hi im new here

im lynda, aged 40 and a  nurse from the UK

was diagnosed aged 37 with ER+ve IDC in R breast in 2006 treated by surgery (WLE and SNB), rads and tamoxifen..... then after complaining of bone pain in R breast in april 09 i was seen by specialist who did bilateral breast exam and said could feel lump but not to be concerned as didnt feel cancerous although got sent for USS.

was told still nothing appeared cancerous but could have annual mammo a month early in may 09 and again had breast exam which was again normal sent for mammo.

4 days later had call to say mammo was suspicious but on L side..... 4 days after that (14th may) went for repeat mammo and USS and biopsy.... radiographer confirmed malignant tumour with appearance of new primary.

on 20th may had biopsy results.... new primary confirmed grade 3 looked approx 1cm. pre op assessment that day and admitted for surgery following day.... WLE and SNB.

10 days later (2nd June) got histology results.... new primary tumour, ER, PR, and HER2 negative, basal cell type IDC with high grade DCIS. tumour 1.9cm extending to 2.5cm including DCIS, 0/1 node although lymphatic invasion present in margins.

pretty devastated at first about TNBC Dx but starting to come to terms with it.

plan now is for E-CMF for next 7 month followed by rads... to stop tamox whilst having chemo and restart when finished.

still really peed off though.... its bloody unfair to get BC once even worse to get it twice :(

had a genetic test 3 years ago for a reserch trial for ? brca3 showed neagtive to brca 1 and 2... getting re-referred as consultant surgeon and radiographer both think its a genetic mutation.

only family Hx is mum who had IDC at age 57, grade 1, ER +ve, 1.1.cm, no nodes 4 1/2 years ago now well and stil AI meds.

well thats all about me would love to hear from anybody who has similar experience.




Edited by Lulu - Jun 06 2009 at 2:59pm

hi Pam

i think they want me restart the tamoxifen after my treatment as i have only been on it for 3 years and the schedule is usually 5 years so i think iv to go back on it for another 2 years.

the basal thing did worry me too as i have done a lot of researching in the last couple of weeks since id found out my histology and it does appear that there is an increased link with genetics with younger women, with triple neg women, and with basal cell type cancers.

somebody on a uk website thought that perhaps when i was in the trial it wasnt as intensive as it would be if it was aproper gentic test so may have been a false negative.

i guess time will tell

thanks for your message though xxxx

thanks for the link steve

unfortunately i dont live near the royal marsden where she practices however often trials run from more than one site so perhaps there is a link with her work in edinburgh....... if i find out more ill keep you posted