP a ring on monday to find out more. The genetic testing needs to be carefully thought about as being positive has implications for all sorts of things.

Good luck!

Sadie Xx

Dear honeybee,

I thought the BCC publication “Breast cancer in families” may have some information which could be useful for you. Here is the link:

breastcancercare.org.uk/upload/pdf/bc_in_families__final_12_june_08_layout_1_0.pdf

I am sure some of the other forum members will soon be along with information and support for you, or you could talk it over with our Helpline staff. The helpline will be open tomorrow (and all weekdays) from 9-5. Saturdays 9-2 The number is 0808 800 6000

Very best wishes

Janet
BCC Facilitator

well had the bloods taken yesterday only for them to ring this am to say i would need to do go in and have it done again doctor has said sorry so im back next weeks for more blood we will get there

honeybee have you had any genetic counselling? i would be very wary of having bloods sent for genetic testing without some indepth counselling before hand… we get women coming wanting tests but after they have actually gone through the implications they do sometimes change their minds.

things like how you would actually feel if you were found to have a gene mutation that caused you to have an increased chance of further BC and also increased your risk of ovarian ca and sometimes other cancers. also how other members of your family would feel if they found out you had a gene which they may too also carry. what you would do with the information once you had it eg risk reducing breast and/or ovarian surgery, plans to have more children etc. how you would feel if the test results were negative. how having a positive test result could impact on things like insurance and mortgage etc for you and any other positive family members.

also that even if they are testing you the majority of tests do not identify a gene (out of individuals with a high enough risk to be tested only 20% actually carry a gene change… about 5% of BCs are genetic however another 15% have a high family history which may have a gene that hasnt been found yet responsible, the other 80% are just random)…

if it comes back that no gene is found this means your risk and family’s risk is the same as it is today however if you are found to have a gene change your risk of more cancer would go up and your family could then be offered testing… if found positive their risk would also go up but if found negative it would go back down to population risk.

have a good think about it before saying you want tested

Hi Lulu

Just wanted to say I found your post very interesting.

I am being put forward for genetic testing because my maternal grandfather died of breast cancer as did his mother and his sister. My Consultant did say the risk is high due to it being my GRANDFATHER that died as this is rare. He died 14 years ago and none of us put two and two together or can remember the hospital in London mentioning that other family members might be at risk. That said they may not have known so much about it then.

My Consultant became very interested when I was asked by her if there is a family history and I said yes my grandfather.

I will bear in mind your comments concerning genetic counselling though. Whilst I do not have any daughters both my brothers do and my older brother has 2 granddaughters. My niece who has the two daughters also has MS so the implication on her emotionally if she were to be at risk of breast cancer could be immense so this must be considered but I do know she is concerned having found out her Aunt has it!

Watch this space I guess.

Thanks
Tracy x

lu i understand wot you are saying but im not doing this for me my daughters have ask for it to be done
i one of these ppl that think if its going to happen it will happen nothing i do will change that
my doc has put me forward for this as i ask wot risk my daughters have my mother had bc and i have it thats from my side but for my daughter it both grandmothers and mother so it kinda makes it more of a worrie for them

Tracy
if your mat GF had BC but your mum didnt have then it makes it slightly less likely to be genetic as the risk of BC in people with mutations is so high you would normally expect her to have had BC or if not then some other form of cancer, however i have come across one family where mum didnt have any cancer.

male breast cancer is extremely rare with only around 300 men getting diagnosed in the UK every year… it has a higher association with brca mutations eg around 10-20% but still most male breast cancer is sporadic… the two known cancer genes have only existed since 1994/95 so its very likely that when you GF was diagnosed there wasnt so much knowledge.

Maz
your right that you cannot do anything to prevent you having a gene but if you are found to have it you can opt to have risk reducing surgery such as bilateral mastectomy and removal of ovaries and tubes… i had a hysterectomy and got everything chopped out 6 months ago but have had Mx yet… thinking about going for it next year… my daughter is 20 and hasnt been tested as shes not really worried about it yet.

my mum had bc when she was 57 but the gene didnt come from her it came from my dad and we have no history of BC on his side of the family so we are a pretty unusual family.

the results can take a very long time to come back too… i was entered in BRCA 3 research and it took almost 12 months but then was checked through the labs and this was much quicker… only 4 months!

good luck both of you

Lulu x

lu i was thinking the worst before wle about have a mastectomy and did say if it came to it i wanted a bilateral as for a hysterectomy well i ask for my gear box to be taken away many years ago i have 6 kids and have had PID but they wouldntd do it so for me im not worried about that , my mom is the first to have bc from her side of family infact she was the first to have bc in our family from both side bowl cancer/cancer of face is the only 2 we know of in the whole family from my side and thats nothing to do with bc no link at all
i have had problems with my breast since i was 30 as has my sister (mainly cyst) and my eldest is 24 now we have been told if something was to come out of this test then yes they could opt for the full works and have it all took away they still havent had familys of there own yet so dont think they would go that far yet but more than anything they would be screened early with out testing they will have to wait like everyone else and tbf if i dont get the test done my eldest would and still is going ahead with family history (her dad side to be included ) guess wot makes them do this 10 yrs ago all 3 gandmothers had bc 1 had a mastectomy 1 just had rads and 1 lost her fight for life (4 years ago )after 6 years of fighting and now they have to watch me go through it all it one thing im going though this is another wot my daughters are going though if i can help them in any way i will for there sake and for my grandchildren

Dear Lulu

Thanks for your reply.

Mum came to see the Consultant with me and hubby when I got the results of the biopsies and she asked the question why has it missed her and gone to me. The reply was that this can happen and as my mother is 71 she still needs to be aware that it could be a possibility. Her father, my grandfather was in his early 80’s when he got the original dx and after lump/tissue removed and node clearance he had 3 clear years on Tamoxifen before the secondaries appeared and he gave up the fight and sadly passed away.

Mum does have and will continue to have her regular mammograms (started at 50) as she has always been obsessed with getting bc anyway and checks herself constantly. She is even worse now I have it!!!

Interestingly, as I had a prolapse of the womb a week after dx of bc I have now been told once I am well and treatment is finished I need a hysterectomy so no risk of secondaries here I guess!

This is a really interesting thread though, and Maz I do completely understand your fears and concern I would be just the same.

Love
Tracy xxxx

Maz i understand your feelings… and everybody reacts in different ways, even if you test negative your family will still be at an increased risk of bc and will get screened from 40.

im not sure what the screening for women with BRCA mutations is like where you are but, ours is mammo every 2 years between 30 and 40 and every year between 40-50, then 18 monthly… im actually very surprised with your family history they are considering genetic testing as we have a pretty strict criteria and many health boards in england have even stricter guidelines… its good that yours are willing to do it.

Tracy
i will be interested to see what comes from genetics… will mum go for testing if you test positive?

im glad she is still having regular screening as the risk of bc in women in the 70s is 1 in 13 for those in the general population so with a gene change you would normally expect to have seen some form of cancer by now… but mum could just be very lucky and long may it continue.

good luck with your hyst when the time comes

love lulu xx

Hi Lulu

Yes Mum would most definately go for testing as I said she is so scared of this and that was before my diagnosis, she was the one who drummed it in me from puberty to check check and check again hence the early detection of my lump.

Thanks for the good luck message concerning hyst…we women do have it rough and I will be sad actually as I have managed to keep my bits much longer than Mum who had cervical cancer at 32 and I am now 46! Only had a smear three months ago with the all clear…such a shame but I will be glad the feeling of losing your insides all the time is wearing a bit thin!!!

Love
Tracy xx

i had my last smear in aug and then hyst in sept so least i knew i had no cervical probs before the hyst… at least you will get some relief from your prolapse too… do make sure you ask them to take the cervix too as sometimes they will leave it behind which means you still need smears however with lower oestrogen you can find you have vaginal dryness which makes going for a smear even more uncomfortable than usual.

Lxx

Hmm interesting thread. Just received a letter today asking me if I would like to take part in a trial too see if my bc is the genetic kind.
My mum was diagnosed with bc in both breasts in December 2008. Her consultant advised me to get checked out even though I was “only” 47 at the time and I ummed and aahed about it as had no lumps but lo and behold I had bc too but just in one breast. The consultant said it wasnt anything to do with my mums bc though and was just a coincidence so will be interested in the results of this trial in my case. Just need to have a blood test.