ILC - The Odd One Out?

I just got dx'ed a month ago (already!) and I'm 54 and premenopausal. I've only recently begun to get irregular too. I'm 5'3" and 170 lbs and from the looks of it, I'm the resident fattie lol. I don't know if my mother took DES, but fibroids and late menopause run in the family anyway and g-ma told me about 7 years ago that I'd be bleeding until 55 and I was horrified, but the only way I won't be now is if chemo shuts it down. I also started early--age 11. Birth control pills--maybe for a total of 5 years but all of those 5 years were around 30 years ago. My shape is a definite apple--not one whit of juicy pear here and I've always heard that women with fibroids are more likely to be pears.

I was 65 at dx so part of the older group, never took HRT but had my last period at age 54 a little later than average thus had extra estrogen exposure that way. My post meno weight went up to 172 lbs by age 62 but gradually dropped back to 168 at dx. I like to think that it was declining estrogen due to the weight coming down that kept the cancer progressing further into the nodes. I only had one positive node but it was a big one 15 mm of cancer tumour but rest of the 14 nodes taken all clear. I lost a lot of weight during chemo and kept most of it off and now at age 69 at 148 lbs I weigh less then I did at age 50 all of which is very good news with ER+ ILC cancer IMO. I might even drop the AI early.

BTW I was just told that I had 'early stage' cancer, no numbers or letters and assumed that with ILC prognosis the TNM staging wasn't all that important. I used the information from pathology reports for my signature but I'm not sure if the tumour measurement of 1.5 cm in the report, which is the central mass of the tumour that was visible to be measured matches the way tumour size is reported elsewhere. Someone above mentioned that their tumour size could not be determined so I guess with ILC threading it can be an iffy thing. My surgery was planned using MRI imaging and the piece removed during lumpectomy measured 8cm x 5cm x 3.5 cm, so the actual size of the tumour looking with microscope would be larger. I still think of my stage as being 2A though when comparing with IDC.

Kathy

Okay, here's my background: never overweight, dx at 53, social-smoker (friday nights) during my 20s and early 30s, Friday night social drinker too, which stopped upon dx. 5'8.5", 132 lbs, lost 10 during chemo but seem to have gained it all back (grrr). Regular hard core exerciser/athlete, always have been. Lived in a clean (good air, no environmental problems) town all my life. Vegan/vegetarian, can't remember when I last ate fast food, lost husband in 96 to cancer, dx with fibroids (2x) and had 2 surgeries (myomectomies) to remove them. Dx with a pheochromocytoma (extremely rare, look it up) in 2007 after 7 years of increasingly frightening symptoms that no medical person could figure out; I self-diagnosed and then GP confirmed. This is an adrenal tumor that releases adrenaline (catecholamines) into the system with increasingly ferocious attacks. Catecholamines have been linked to higher incidence of some cancers. Exposed to nuclear fallout from Nevada at age 3 making me a Downwinder, also proven to increase likelihood of some cancers. No history of breast cancer in my family, no gene.

I have a rarer blood type: B positive. Maybe something there?

One more thing: early menstrual period and was still pre-menopause when I began chemo (which of course stopped everything, thank god--I think of all that estrogen flooding my system for so long). Highly ER/PR +.

When I re-read the above, I'm shocked I'm alive. Oh yeah, I had dense breasts too, making it harder to find anything with regular mammograms.

Claire

this is interesting, I agree. Things I should have added to my previous post. I am A+ blood type. Started menstruating age 11. 63.5 inches tall and 142 lbs. Hysterectomy age 35 for adenomyosis. Removed the tubes since they were poly cystic and had caused an adhesion to my bowel that had to be removed 2 years prior. Former smoker 1/4 pack a day. Not much of a drinker, enjoy a nice cocktail or beer every once and awhile. Not sure of DES status.

Oh yes I want to add more too. Never smoked, drink very lightly--maybe one or two a month. Have a raging sweet tooth which is why the weight problems. Breastfed both my babies for 2 years each and I'm convinced that my cancer started at the site of an old injury where my ducts used to block up, though maybe that was from something else that caused this? My girls are 19 and 21 and surely I haven't had cancer that long. I do exercise--not a fitness freak but I love to go folk dancing every week and hike and just do exercise that I enjoy. I'm actually in pretty good shape physically and most people guess me to be younger.

Nocompromise, if you are in menopause anyway, you should really discuss switching to an AI, in my humble opinion.

Momine, that is a great idea. There are similarities that I read and think, "wow, I should have mentioned that in my response". So, yes, a questionnaire is brilliant!

OK, like I said, it will have to wait till after the holidays. One thing that has struck me already is how many of ours were DXed in our late 40s. "Geriatric" my behind!

Great thread. I was diagnosed at 54 with stage 1 ILC with some DCIS. I was in menopause but didn't know it. Lots of issues with fibroids and other growths in my uterus and ovaries. Had very dense breasts. Exercised a lot, ate healthy, did not drink. Was a little overweight by 10#. Then had LCIS seven years later.

For the survey, I would ask about extreme stress or depression before diagnosis, hormone use, body mass index, breast density, Ashkenazi background, as well as things others have mentioned. You could include a BMI calculator. I always had issues with my mammograms needing more tests. I have colon, ovarian and breast cancer in my family and also have Ashkenazi background.

I was on Tamoxifen as I couldn't tolerate the AIs. Since my mastectomy my doctor is taking me off it and switching to Evista. Interesting tamoxifen may not work with lobular.

Robin, I lost a lot of weight in treatment, but I happen to like being skinny, so I basically have tried to stay that way. For a while my onc was bitching about it, so I used to tell him I was a CM shorter than I really am

Dx'd two weeks before my 52nd birthday, peri-meno at the time. ER/PR+, HER2- Pleomorphic ILC Had it not been found then, most likely would have become multi-focal and multi-type since same breast had other areas of ALH along with ADH.

Ironically, the BC side was NOT the problem child breast. Right side always had more Fibrocystic issues and a prior biopsy. Thankfully, Mother did not take DES.

I had that fateful mammo on my 57th birthday - 4 years of HRT after many years on the pill. One of the very special Triple positive girls. Also suspect I may be a DES daughter but my mother is too old to be sure of what she was given.

Adding more. As stated above, I was 49 at diagnosis. I have never been a healthy BMI. Not a big drinker as of late, but did drink in my teens (bad girl). Apparently, I had density issues, but no one ever told me until I read it after the diagnosis. Every year I flew through the mammo, never any extra pics, never a call back, never a recommendation for 6 month screenings. 8 months later, I was diagnosed. I also ran behind what we called the "mosquito man" in my youth. Fibroids were picked up on my CT scan at diagnosis.

Two interesting things, at least to me. Any birth control I ever used took away my periods, even low estrogen progesterone birth control pills. The time would come for a period, and it would not come. The doctors told me that was okay. I then went on Mirena the last 10 years before diagnosis, which is a progesterone infused IUD. I wanted a tubal ligation, but was refused that and told this would be "easier". Again, no periods. I rarely had a period from the time my son was born in 1991 until diagnosis--only if I was in between birth control methods.

The other thing is that I definitely have had that combo of things called metabolic syndrome--high blood pressure, overweight, every now and then a bad cholesterol, always had high triglycerides. I had blood sugar problems, but with low blood sugar. I also had a 9'5" baby which is indicative of future diabetic problems down the road. I think I've probably had excess insulin for quite awhile. There seems to be a role for insulin in this whole mess. I breastfed my son for 2 months. I was 29 when I had him.