Interesting thread. I am Her 2 + and Oestregen + diagnosed last August aged 49. Had WLE, chemo, rads and now on Letrozole and Herceptin (15 down with 3 to go). Letrozole due to being post menopausal as had hysterectomy with ovaries removed 10 years ago. I am doing ok, back at work full time since June. Achy joints and tired at times, but so glad last year over.
Did know that only 1 in 5 were Her 2 + but never indicated to me that being both were rare. They were more concerned about the Her2 + due to the aggressive nature of this type of BC.
Keen to hear from others who are further down the line. Take care all. J.
I was diagnosed age 37 in dec 2005 - Her2+, ER 7/8 and PR 6/8, had 4 fec. 4 tax, 18 herceptin + finished 5 years of tamoxifen = so far all good and classed as fit with no evidence of disease - this is with 8cm tumour (very, very fast growing) and 15/20 nodes with high level 2 involvement, my onc was always more worried re her2 + nodes, as tamoxifen already proven good track record but info still quite new on tax and herceptin, currently enjoying treatment free time and having further tests to determine exact menapause status at age 43 to find out if further hormone options available.
always knew my results were out of the norm as 2005 tax and herceptin were not licensed for primary by NICE and i was granted special funding while other woman were taking the same trust to court and paying private, I was told not to mention in the chemo suite and sometimes moved to the bed section, I think mainly more to protect me as they were quite verbal and questioning more to help their defense.
Good luck to all newbies, double or triple+ is a long haul of treatment - and at times the side effects mingle and get quite fuzzy, its not easy but do-able the there are days when it is the last thing on your mind.
Thanks for the replies! I am just very interested in what the outcomes of this diagnosis and treatment schedule are as I’m coming to the end of my herceptin and about to walk into the future armed with tamoxifen and an oncologist who says he has no idea! I am just one of these people who like facts and am a prefer to know rather than a prefer not to…and I’d like to know if as a group we are more prone to recurrances/secondaries etc…but cannot get any info. What I do know is that rather than being seen on a yearly basis I’m on 4 month monitoring…hmmmm
I found out last week that im also HER2+, already knew i was er+.
had my lumpectomy on 19 oct and still waiting for onc appointment to find out what im going to be doing…this is the scariest bit - not knowing! im so stressed all the time! im also 40.
Lostinfrsnce - its been 2 1/2 years since I finished herceptin which I started along with tax.I am on arimidex now. I’m still seen 6 monthly - onc and bc surgeon alternate so I see each once a year. For a year it was a six month leapfrog so i saw someone every 3 months, so I think your 4 months is quite normal. Mo
According the herceptin website all her2+ ER- are high risk, but not all her2+ ER+… Her2+ ER+ is only high risk if combined with other factors. Eg it’s over 2cms, you were under 35 at diagnosis or tumour was grade 2 or 3 or anybody with positive nodes… This is in relation to actually needing herceptin… A grade 1, 1cm her2+ tumour with neg nodes diagnosed at 39 wouldn’t benefit from herceptin…
In high risk patients herceptin levels the playing field… So your risk of recurrence becomes equal to that of somebody who is low risk Eg her+ but not requiring herceptin or her2 neg hormone positive.
Obviously your own individual pathology and circumstances will have a bearing on the outcome.
Thanks Lulu…makes loads of sense! My daughter was a 1cm surrounded by dcis grade 2 her2+ er+ diagnosed at 26
Mine was 1.9cm grade 3, 1 node, her2+ er+ diagnosed at 49
We have both had herceptin and its good to know it levels the playing field xx
I was diagnosed in May at the age of 30, 17mm grade 3 tumor no node involvement.
I’m Her2+, ER+ and PR+ …my onc did actually put in my diagnosis letter that it was unusual and of uncertain significance…I always thought that I was a bit odd and now that’s been medically confirmed lol
I’m triple positive - HER2+++, Er+ 6/8, Pr+ 4/8. Had 13mm grade 3 IDC, negative nodes, with bits of DCIS and LCIS knocking around near the tumour as well, though they only discovered the LCIS when they went back in to get clear margins after they found the extra DCIS at the lumpectomy.
I suppose it’s a bit like the number of people who are left-handed and have blue eyes and brown hair. Left-handedness is much less than 50%, so combine that with the other two and you’ll end up with a very small percentage of the population. I wouldn’t have thought the combination is particularly extra-horrible, even if the hormone therapy is.
I’d also heard that Herceptin puts us HER2+ ladies back on the same level as regular ER+ people (and I’m trying desparately to ignore all the posts about recurrence that just happened to appear around the time of my HER2+ diagnosis).