Pleomorphic ILC - Freaking Out

Racemom, I'm so sorry about the Pleomorphic ILC. It seems the BS is very positive. I don't know much about this kind of ILC, but as I understand it you're more than likely going to get a higher Oncotype number.

I'm sure someone will come along soon who will be able to give you more info. There is a group of ladies who have Pheomorphic ILC that are active on this board.

Don't be sorry you have every right to whine-vent.

My onc told me the PILC is no worse than a Grade 3 IDC.

I'd freaked out when I'd read the PILC literature when first diagnosed as well, but most of it is old, and it's not clear if all PILC is highly aggressive or just the ones that are HER2+. And like Sue said, if you are HER2+, there's Herceptin for that, which wasn't available when most of the studies in the literature were done.

Hi Racemom,

I'm sorry you are going through this nightmare called breastcancer. All your scared feelings are normal. You have found a good place for support in this site-I wish I had known about it when I was first diagnosed. There is a lot of scary (old) info on the net re. pleomorphic ILC-best to leave that alone.

There is a whole thread devoted to Pleomorphic Lobular-there are quite a few of us. Like too much said, the whole pathology picture is taken into account, not just the fact that the cells were pleomorphic. 

I am 2 years out-hang in there, you will have a treatment plan in place soon and will be taking action to get rid of the cancer!

Cat 

Shelley - pleomorphic becomes irrelevant when you are special like you and I. The HER2+ve reading takes over everything else. Thank God for herceptin!!!

Racemom,

I just sent you a private message.

racemom,  Great news about those nodes looking normal on MRI.  This is such a drawn out process, with lots of ups and downs.  Hang in there.  G. 

racemom - My preop MRI showed tumour 2.5cm.  Post op path report said 1.2cm for the main mass extending to 2cm with extensive LCIS 95% outside to 2.5cm.  So the original 2.5cm measurement included the LCIS and my invasive tumour size was officially 2cm. 

The details of your grade score will have a bearing on chemo decision too.  Eg my onc explained that even though my cancer cells were abnormal and so got the pleomorphic description (and a score of 2 which eventually bumped my Elston/Ellis up to Grade 2), the main factor for him when making decisions about chemo was the mitotic score (how fast the cells were dividing).  Mine was only 1 so it was not fast growing and he said chemo would not be very effective for me as it targets fast growing cells.  I chose to go straight onto Hormone Therapy as my cells were very strongly ER90%/PR80% + which meant most of them used estrogen or progesteron as fuel to grow.  The HT drugs either block the estrogen from getting to any rogue cells or by stopping the body from producing estrogen.  The theory is that over 5 years any cells 'hiding' anywhere will shrivel and die when they are starved of estrogen. 

And great news about no nodes and HER2-.

Congratulations on not needing chemo.  I hope the hormones and radiation kick it in the butt and it never returns:)

racemon, congrats in not needing chemo.

I remember well the feeling of walking around knowing I had cancer in breast and just wanting it out.  It sucks.

I had neoadjuvant chemo and was pretty worn down by the time my surgery date came around.  The cancer side was a modified radical which meant the lymph nodes were removed but the right was just a total mast and they didn't touch the nodes.  So my experience is probably different than yours will be.

However, surgery wasn't that bad.  I did take the pain meds (oxycodone) on a regular schedule for the first 3-4 days and then I was able to cut back.  But I still took them for a total of two weeks.  I'm guessing you'll be able to less than that if it's a single with no nodes.  Do what feels right.  I needed them to be able to move freely without pain (specially the left arm) and the sooner you can get moving the better.  The first week was amazing how quickly I started feeling better.  The second week wasn't as dramatic but still felt stronger everyday.  But the third week I felt like I was stalled out in the healing.  My surgeon told me that the chemo was going to slow down the healing process and I think that's what happened. 

I'm going to guess that you'll feel pretty good the third week.  Hopefully someone with a closer situation chimes in.

I saw your post and it so reminded me of myself seven years ago that I felt I had to respond.  I was dx with lobular pleomorphic seven years ago this week.  Lymph node involvement, her2 negative, 2.5 cm.  I totally freaked out when I read all the data as well.  The truth is though that after the chemo, radiation and lumpectomy, I am still here.  I was 44 then, now 51.  I don't know what the future holds but I do know that the data on the studies are ancient and not based in modern medical reality.  Women with more positive lymph nodes than I are doing great many years out.  Just hand tight, do your treatment and I know that years from now you too will be writing a post like this to another finding themselves in this same position.