hy all,
I lost my twin sister to bc in Sep 09, i have since had to have bc reducing surgery on left breast that went wrong, so now have to have nipple re-construction, then later in the year i have got to have right breast done, the thing is, i have been told that its not IF i get BC, but when, i would have thought they would do a genetic test when my twin was alive, so confused and scared of what the future holds, i have so much admiration for you lovely ladies to are still going through all this treatment, how do you cope. xxxx mardijane
I’m appalled that anyone could have claimed that it’s a foregone conclusion that you will develop bc. If your family has a genetic misprint, you have a 50/50 chance of having inherited that gene. It’s most certainly not a foregone conclusion. Do you have any otehr family members who have had bc? If so they could be tested for the gene in the first instance.
I’m so sorry to hear you have lost your twin sister and had surgery that hasn’t gone well.
I guess they (were they medicial geneticists?? or just BC surgeon/oncologist?) were making the assumption that identical twins have identical genes. Are you identical?
I find it hard to believe you have gone through all this and yet no genetic testing was done?
You surely didn’t ‘have to have’ BC reducing surgery, as that is a matter of choice, but maybe they have made you feel it was your only option?
You may be interested in this: scientificamerican.com/article.cfm?id=identical-twins-genes-are-not-identical Take a look at the comments at the end too, as there are some stories about twins and disease there too.
Edited to add this article too: cancerhelp.org.uk/about-cancer/cancer-questions/breast-cancer-risk-in-twins
I’m sorry to hear of your loss and the difficulties with your surgery.
Like Elaine, I’m appalled that you were told this. As I understand it, even if you have inherited a gene that predisposes you to breast cancer it is still by no means certain that you will get it, just that it increases your risk. Breast Cancer care has a leaflet about breast cancer in families which you can get from this site - with luck a moderator will post a link to it soon …
If you haven’t already seen a genetic counsellor, your GP may be able to refer you and you can talk through the risks with them.
Eliza xx
mardijane
im so sorry to hear about your sister
however your story sounds very bizarre… if you were having risk reducing surgery why did they not do the normal and give you a bilateral MX and recon instead of one at a time?
also if you and your twin sister were fraternal twins then you have as much chance of getting BC as you would if you were normal sisters and even if you were identical twins then your risk of getting BC would only be increased if you both carried a genetic fault… but by no means would it be a certainty.
i carry brca 2 and my kids have a 50/50 chance of inheriting from me and if they do inherit it then my daughter has a risk of developing BC of between 60-80%… that means she has a 20-40% chnce of not developing it even if she has the gene… with brca 1 the incidence is slightly higher but again its upto 85%.
surely they should have offered you genetic counselling before opting for risk reducing surgery.
this is the BCC breast cancer in families booklet…
breastcancercare.org.uk/upload/pdf/bc_in_families__final_12_june_08_layout_1_0.pdf
Lulu xx
Hi mardijane
I’m sorry to hear about your sister. As well as the support you are receiving from the other users during this difficult time you may find it helps to talk things through with one of our trained members of staff on the BCC help line. Here you can share your concers and feelings with some one who will offer you a ‘listening ear’ as well as support and information. The number to call is 0808 800 6000 and the lines are open 9am to 5pm Monday to Friday and 9 to 2pm 9am to 2pm.
I hope this helps.
Kind regards
Sam (BCC Facilitator)
Hya all,
Yes we did see a genetic doctor who put me at high risk, the reason for the surgery was nipple discharge with dialated ducts that had signs of change, they did say about the mx but to have this surgery first, i have been under the breast clinic now for many years, even before my sister was diagnosed with bc, for many breast cysts and other problems, i have since found out that my sister had a blood test that was kept in a blood bank should the needs arise for these tests, i have since had an appointment to go for the blood test to test the genes. I have three teenage daughters that i need to think about, there is a very strong family history of cancer, my mom died of lymphatic cancer, my sister has a very rare form called M E N syndrome, its that rare they cant even find the faulty gene, i have had cousins die of breast and overian cancer, hope they will tell me one way or another.
Many thanks for all your support & commentsxxxx
Mardijane
Hi Mardijane
Just wanted to say that I’m an identical twin and while I have had bc since 2003, my sister - so far at least - thankfully doesn’t have it. Obviously our family history is different from yours, but I wanted to add to the comments you’ve already had that it isn’t a foregone conclusion that you will have it too just because your twin sister did.
Sending you a big cyber hug, twin to twin.
Alison x