recently diagnosed advice or at least info

lovemydoggies

Hello all I am a 50 year old  recently diagnosed with invasive lobular carsinoma of the left breast. have had all the scans etc done all look good , except the MRI . I have a 2.5 x 2 cm tumor. Also the MRi says there are at least 3 intrammammary lymph nodes in the outer and deep portions of the  breast, also additional ones identified in left axillary region I am also ER-PR positive and Her2nu negative. I have surgery scheduled for Dec. 13th But with this new info not sure if I am making the right decission.Also not sure on follow up say radiation chemo hormone therapy as will not know till after surgery and path studies are done. Oh also was told the grade 2 but not sure if that changes with new path reports after surgery.I was diagnosed  Oct 29 of this year after a mamogram, ultra sound and the needle core biopsey. I have read all of your posts and my heart goes out to all of you and you are all in my prayes. And yes sorry I had to join your club, but now a life time member. You give much advice and comfort  but I rarely see anyone on here with invasive lobular. Just read on another site that if intammammary nodes have mets it appears to be a prodictor of poor outcome. Heck I was tring to have a some what positive attitude but now  I am terrified. NO more terrified now. Any advice or similar situations  please respond. You are all wonderful !!! Thank you in advance for any and all info. Scared is an understatement, I want to live for another 50 years.

lovemydoggies

Is it no one answers because no one with this type of cancer is still around to answer? Wow really  feeling bad now.  I'm sorry ladies just haven't been doing well and mu hubby of 7 months is in worse shape than me. Think I need to go see a shrink. . Bless you all! I wish only the best for all of you  keep me in your prayers  as I will all of you in mine.

JoelKM

You definitely have to have this removed. Since to have positive nodes, the chemotherapy will be very important. Being ER- means that you won't have longterm endocrine therapy to worry about. The mortality ratein the short term is higher with ER negative BC but the long term outlook past 5 years is very good. I have a friend whose wife has had lobular cancer for quite some time and she's doing very well.

PSK07

Hi, so sorry you had to join the club no one wants to be a member of. 

If you go down the topics page a bit there's a section on ILC.  I'm sure the ladies there will have lots of advice and support for you.

Take care of yourself. ((hugs))

Beesie

lovemydoggies,

Since none of us here are doctors, I generally try to respond to posts only when I have related personal experience so that I can share that experience and share what I've learned about a condition that I have.  I usually don't respond when I don't have personal experience to draw upon.  So since I don't have ILC, I wouldn't normally respond to your post.  However I've noticed that so far, no one with ILC experience has come by.  As Pam suggested, the best idea is for you to go to the ILC discussion forum, further down on this board.  You can find it in the "Connecting with Others Who Have a Similar Diagnosis" section; it's the 4th topic on the list.  There are women there who will be glad to share their experiences with you.

I also checked out a few websites that might help you with information about ILC:

http://www.virtualcancercentre.com/diseases.asp?did=675

http://www.breastcancercare.org.uk/content.php?page_id=3990

Shirlann

Hi dear, you show no evidence of Metastases, that is "mets", so stop worrying about that. If it ever happened, it would be way down the road, and will most likely never happen.



I would get Dr. Susan Love's Breast Book, I don't think ILC is rare, I had Medullary breast cancer, which only 5% of the breast cancers are this type. (clumsy sentence, sorry). But that doesn't mean much.

With Dr. Love's Book, just read as far as you need to, the later chapters you will never use and they will just scare you. Take a small tape recorder so you don't have to take notes.



If all your scans and other tests came out good, then forget Mets. That is what mets are, cancer that has gone elsewhere. I presume, with multi-focal cancer, you will have a mastectomy? Sounds right, then chemo and radiation. You probably will have hormone therapy, because you are ER+ & PR +, this is a good thing, but happens later, when all the other treatment is over. But in any case, this is waaay down the road, don't worry about this part now.



This stupid disease is done in stages, which drives us all to drink. Slowly they move through the series of tests, treatment options are discussed, and you slowly go nuts. But when the whole picture becomes clear, all of it makes a lot more sense. Sounds to me like you have a good diagnostic team. Many of your worries they will answer eventually. Just have to play the waiting game and see what turns up.



I am 9 years post treatment, am ER and PR Negative, am doing fine and almost went crazy with the slow, step by step "dance" that breast cancer requires. Do remember that MOST, not all, but MOST breast cancers when large enough to be found by any means are 8 to 12 years old. So a panicky rush is not the way to go.



So what part of the recommendations so far are you reconsidering? I am just curious.



Gentle hugs, Shirlann

golfer779

Bravo Shirlann, after reading "lovemydoggies" post I wanted to say something, then low and behold I get to your post with the words we all should hear when this is so new and scary.

I too have loblular cancer, but other than its harder to detect its not a whole lot different then ductal cancer when it comes to treatment plans, so I've been told by my oncologists.

A true test of patience is what I find is needed, I am also waiting for my recommendation since having a mast and s/node biopsy done 8 Nov.  I'm personally not much of a pill taker (maybe an advil once in a blue moon), but you may want to ask about something for anxiety.  I take .5mg of Lorazepam every now and then or at bedtime when my mind decides to go 100 mph.

We'll all get through this, Carol

Shirlann

Yes we will, Carol, and you are wise to take something when the squirrels start running around the ceiling of your bedroom. Those darn squirrels are everywhere. The (NO SLEEP) squirrels.



I took something on the days of treatments and procedures too. Just helps to get up, get dressed, try to carry on a semblance of your life, and get all this done on top of everything else. And we thought we were busy?



You have the right attitude. Resigned disgust. Perfect. That is where we all eventually get to.



But with so many women recovered, it will be you too. Promise.



Gentle hugs, Shirlann

golfer779

Shirlann - oh great, now I'll be waiting for a squirrel to drop from the ceiling fan in the bedroom!!!!!  I agree with a little help during procedure time, I asked about taking an anxiety pill the morning of surgery day and was recommended to take it with as little water as possible that morning.  I've been pretty lucky that its just at night when my mind starts a racing and needs to be put in neutral!!!  Carol

alexis39

Hi there, not sure if you are still on the forum but just wanted to check on your status. I too have been diagnosed with invasive lobular carsimona and am trying to read up as much as I can on what to expect.

Kicks

This is a very old thread that has not been posted on since 2007. You will probably get more replies if you start a new thread in the ILC forum.