Hi … I feel a bit of a fraud using this forum as I do not have BC and after reading alot of what you ladies have gone through and had to put up with my dilema seems to pale into insignificance but in saying that I don’t know who better to ask than people who have probably been seeking advice and possibly been in similar situations…
OK my situation… I am 46 years old and have 2 wonderful teenage daughters. I also hve 2 older sisters who have both had BC … the younger of the 2 (for argument sake we shall call he sis1. :-))was first diagnosed when she was 31 and opted for lumpectomy and radiotherapy … 12 years later at the age of 43 she got BC again in her opposite breast and again had lumpectomy followed this time by radiotherapy and chemo… other sister(for argument sake we shal call sis2))got BC at 49 she also opted for lumpectomy and radiotherapy… seeing them bravely go through everything is not nice and seen as how there is no family history of BC it seems they have both been really really unlucky …sis1 went through the process of gene testing which proved she didn’t have the gene so no point in testing sis2 or me… I have been under regular survellience since i was 30 (which is awesome and I cannot fault the NHS) with yearly mamo’s and on 2 occassions ultrasounds and biopsies… Although i think it really unfair that my 2 sisters have had BC and I have thus far escaped I now have a concideration to make and would appreciate any views or comments…
I recently had my yearly Mamo which again found that I have several cysts in both of my breasts… the largest being about the size of a walnut… I am a single parent and I do not want my girls to have to … shall I say go through the trauma of a mum with BC… I have 2 weeks ago had my check-up with my consultant and asked about ‘prophylactic’ treatment … she thinks that it is a very reasonable request and is referring me to a plastic surgeon to talk about and consideration of bilateral mastectomy and immediate reconstructive surgery…I would really appreciate anyone who knows anything about this to give me there advice…
Many thanks and apologies to those who have far bigger problems than I!
MMJ
if i had this option and knowledge prior to my dx would take the surgery and even now would have my other breast off tomorrow if it dcreased chances of this disease gripping you … it is a very personal choice you will do whats right for you …good luck with your decision and i hope you never have the need to be on here for the wrong reasons take care love rachelx
Hi MMJ
i work in breast cancer genetics and was just wondering if your sister who had the gen test was tested through the BRCA3 research trial or through the diagnostic laboratory and when it was… there have been quite a lot of developments in respect of gene testing and it is possible that if she had tested negative through the BRCA3 that her blood could be sent for further testing through the diagnostic labs… its very rare it would come back positive after having a negative result but it does happen as this is what happened to me.
as for the option of having such radical surgery you may want to go done the route of ensuring that your family have had all possible testing before opting for surgery although it is unlikely to change the results you may want to check this first… also if at a later stage a gene change is found in your family and you find out that you havent inherited it will you still feel happy that you have had prophylactic surgery… the best option is to speak to your PS as he can advise of complications and surgery options so you can make an informed decision.
i have referred a number of ladies in a similar situation where no gene change is found for discussion on prophylactic surgery… some have proceeded to surgery whereas others have decided to continue with screening… the best option is to talk it through in the first instance.
Lulu xx
HI
Some genetic tests only test for around95% of genes.
DO you know if the tests looked at 100% as this could be worth investigating?
Good luck
x
I was diagnosed 30 Dec 2010, with Agressive Lobular BC, in my left breast, I was asked if there was any family history of BC, i said no because the only female in my family was my mother, as any other females deceased years before i was born. Yesterday i was told my younger sister has just been diagnosed with the same as me in the left breast, only her tumour is small and near the breastbone, she goes for her op on 12 may, my tumour was quite large 32mm and in the upper part of my breast. Removed in Jan, I am currently undergoing chemo. My worry is, now my sister has been confirmed following a routine Mamogram, is anyone else in my family at risk, ie my daughter, another sister who is younger than me but older than the one who has been diagnosed, other neices or even nephews. Can anyone tell me do i need to worry or is it more likely that the link comes from HRT, i took it for about 10 years and stopped about 6 years ago, my sister was currently taking it when diagnosed, after about 9 years, is there any stats of the risks linked to HRT. I read today that 1 in 8 women get breast cancer, we now have 2 sisters diagnosed in 3 months, how usual is it for that to happen. june
Hi June
You may find the BCC publication useful to read, it’s called ‘Breast cancer in families’ and you can read or order a copy here:
breastcancercare.org.uk/healthcare-professionals/publications/worried-about-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/70/
If you have any further concerns please feel free to call our helpliners on 0808 8000 6000, the lines are open weekdays 9-5 and Sat 9-2 and our team will be more than happy to talk things through with you. (closed B/H’s)
Take care
Lucy
Hi June
Very sorry to hear both you and your sister have been diagnosed.
With regards to risk a lot will depend on the age you both were at diagnosis as to whether other family members are at risk. If your average age is 50 or below then there is a higher chance it’s familial but if you were both over 50 then it’s more likely just to be unlucky chance. Is the no breast or ovarian cancers on mum or dads side if the family?
If you and your Sis average of onset was under 50 then your daughters and other sisters would be screened annually between 40 and 50. In some areas even if you were both in your 50s at onset your sisters and daughters would be screened between 40 and 50, however if one of you was 60 or over then that lowers the risk of it being familial so screening would be though the national breast screening programme at 50 (although this is being reduced to 47 in England in the near future).