Hi, Trish here just wondered whether there is anyone else with the same diagnoses. I am 49 years old and my mother lost her battle to breast cancer at 48 years old and my sister at 40 years old. I have two aunties whpo have survived breast cancer. I have been tested for the braca gene but came back inconclusive. Apparentley they believe there is a bracka three gene and are currentley trying to find this but it is very elusive. The reason they think there is a bracka 3 gene is because of cases like mine where there is a strong family history. I had a mamogram every year since my early 30’s but nothing every showed up. My daughter has been advised to have an MRI as these are more accurate in the under 30’s. I have just finished six months of chemo and have surgery next month.
Hi trishiepie,
I have put for you below the link to BCC’s publication ‘Breast Cancer in Families’, which you might find helpful to read.
www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32
Our helpline team will also be only too happy to talk to you more about this if you would like to give them a ring. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.
Take care,
Jo, Facilitator
Hi trish,
ibc here too, but no family history at all. I did have a second primary within a year of finishing ibc treatment (chemo, surgery and radio). Not triple negative. I haven’t heard anything about the third brca gene, I hope they discover more soon, and treatment to go with it. 
wishing you the very best the surgery next month. Congratulations on having finished your six months of chemo.
christine
Hi, Christine Apparentley BRCA 3 is very elusive and hard to find, they said that this may change in 10 years time if they retested, I hope advancements are made in there is something there for my daughter if she gets it. I see in the United States they are working on a vaccine for IBC. It seems ti be rare to have IBC with triple neg I am struggling to find anyone with it. Pleased to have chemo behind me, just left with really sore legs. I hope everything is going well with you, how long ago were you first diagnosed?
Hi - I was diagnosed with IBC back in 2008 and used to live on here back in the day… but rarely come on here now… Trish I was also a family history patient who used to have to go for annual mammograms before I got IBC and my BRCA 1 & 2 tests came back negative… I was told by the team at Newcastle Centre for life that they think there are probably several more BRCA’s to discover…
I know several other IBC patients who are triple negative but alot of us are now friends on Facebook…
Hi Trish
i had IBC and was initially told I was triple negative. I was diagnosed in October 2011. Had chemo, mx and rads. Tests on bits removed a during op showed some hormones receptors so not sure if the still class mine as triple negative or not now. I have no family history of bc so can’t help on that front. I hope your treatment goes well.
Hi, weme and rhapsodyangel, I live in New Zealand and its nice to hear there are other IBC out there. Although I have met a lot of people with breast cancer I have yet to talk with someone with IBC. I think the thing that scares me most is being triple negative and not being able to have the other drugs available to others. However, chemo seems to have gone well and I read that trip neg does usually respond well to chemo. I hope you are both doing well. We are going away for a couple of days on a train trip before I have surgery and I am really looking forward to it. Great to ge a break from cooking lol.