Lobular and HER2 Hi Staffy
It’s Jeannie here and I’m sending you a quick response before going off on hols.
I was tested for HER2. I was negative. My understanding on this is that because lobular is almost always ER+ and PR+ it is unlikely to be HER2+. I have also read this somewhere.
I hope that is helpful to you.
Regards to all.
Jeannie
Lobular and HER2 Hi Staffy
Just confirming what Jeannie said. I was also HER2-, but ER+ and PR+. I think my oncologist told me the same thing, that ILC is unlikely to be HER2+. I think it’s because ILC usually have hormone receptors, and interestingly the women that have this are usually older.
If you go to breastcancer.org and check out the ILC section of the discussion forums, you will find heaps of interesting information on recent research and treatment options. These ladies are VERY well informed!
Good luck with everything and keep us informed on how you are going.
A x
I too am HER2 - and ER/PR+. I was told too that the Lobular and the status just given was usual for my age. I was 32 last Nov when diagnosed
Thanks for your replies Seems that we have all pretty much been given the same info. then.
I have been reading the breastcancer.org site as you say they are very well informed.
I was also told by an oncologist at the younger womens forum that recurrances of lobular b.c. can appear in places that ductal doesn’t.
Such as gastric sites and ovaries. Two years on from diagnosis and I still find myself searching for info. that relates particulary to lobular b.c. and it’s not that easy.
Thanks again
Kim
P.S. Have a good holiday Jeannie
Invasive Lobular I have only just come across this thread. I too have I Lobular.
All I had was a slightly raised area of skin on the left breast. I watched & wondered for a few months but finally saw a woman GP who said she could feel nothing but sent me for tests.
After 6 weeks of back and forth , mammo, Ultrasound & scan guided core biopsy, and from a tiny patch of puffiness, it turned out I had Invasive Lobular, Invasive Ductal, Mucinous Carcinoma & widespread DCIS in BOTH breasts!
I didnt even find out about the multiiple types till a couple of years ago when the Onc told me.
It really brings home that its not just lumps you need to be wary of.
Welcome to our, not very exclusive club Biggypop46. Though from reading your post you could qualify for membership of ALL the clubs on the forum.
Breast cancer is soooooo sneaky, and manifests itself in numerous shapes and sizes. I tell everyone I know (and some I don’t) not to leave anything to chance.
I see from your profile you were diagnosed in 2001, so that must give hope to lots of others with multiples.
Hope you are travelling well.
AW x
Hi All,
I was diagnosed with ILC in March this year (I’m 47). What amazed me was that I had had 2 friends diagnosed with breast cancer in the previous 6 months and had been vigilant about self examination. Yet this snuck up on me out of nowhere and the first I knew of it was pain and thickening in L breast for about 3 weeks then I noticed the skin seemed to have an orange peel texture. My GP referred me urgently and I was told by consultant a week later that it was ILC.
When I said to her how could this happen she said that it is the nature of ILC, it can be very difficult to detect until a response within the body makes it “harden” enough to be palpable, I felt that I had somehow been negligent but she was very reassuring that this was not the case. I had a mastectomy and ANC with 9 nodes positive so this had obviously been there some time! I’m also ER/PR++ and her2neg.
Interesting thread.
Take care
Claire x
Another ILC My ILC was not picked up as a result of my routine mammogram - as such. There were two microscopic microcalcifications in an area about .25 of the size of my little fingernail and I was recalled for investigation. They magnified the area of concern and decided to do a biopsy because the pattern of microcalcification was so small as to be inconclusive. That’s when they discovered that I had Invasive Lobular - Grade 2. MIne turned out to be multifocal and they suspect that it would have merged into a palpable lump eventually so I am very grateful to the radiologist for their vigilance.
I had a mast/recon and had no lymph node involvement - because they said it was caught very early. I also had an MRI scan to see if there was any evidence in the other breast. I did ask my surgeon whether I should consider a biltateral mastectomy because of the increased risk of bilateral lesions but he said that there has been research indicating that there is only a very slightly higher risk of further primaries in the other breast. I also asked about having MRI scans instead of mammos as ILC tends not to show up on mammos - apparently it mimics normal breast tissue - and he said that the problem with MRIs is that they don’t show up carcinoma in situ, only invasive.
The nurses at the clinic did say that everyone is conditioned to look for lumps but that more should be done to raise awareness about this sneaky type - often not palpable, not showing up on mammos, difficult to dx.
Anne
xx
me too hi amazonwoman,
i,m another invasive lobular lady, i was diagnosed on the 6.6.6
for years i always had painful breasts which i always put down to hormones as i suffered with endometriosis for 20 years
at the end of april i noticed a small lump in my breast and waited a few weeks before seeing my gp, when i saw him he too felt the lump and sent me to the breast clinic, he believes any lump is suspious until proven otherwise
At the clinic i had a mammogam, ultrusound and biopsy which showed ilc my consultant explained about ilc mimicking breast tissue so sent me for a mri scan which showed a much larger tumour
i had a mastectomy and have started ec chemo and will have rads and tamoxifen but the oncologist keeps mentioning herceptin so now i,m confused after reading the posts on here could i be er+ and her2+
all my nodes came back clear
After reading some of the posts im so pleased with the response of both my gp and consultant
Take care
Hi mizzmc Is your oncologist waiting for the results of the HER2 status or are those results back.? As I understand it you only get herceptin if your b.c was HER2+. It is possible to be er+ and HER2+ but unusual I think for lobular b.c at least that seems to be what the rest of us on this thread have been told.
I also had mastectomy but had an immediate reconstruction. I then had 4AC chemo. but no rads. and I am taking Tamoxifen. I wonder how it’s decided who gets what treatment. Even people with very similar circumstances often get very different treatment.
Hope your’e coping with the chemo. I am guessing you are coming up for the second one good luck it’s not very pleasant (understatement) but it is do-able.
Take care
Kim
P.S. great news having clear nodes.
hi staffy i,m still waiting on the results of the her2 status, so perhaos i will be ok and not need herceptin
i see the oncologist on the 12/9 so hopefully i will find out then
chemo is going ok will be glad when it is all over
had trouble with my hickman line at yesterdays chemo session but luckyly thet found a vein to use so still had chemo
had a xray this am and myline is flushing ok so hopefully all will be ok
take care
ILC missed I had DCIS Grade 3 in December 2005. While undergoing Radiotherapy in Feb 2006 I found an area of thickening in the other breast. I went straight to my Breast Care nurse who felt it too and said to see the Radiology Consultant. She also found it and booked an appointment for an ultrasound.
The ultrasound man told me that what I felt was a cyst and that there was another smaller cyst to the right.
I was so relieved I never asked for a second opinion.
6 months later my follow up mammogram showed an area of thickening and an MRI showed up the second tumour as well. Both were invasive lobular cancers 3 cms and 4 mm
Since they are in exactly the same area as the “cysts” it seems highly coincidental!
I wish I had gone back to my surgeon who is a very, very careful man and asked if he would do a fine needle biopsy just to reassure me.
I’m not going to complain to the hospital because I think I will get too worked up and it won’t do me any good physically.
My message is - get it double checked. ILC is so sneaky.
By the way FISH showed mine to be her2 pos.
triple negative I was diagnosed in Feb 2006 with ILC - it seemed to come from out of nowhere but after my mastecomy I was told that 14 out of 20 nodes were affected. I’m ER-. PR- and HER- and was 43 at dx.
Sue