ILC - The Odd One Out?

my profile --

48 premenopausal at Dx. Began period at 12. Was a social/light smoker (quit for good about 14 months ago, just prior to Dx). Consistent drinker, but have cut down quite a bit. 5'9" weight always in normal BMI range (but now I'm probably at the highest end and am the heaviest I've ever been). Sporadic at exercise but enjoyed good health -- excellent cholesterol, low BP. Have had cycle-related migraines since my 20s. Menstrual cycle was on the short end (avg every 21-25 days). Took longer than I thought I should to get pregnant at age 34. I charted my temps and self-diagnosed that I had a short luteal phase (caused by low progesterone). I took vitex and a few other herbs along with bio identical progesterone cream -- a few months later I was pregnant. Had my one and only child at 35. Breastfed her until she was 3 years old (thought that was a good insurance policy against BC but unfortunately didn't work out that way).

I'm pretty sure my mother didn't take DES. She boasted about having natural childbirths in the late 50s thru 1964 (when I was born), so I doubt she took anything while pregnant. There is no known cancer of any kind in my family. Granted I have a small family (only one uncle on my maternal side, and he had no children -- and two uncles on my father's side, five cousins there). My grandparents were all born in the 1890s, so long generations and not a large sample size for data.

Blood type A+. Dense breasts. Eight "good" annual mammograms before my diagnosis (which was found because I felt a lump and the radiologists had to look very closely before determining there was an architectural distortion on the 3D mammogram -- the lesion showed itself on MRI). My MO said the tumor had probably been growing for five years (but undetected). Also had some LCIS in my pathology report.

I think that's it! Agree that a survey is a great idea.

I was Dx 3 months before turning 50.  First time I was ever called back on a mammo.  Had my first mammo and baseline at 35, then started mammos at 40.  I had a couple years where I skipped mammos cuz I pregnant or breast feeding, but at least 6 mammos in a row before the fateful one. Following mammo, spot compression mammo and ultrasound.....biopsy, MRI and more biopsies.  At time of Dx was told that I was not a candidate for breast conserving surgery as there was two tumors too far apart.  Second biopsy showed cancer in lymph nodes and a 3rd place with cancer.  I interviewed 2 surgeons and they both recommended a bilateral.  It was one of my questions for the surgeons so I was at peace with doing a bilat.  Very good decision as the prophy side came back pre-cancerous.  Had I not done the bilat, I would have had a 2nd primary.  No Hx of breast cancer in my family...I am the history!!!  Tested for BRCA and results are negative.   Bilat with axillary dissection on cancer side, chemo, rads, ooph and AI's. Endured AI's for 3 1/2 years.   Good weight, healthy diet, nursed my kids and on and on of things you are supposed to do!!!  BUT I was at risk because I am female and had boobs!!!!  I still eat healthy, walk daily, maintain a good weight, but enjoy a glass or 2 of wine nightly (didn't really before diagnosis).....My hormones were always out of wack!!!  Several miscarriages, 4 confirmed and a possible 5th...due to luteal phase deficiency....I'm 7 years 10 months out since Dx...I hope to grow old, but I know that the beast can come back at any time!!!  I ignore the statistics...they aren't really good, butI  go on 100%....either the cancer will come back or it won't!!  Its always in the back of my mind, but I don't loose sleep over it.   I'm on 6 month visits with my onc...I stopped seeing my PS and BS (my doing)....and only see my pcp if I'm sick....Had my first child 5 days before my 30th birthday and my last child turning 42!!!   Didn't start my period till age 14 1/2 and was peri-menopausal at time of Dx... chemo put me into chemopause and then I had a shot of Lupron after finishing chemo so I could start AI's then 2 months later had an ooph....lots of fun being thrown into surgical menopause!!!!  Never thought of ILC being the "step child"....

Thanks, Karen!  

Such nice ladies on this thread. Thanks for starting. Quick perusal, and my very unscientific observation is that many of us were very close on either side of 50 when dx. Doesn't seem like the BC for 'older women' that we always read...

Good luck to the ladies in active treatment, and support to those of us on hormonal treatments and done. Happy weekend.

Momine, first I want to thank you so very much for all you do for everyone on these boards.  I just started taking femara 4months ago and I have had a lot of annoying side effects, sleeplessness and joint/muscle pain and stiffness.   The research I did told me that AI was a necessary treatment for me and that femara was the AI of choice for lobular.  The research you posted really solidified my commitment to this drug.  Thanks again.

MsP

Thanks for starting this thread; wish I had seen it sooner. I DO feel like the odd one out, and I feel like my treatment options might be hand-me-downs from my IDC sisters and might not *quite* fit me. But then, there isn't any other treatment, is there?

Me:

Thickened area/lump discovered at 48. Actual diagnosis at 49.

DES daughter? Very possible: my mom had 5 miscarriages before I was born and her doctor referred to me as his "Miracle Baby."  If it got me born, I reckon it was worth it.

Started my periods at age 11.

Paternal great-aunt had breast cancer. Her only sister died of cancer, but we aren't sure if it was breast cancer or not.  

My mother has had both uterine cancer and DCIS. She has no sisters. I have no sisters. So much for family history.

On birth control pills from age 14 :: to age 18, and again from age 20 to age 26.

One and only child born when I was 19 -- 3 months before my 20th birthday, to be specific.

I did NOT breast feed.

Tubal ligation at age 26.

HORRIBLE menstrual cramps and other symptoms most months following tubal ligation, and I do mean I would spend days pretty much bedridden---my periods literally made me sick.

Menstrual cramps & all other symptoms completely eradicated some months simply because I'd remember to drink half a cup of soy milk each day. Yep, that's all it took. I mostly stopped drinking the soy milk after my mom was diagnosed with estrogen positive DCIS and *she* was told to avoid soy.

Was put back on birth control pills VERY briefly at one point in early 30s due to severe menstrual symptoms, but the side effects were WEIRD, so I stopped after one or two months.

Over the past few years a tendency to get sick with *something* just before my period; migraine, low grade fever and sniffles, urinary tract infection, could be anything.

Chubby as a child, less so as a teenager, gained way too much weight while pregnant, lost it slowly after pregnancy, and was at a healthy weight from mid-twenties until age 40. Gained weight in first few years after 40 (cuz i moved in with my now-husband) but held steady after a few years of gaining. Currently 5 feet 5 inches and 175 pounds. 

Blood pressure, cholesterol levels, etc., have always been boringly normal, even after the weight gain. No health issues really at all. Well, until the cancer.

Dyed my hair red for DECADES.

Dedicated lifelong couch potato and computer geek.

Smoked for years. Quit smoking and chewed nicotine gum for years. Went back to cigarettes almost 4 years ago. Doing e-cigarettes now.

Occasional drinker, but never on a regular basis. 

Consumed way more artificial sweetners -- sacharine and nutrasweet -- than any human ought to. Still doing it, too.

More stress than usual over the past few years, ironically due to someone else in the family with cancer.

Was advised by surgeon at get-go that he would not recommend *against* bilateral mastectomy. I was already all for that: Not willing to go through the whole diagnostic nightmare again if taking the other breast would avoid that. Examination of other breast after mastectomy showed this to be a good decision. "It was a mess."  

All I can think of that's relevant...but hell, we don't even know what's relevant, do we?

Have been following this thread with interest, usually during my 60 minute daily lymphedema pump treatment. I can prop my laptop up to read but can't log in or type very easily. May not have time right now to post my full history so here are some highlights:

Diagnosed at 53, perimenopausal. Mom had me when she was young - no DES. I never used OC (oral contraception) because of infertility. Only time I was able to get pregnant resulted in birth of a premie when I was 30: I like to say he was actually not 2 months early, he was 2 years late! Had right side.mastitis before & after he was born. Breast feeding was not successful since he was in NICU for 4 weeks.

Keep in mind, with the ages observed here, that we are the computer savvy generation. There are probably plenty of ladies that are a decade or two older than us who may not have even realized what type of BC they had. They are not going to join our group here! Therefore, our panel is not a statistically significant cohort. That being said, anecdotal information such as this can lead scientists to further research.

If we get a slightly more formal survey going, I would be curious to ask about ethnic background, other than Ashkenzasi Jewish heritage. I happen to be German and Scandinavian.

I too have Graves  Disease, dx'd with ILC Stage 3A. I had my first child at age 31, that's when the thyroid went out of wack. Second child at 34,, ended up with Graves Eye Disease after having RAI. I have had multiple Eye Surgeries which provoked my Lyme Disease symptoms to come out (Dr.s kept testing me for MS),, anyway,, I was 41 yrs. old when Dx'd with Breast Cancer. I was always on the "small side" 115 -120 pounds 5'3. but right before my dx on April 25, 2013 I had gained some weight (25 pounds over a 7 month period)

Bellis, hejsa! Jeg er også dansk, men bor i Grækenland.

Danishgirl, thanks for reviving. Sending you good wishes. Are there any natural remedies for mouth sores? My Dad had chemo and I googled this and saw that there were some ideas. Feel better.

I'm 42 with a 14 and 16 year old.  First born was a premie, placenta torn.  Second born, preeclampsia. Always had normal cycles.  Sister on the other hand had endometriosis and had a heck of a time (no signs of BC for her).   I've always been active, eat fairly healthy with an occsional cheat and do (did) love my red wine.  I've always had trouble with my left breast.  Achy, cysts, etc but was always told by my gyno that everything seems normal.  Was diagnosed with DCIS and IDC on 12/5/13 based on my core biopsy.  Lumpectomy on 1/6/14.  As of 1/14/14, new pathology reports came back with ICLS and ILC (pleomophic and classic morphology) with no report of IDC/DCIS.  I did all my homework for DCIS/IDC so I'm trying to catch up on this new form of BC.  Onco appoint 1/21 to discuss resuts.   My first mamo was at 39, skipped two years and now faced with this. BRCA negative. OncoDx 13 

Danishgirl66 - So sorry that you're dealing with active BC again. I'm keeping my fingers crossed the Afinitor/Aromasin combo is working and I hope that your energy level improves soon. I've read that putting the Afinitor in some type of gel cap decreases the incidence of mouth sores. There's more on the Afinitor thread about that. My dad was in a clinical trial and took Afinitor for lymphoma. He avoided the mouth sores and swore it was because he gargled with mouth wash twice a day. I don't know if it was that or he was just lucky! 

Iwannaseeyoubebrave - As others have said, there have not been a lot of studies on ILC and many of the ones you will find googling are quite old. I too have pleomorphic ILC. I was demoralized after searching the web. You won't find anything good if you search pleomorphic ILC. My MO has told me that there is some thought that pleomorphic ILC is more likely to have unusual hormone receptors then classic ILC. So, more women that are Her2+, ER- or PR-. Most of the studies did not look at hormone receptor status and were completed before Herceptin. He think that the poor outcomes may have been more linked to receptor status then the pleomorphic nature. No studies to support that but it sure did make me feel better! I hope that you and your MO come up with a treatment plan that your comfortable with. Check back and let us know how you're doing.

Holeinone,  My MO started me on Arimadex. but my aching muscles and joints kept me awake at night so switched to Femara.  I don't know if that was any better but in the meantime I started taking Celebrex and later added Cymbalta as a mood elevator.  The combo really helped my symptoms.  I don't know which AL is the best for ilc.  I was on Femara for about 3 years before the mets showed up.  I was diagnosed by elevated tumor markers in November and had just had a PET last March that was normal.  

ILC's way of metastasizing is very difficult to diagnose early because it starts off with a thin layer of cells.  My mets are covering the outside of my lower stomach and several parts of my colon.  I had GI symptoms, but attributed it to reaction to taking so may meds.

I had the genetic testing of the biopsy from November to see if any genes had mutated.  The test came back ILC Hormone pos, Her2 negative with no mutation

I don't know how long I'l be on the Aromasin/Afinitor combo before more scans that know clearly show abdominal mets.

By the way congrats on the hole in one!

toomuch,  My MO took me off AA combo for 2 weeks for my mouth to heal.  I've been back on for about 10 days and no mouth sores (same dose) and not quite so chemo foggy.  The AA discussion group convinced me to wrap my Afinitor in a small amount of marshmallow to swallow.  Thank you for the encouragement and advice.  Hope your dad is doing okay.

danishgirl66

Danishgirl,  The difficulty of dxing ILC mets is what I found so frustrating.  I could barely walk and was having unending severe pain in my back and right hip (I was already dxd with bone mets elsewhere).  I couldnt have rads or any other treatment apart from pain meds until it was "officially" dxd as a progession in that area.  So for over a year my MO was sending me for bone scans, ultrasounds, MRI's, catscans every 2 months until they could finally see it!  I started rads the next day and was walking again without pain within 2 weeks, I love rads (and never thought I would say that).  Apparently ILC grows as a flat sheet, like a spidersweb, instead of a clump, so that makes it harder to see.

Tanya

I just had my annual chest MRI with contrast today.  Then drove home in rush hour traffic.  

These are the kinds of tests where you have no idea how good or bad, your results

will be.  Even though it's coming up on 5 years from diagnosis, it still feels like

I'm right back in the middle of treatment, whenever I go to the hospital - a place I know

all too well.