The most normal spread of ILC? % recurrence in other breast?

I'm so sorry you're going through that.  Let's just hope that such aggressive treatment did the job in ridding you of bc.  And hopefully you can regain your range of motion with physical therapy.

Lily, my plastic surgeon and others at UCLA (Los Angeles) are absolute miracle workers, rebuilding faces for severely injured soldiers (who have often been burned along with other injuries) with a project called Operation Mend.  And I know there's a fabulous center in New Orleans (NOLA) where they are equally as talented at difficult reconstructions.  Perhaps you could set a goal to at least get an opinion from someone of that caliber after your physical therapy?  It's just a thought, and I would be happy to put you in touch with my PS, so that you could at least email him some photos, if you're interested.     (((Hugs)))  Deanna

And here are a couple of research articles I've just pulled up on ILC that should be reassuring:

http://jco.ascopubs.org/content/26/18/3006.long   (An excellent, in-depth explanation of the differences, including pointing out that ILC is perhaps more problematic when it's also ER-.)

http://www.ncbi.nlm.nih.gov/pubmed/17760669    ("There was no prognostic difference between IDC and ILC.")

Unfortunately, sometimes both good information and bad can be misunderstood and/or grossly exaggerated as it's repeated. 

Deanna

Deanna, sounds like you have a fantastic medical team. I have been discharged from all follow up but I have open access. My BS just said if I have any concerns I can be seen very quickly. His take is as I was node negative my prognosis is excellent and doesn't warrant formal follow up. I agree wholeheartedly what you said about recovering after treatment. It does take time and you have to be kind to yourself.

Lily, you can help protect your bones by exercising and taking D, calcium and magnesium. Yoga, pilates, weight training are all good bone-protecting exercise, but even fast walking is helpful.

I should add that I drink very little alcohol, and have decided to avoid it altogether starting this year. ILC and alcohol don't mix, it seems.

Lily, here's a recap of a 2010 study that makes the distinction between alcohol use with IDC vs. ILC: http://www.medpagetoday.com/HematologyOncology/BreastCancer/21853   Perhaps Claire has another one.

This was a restrospective study -- in other words, they extracted data from previous studies, which some would argue may not make it as accurate as one designed specifically to determine this information.  But it's absolutely influenced my habits, which have gone from an occasional glass of wine to maybe 1 every 6 mos.  But like everything else, we each have to decide what changes we feel are most important for us, and that we can live with and not feel overly deprived or miserable, which isn't good for our mental health!  

And here's another bit of research I just pulled up on the subject of alcohol & breast cancer that makes a distinction between pre & post menopausal women:  http://www.medscape.com/viewarticle/727885

Deanna

They way I understand the ILC/alcohol thing in plain english--ILC is driven by estrogen, more than other subsets of BC.  Alcohol increases our estrogen levels.  Estrogen is stored in fat cells.  BC cells can stored estrogen and grow. Why give those possible cells more fuel for the gas tank?  Like Deanna, I have sworn off alcohol for the most part. If I have a recurrence, I don't want to hate myself because I couldn't keep my alcohol intake at a minimum.  I've also found that the less I drink, the easier it is to keep weight off, another plus.  

My MO told me late last year that three glasses of red (not white) wine per week (and not all at once) would be safe, as there is some evidence that occasional red wine can protect against BC.  But I think it's what's in the wine, which you can get from grape juice also, that is helpful, not the wine itself.  

Anyway. Here's the latest in a long argument about whether we should or shouldn't drink.  And keep in mind that these studies don't seem to isolate our kind of BC from the most common one, IDC, which makes a big difference as to what we choose to do and not do to protect ourselves.  We are a different sub-set.

http://www.theatlantic.com/health/archive/2012/01/the-truth-about-breast-cancer-and-drinking-red-wine-or-any-alcohol/251171/

Claire

Hi_ just seeking out if there is anyone who is experiencing neurological symptoms (sharp prickly type pain, tingly and numbness. All has happened in my scalp,feet, leg, fingers, shoulder blade.? I also have pain in my left shoulder blade at times and under my left clavical that comes on by its own. When pressing on the area it has stronger pain..? My oc said dont touch area and try to forget about everything. He said I "detected my ILC early" Quit thinking!!  But its hard when you feel this EVERYDAY! Am I over acting? Anybody?

Over-reacting?  Ha.  I worry, at times, about every ache and pain.  My right fingers seem to fall asleep (tingle) a lot more now...that is the side I had my lumpectomy and rads on.  Luckily it doesn't last because it happens only when I sleep on that side, and corrects pretty quickly when I roll over. 

Right now I have some intermittent hip pain that I'll have to mention to my MO tomorrow. I'm afraid to, and I think it's simply overuse (it happened all at once when I was at the gym last Tuesday, running and lifting weights) and only hurts when I walk on it so it's most likely bursitis or tendonitis...I think bone mets are different--pain lasts no matter what you do, and it feels "different". This is a sharp pain that happens when I step down on that side. But you see where my mind headed immediately after I felt it.

You are normal. I think it takes years to leave behind the hypersensitivity about our bodies and their messages, at least for most of us post BCers.

Claire

I was stage iv ilc from the beginning , in my bones like 7 places...  and in lymph nodes up to my neck... er/pr +

had no surgery as was stage iv... been on Femara (generic) almost two years , ned about a year and a half .. now my tumor markers were 34, last month shot up to 70 and this month 121.9  !!!  ONC did not feel anything on exam and I dont have any pains etc.. scheduled for PET scan next Friday  scared to death all over again.

I am overweight and lost 19 lbs but now 6 months later I gained it back .... onc said lets see whats going on with pet and maybe switch to Arimedix ..  I just dunno...