Hi
I have been told by my onc, who is not keen to biopsy my peritoneal mets, that part of the reason for the reluctance is that lobular breast carcinoma (which was the pathology of my breast tumour) is rarely Her2+ and he can therefore assume that my mets (bone, peritoneum and omentum) will also be lobular and Her2-. I had not heard of this connection between lobular pathology and Her2 status. Has anyone else knowledge of or experience with this issue? Any thoughts appreciated.
ShelleyAnn
X
Hi ShelleyAnn,
Whilst it is nice to think I am rare LOL, I suspect there are a few others out there as well. My bc (certainly 2 separate primary tumours a few years apart) is HER2+++.
Dawn
Dear ShelleyAnn
I had localised advanced lobular BC. My oncologist said just after my surgery that lobular is almost always ER+, PR+ and HER2-. I remember reading somewhere on this site that someone with lobular was ER- and PR- (she didn’t mention her HER2 status) so it does happen but my understanding is that it is quite rare.
I hope you find that helpful.
Jeannie
LOL I am getting rarer by the day!! Am also er/pr negative as well as her2 positive.
Dawn
xx
Thanks Jeannie and Dawn.
Have you had herceptin Dawn and if so do you think it is/was helpful to you?
ShelleyAnn
X
Hi ShelleyAnn,
I have had herceptin for over 5 years now every 3 weeks. When I had exhausted all available chemos at that time it was herceptin that worked for me and has gone on working these past 5 years. If only that had been around when I was first diagnosed I suspect I would not have had to have all that treatment over the years.
The sad thing is that this drug does not work for everyone who is HER2+
Dawn
xx
Hi all
An update - saw my oncologist today and we have agreed that if my mid chemo scan suggest that the chemo is not working I will discuss image guided biopsy or surgical biopsy of my peritoneum with the radiologist and the surgeon. I am pleased that this has been agreed but fingers crossed that the chemo is working…
ShelleyAnn
X
Hi ShelleyAnn,
That sounds as if your onc listens to you. I would say that is a good result 
Dawn
Feel awkward about butting in to the Secondary discussion, but I’m Lobular, ER+/PR+ and HER2+, so you are not alone Dawn!!
sorry to disillusion you alloway but you and I are both alone - in different ways, but not keeping each other company! I am ER-/PR-/HER2+
Dawn
xx
Very interested in this post ShellyAnne as I am ER+PR-and HER2- in my lobular carcinoma. I originally had two primary tumours and one was ductal and HER2+ but this was later found to be not the one that had metasised and my Herceptin was stopped. I found that as soon as the Herceptin treatment stopped my tumours started to grow again although my oncologist insists that it must be down to the steroids or co-incidence. Was your original tumour biopsied and found to be HER2-?
Pat
Hi Pat
Yes I had a mastectomy for my most recent right breast tumour in April 2008 when the bone mets were discovered and the pathology was lobular ER+PR+ and Her2-. The pathology from my left breast tumour in 2001 was ductal but also ER+PR+. I dont thing they were testing Her2 status at that point? My left lumpectomy in 1994 was also ER+ and PR+.
How did your medics know that it was the lobular CA which metastasised? Did you have a biopsy of the mets? Is your onc not prepared to discuss restarting the Herceptin?
ShelleyAnn
X
Hmmm - interesting thread - my locally advanced lobular tumour was ER+ PR+ and HER+++ - long before the days of Herceptin.
Hi ShelleyAnne
Yes I did have a biopsy done on my neck, and no he won’t consider restarting the herceptin, although he would be prepared to do another biopsy if I insisted…
Pat
I was dx with lobular HER2+ and PR+ in Feb 08. Currently having Herceptin. Had multifocal tumours. Told only slightly hormonal and Herceptin making only a 7% difference. Currently having loads of holidays and trying to pack as much in as possible as told HER2 patients usually go on to need more treatment!