finding those sneaky mets

thanks for this conversation--- I am almost 3.5 years out-- and in general feeling great--but then I have a cramp or my hip hurts and I really start to wonder....... I know in the past, there are things I would ignore, and I try to do the same now.... I know my risk of recurrence is low, I am on AI's and lupron, did chemo and radiation---there really is nothing more that I could do to prevent a recurrence... and yet..... sigh.  

It is good to know that there might be studies about ILC_-I am always reluctant to do any sort of internet search because information is so old.  

My onc, who is great, is really not worried about any recurrence--- an annual mammo, MRI, bone density, etc. is all she needs.  As with most, it is about possible symptoms reported from me... and up until now, other than the hip pain, which has been identified as related to a disc, there really no symptoms, so I don' t want to go looking........

My mom's ILC was VERY hard to detect.  Luckily (???), she had a very rare metastasis to the uterus which caused abnormal bleeding.  Even knowing that the cancer was there (through a D&C), it still didn't show up on a PET/CT.  ILC is so very sneaky.

HI, I've been off the board for awhile but i am back. Have a few ? for anyone...

I was diagnosed 8/2010 ILC left breast/ area 10 o'clock. Stage 1.

I've have joint pain due to Arimidex. I started having bone pain about 6 mo ago and they chaulked it up to the RX. I've had blood in my urine for about a yr now. Can't get in to Urologist til July. The last 3 wks I've had sharp pains in my bone, pretty much all over, knee,top of feet, forearm back shoulder. Pain in the rt flank area. push on my pelvic bone(side and towards the back) it hurt, but also hurts on it's own at times. I have a very tender spot on left colar bone area(the side of my ILC) sharp pain at times. It feels like the pain that brought me to "rule out" the biopsy of my ILC.  I had a bone scan and MRI of my head only(headaches). Haven't heard back yet but the tech said he thought all looked good. What could be going on. The pain is real. ?????  Anyone?

Thanks Lynda, the bone pain is a concern but more the collarbone area. I will be persistant. Sometimes I wonder if oncologist forget how sneaky cancer, mine being ILC, can be.

I've been having collarbone pain too, although not consistently. It has made me think something is going on. I didn't get it until after I stopped using Arimidex. It isn't a daily pain though. Best to get it checked out.

Hugs 

Omg.... this is so scary

The pain right below my collarbone is sometimes "stingy" it gets my attention. There is also some thickening in the area- and an area close to inside of my arm. When I press on it, it hurts. Is this how others with collarbone pain behaves? Does fat necosis have pain? You would think the other side would be the same.?  My PCP said to keep a 2 week journal and if still the same, we would address it further. She could also feel the thickening.I see my Breast care specialist in Sept/ she will probably do an ultasound. I've had this for months. The only diff. is I feel the pain everyday now.

Being new to this, is ILC more likely to return or metatasize than other cancers? I was diagnosed 7/16/12 and have bilateral mastectomy with reconstruction scheduled for 8/29/12. was told 1.9 to 3.3 cm (if tail cancerous), ER/PR + HER-, not sure about node involvement until surgery. No real treatment plan in place yet, I was advised against radiation because I have lupus and not sure about chemo. Reality is setting in and starting to get nervous.  Any advice/knowledge would be appreciated.

Thank you Barbe.

Carla 

I may be on the wrong part of this forum but wanted to enlist help of anyone with ILC.  I'm wondering what the symptoms are for ascites of the abdomen and what tests are involved in ruling out mets.  If anyone can answer my question, its appreciated.     

Astrid, yes each type responds differently depending on the receptors - ER PR and HER2 as well as grade. I'm curious as to how ILC could grow in a mastectomy site!! Lobular is like a sheet sort of, if I understand correctly....

Okay, now I'm officially confused. I googled lobular and it grows in the "milk producing glands". If you've had a mastectomy, you shouldn't have any glands left!!! It is hard to find in a mammogram because of the way it grows:

Invasive Lobular Carcinoma (ILC)
Invasive lobular carcinoma develops in the milk-producing glands (lobules)of the breast. ILC has the ability to spread to other parts of the body, (most commonly bone, brain, liver, and lungs) either through the bloodstream or the lymphatic system. ILC usually presents as an abnormal feeling breast (most often a thickening) and not as a hard mass that can be felt. ILC is less likely to show up on a mammogram.

All breast cancers can spread to other parts of the body the same way. That is not exclusive to ILC. But it is a sneaky little bugger, eh??

Hmm, yes, that is a good point..I shouldn't have had any ducts either, but I still had a recurrence of ductal in the left breast..a year later. (2003)

At the time, it was thought highly likely that this was a micro met that was left over in the remaining breast tissue.

My double mast was in 2002. So, 10 years later...I don't know how..maybe an expert will...a lobular cancer appeared. It may also have been there originally, in the right breast, and grew slowly in the remaining breast tissue? They never get every bit of breast tissue, even with a double mast.

It is a good question. Barbe. I'm sure I'm not the only person this has happened to.

Oh, hang on..reading my breast report again....

Microscopic Examination:

Sections show fatty breast stroma containing a few benign ducts and lobules, as well as a nodule of BREgrade 2 invasive lobular carcinoma.(nucei 2, tubules3, mitosis 1.)There is some associated LCIS.

Well, there you have it. We apparently have both ducts and lobules present in any remaing breast tissue post mast.

I did not know that.

Anyway, hopefully this kind of thing does not occur very often for the majority of bi lateral mast. patients.

I'm sure hoping it's the last time it happens for me.

No barbe, unfortunately i could not have a nipple sparing urgery, but i did have the skin sving double mast.

It looked pretty wrinkly and ugly for 8 years til I finally had the recon. :-D

xx

Astrid.

I think we just have to take each day as it comes. Appreciating every little thing, and the people that matter.

Not expecting the worst..no. Always putting life first, and worries second. Do all we can to stave off any future advances, boosting our immune systems, managing stress etc...after that...who can ever know. :-)

The surgeon did not say she thought they missed it originally barbe.

It was the left breast that grew a lump a year later, where they thought it likely.

I assume they think that this lobular just grew in the little remaining breast tissue.

We know now, that ducts and lobules are in fact present in the breast tissue, and we also know that there is always a little left over, even after a mastectomy.

This can occur, but maybe not all that often?

I would hope this doesn't put anyone off from having a double mast. :-)