ILC - The Odd One Out?

SoCal and Genny,  so,sorry you are going through this.  I was DX at 50, always had normal mammos.  I found my lump when I noticed a small dimpling.  Based on US they thought tumor was 2 cm, but when it was removed it was actually 3.5 cm.  I opted for a double mastectomy and have no regrets.  They did no MRIs for me, but I think because I went for BMX.  They did do a bone scan and CAT scan.  The waiting for test results and a plan is the worst.  A Xanax script is not a bad idea.

Dear SoCalMom71,

Sorry you find yourself here, but we are a supportive group who have all been in your place, recently diagnosed, and we all know how scary and shocking it is. Know that once you have a plan, it will get easier. ILC is known to be slow growing; try to focus on the less scary side of all of this. 

Your dr may have a good reason for foregoing in MRI but you may want to be sure. My 2 cm tumor was found during a routine mammogram and confirmed on an ultrasound on the same day. I had always had dense breasts. A follow up MRI found another smaller 9mm tumor on the other side of the same breast, my left one This tumor wasn't seen on the mammogram or the US. My right breast has always been clear, on mammograms, ultrasounds and MRI's since. I had a unimx. Not an easy decision, to keep one breast when you're that panicked and you're reading everywhere that ILC tends to be contralateral. My surgeon was adamantly opposed to doing a prophylactic mx on the healthy right breast and I listened to him. It has been 3.5 years since, and though I do sweat the yearly scans (mammogram and MRI alternating every 6 months) I am grateful to still have one of my breasts.The thinking is that since I am being watched so closely, that we will be able to catch anything early. I know that many others have had bmx and I totally understand that decision, too. I did have an oopherectomy (ovaries rremoved) and that has actually given me more peace of mind than I think removing the second breast would have. Didn't have CT or pet scans at time of dx, but I did have the oncotype test. Good luck.

I think you should have a MRI just to give you a little peace of mind about your other breast.  Going through a mastectomy twice would be really tough.

I had a large lump that I found 3 months after mammogram and GYN examination.  I had dense breasts as well.    The MRI showed a cyst in my other breast that my surgeon was sure was nothing but thought it should be biopsied. It was a small IDC.  I chose a double MX after which another very small ILC was found in the same breast as the IDC.  I was 62 when diagnosed, but chose hormone replacement therapy which of course made all tumors grow faster.  My choice was pretty easy.  I would think that an MRI would really help with your choice.

I know this stage is tough, especially at your age. Good luck.

Random information shared by my oncologist at my regular 3 month check up last week:  she looked at my labs and said "I see you had mild hyperplasia in your 'good' breast...good thing you got a BMX because we are finding out that even mild lobular hyperplasia is more dangerous than we originally thought"...

Interesting.  Apparently when they say hyperplasia isn't "cancer", jsut "pre cancer", it has more of a tendency to develop into cancer than doctors thought.  So I'm so glad I got rid of both breasts.  This hyperplasia didn't show up on any scan. At all. and in my good breast, not the bad one.

Claire

I too had ALH in my prophy side....when I came home from my bilat (2 days post surgery), my BS called with my pathology and she told me that it was a good thing that I had the bilat as I would be going down this road again...so from her perspective the ALH would turn in BC!!!  March 1st will be 8 since since my bilat and I've never regretted doing the bilat!!!

hyperplasia also

Ok, so I know we've added lots of our stats about ILC, but can I ask for info on one more? Some of the research on ILC suggests epigenetic changes and coupled with the apparent increase in ILC in the past few decades, I'm curious about the age of our mothers and grandmothers at the birth of their daughters. So:

Grandmother's age at mother's birth: 46

Mother's age at my birth: 33

Just curious to see if we're born to older moms compared to average. My mom's two older (way older) sisters had no BC troubles at all and my mom was a menopause baby.

lojo, my grandmother had my mother at age 28

My mother was 36 when I was born  -- no history of cancer in her family that I know of 

My daughter is an "old egg" of an "old egg" -- I was 35 when she was born

Long generations in my family -- my daughter was born in 1999, and my grandmother was born in 1899. My grandmother's father fought in the Civil War!  

Nocompromises, I wasn't trying to scare...just sharing a brand new bit of info from my oncologist re: hyperplasia. With my node status and tumor size, I'm glad I had the surgery, but those with different stats may decide differently.

my grandmother had my mom at age 33, but my mom had me when she was 21.  No BC on my moms side at all, but all had dense breasts.  My good breast also had hyperplasia; no regrets here either. 

I don't know the age my grandmother was when she had my mum, they were in the Ukraine and mum came to Australia just after WWII.  My grandmother would have been youngish though.  My mum was 32 when she had me.

hello ladies,

The age is related to the mothers not grandmas or great grandmas, and it is not confined to ILC only, it involves all breast cancers. It has not been proven yet, they believe having a child at a older age makes hormones go crazy in the body which maybe the trigger for BC. My mom had me she was 19, we have no history of breast cancers in our family, however, i was 37 when i had my son. The truth is , they don't know much it's a study among others, and it is listed among many others, hormone replacement therapies, pills, first periods and what age...etc...personally, i don't want to know really why i got cancer, because i already got it, i just want to beat it... Don't you? 

My grandmother was 23 when she had my mother....my mother was turning 20 when she had my brother and 21 when she had me.  I had my oldest daughter 5 days before my 30th birthday.  This was after 2 confirmed miscarriages (and possibly a 3rd)....had my son at 33 and my younger daughter after 2 more miscarriages at going on 42.  Took progesterone to maintain pregnancies... I am the first person in my family to have breast cancer....at least on my mother's side...don't know my paternal side.... 

Hi Lojo,

I am in no way offended , it is just when i first was dxd the doc asked so many questions among them when did i bear my first child , and when did i get my first period , the others were life style questions. I got my period at 10 which is very early, which means in medical terms that my body was exposed for too long to estrogen. I never talked about this at home from fear that my son hears by mistake that his late birth may have caused me cancer. I do not believe that personally. All the old generations around me had a lot of children at a young age but since they were not so aware of birth control most of them got children after the age of 40 some of them around menaupose and none of these children got cancer. I am just as curious as you when it comes to cancer, and i have been searching for three years till a point my oncologist now talk to me like a collegue they don't smear the truth anymore. Then i realized the more you look and try to understand the more stress and unanswered questions you get. This is a downer to me. So I stopped i just check treatments and options so i get to choose my own destiny. I hope i am not offending you , it is not meant that way.to me the increase of cancer around the workd is directly related to our century, the stress in which we live in, whether social or otherwise and also to everything genetically ulterred they feed us, the medications for different diseases they tested on us and the list can go on and on. Cancer is the disease of this century unfortunately for us. But still i will not give up to fight it. As long as we have options and choices i think we will make it...big hugs

Re MRIS: I never had one till I mentioned it to my oncologist post-tx. I was trying to decide between a bmx or not. We got my first breast MRI which showed nothing (apparently it doesn't show hyperplasia) and I talked to the radiologist afterward. He told me that ILC women with dense breasts should ask for an MRI always instead of anything else.  He siad it was the gold standard.  However, even that didn't catch my hyperplasia, which showed up post BMX in the pathology report. 

My mother had me when she was 28, I had my only child at 23.  FWIW.  She has dense breasts still at 84.  

At my last check up last friday my liver enzymes were slightly elevated meaning I have to be retested tomorrow or monday, and I'm freaking freaking out.  Can't really do anything other than take xanax and stay busy. Support would be great here!

I have a great relationship with my GP, and she supports me in giving me low dose (.25 mg) xanax since she knows I won't abuse it.