ILC - The Odd One Out?

MmeJ

I've been considering starting this thread for some time. Let me say that I'm neither whining nor competing. I am not a scientist or health care worker; however, I am a good sleuth with a strongly analytical temperament, I'm not afraid to ask questions, and I like stats. I am fortunate to have free access to medical journals. I've also been inspired by a recent thread on the Stage III forum regarding prognosis.

I wouldn't go so far as to say we are the orphans of BC (I think that's male BC), but I do think ILC is kind of an afterthought.

Yes, it makes sense to throw most of the time and effort and money into IDC - it's much more common. Some of the other less common types have a very good prognosis. And some subsets - HER+, triple negative (high grade), BRCA+, IBC, are more aggressive so they get a lot of attention despite a smaller population. Many of our drugs and protocols, and ones in the pipeline, are trialed with Stage IV first (rightly so) and then "backtracked" for use with lower stages if they prove to be useful.

So, we lose out, sort of. We don't fit most of those profiles. Most ILC is hormone positive, HER2 negative, and grade 1 or 2.

And the known frequency of failure of standard mammography to detect ILC means that so many of us are diagnosed at Stage III, which certainly skews the survival stats because so many of the analyses are not done stage-matched, and lead time bias is so much stronger. Here again, we lose out.

It is only very recently that there has been discussion about chemo and ILC (hormone positive) and its effectiveness. We just get the same protocols as IDC, well-studied for decades.

I recently found a few articles in reputable journals from a few years ago that indicate that ILC is possibly de novo resistant to Tamoxifen. Does anyone have newer information?

A perusal of this year's San Antonio meeting site using search term "lobular" yields a whopping total of three abstracts submitted for the poster sessions, two of which are single-institution retrospective studies.

Many of us share our diagnosis and treatment information in our signature lines. I know that ILC is referred to as a geriatric cancer, or it used to be. But there are too many of us who are not within that age range who have ILC, and with large, slow-growing tumors so they were around for a while, long before dx. Why are younger women developing ILC? Are we DES daughters? Is anyone asking these questions?

Our (non-Stave IV) prognosis might be the most difficult to estimate. It seems that the more I look, the less (substantive) information I find.

Momine

I have been thinking for a while, that unscientific as it might be by proper standards, it would be interesting to extract the stats from this site and try to build a data base and include other info, like age at DX, weight, height, some basic lifestyle things etc.

wallycat

I am math averse so I try to stay away from statistics if I can.

I agree that "geriatric" is a horrible way to define ILC. I was dx 1 month shy of 50 and if it had been growing for "years," then I was in my early 40s. One of the reasons I try not to read survival rates with this cancer is because if you base it on older populations, the data is already skewed. Do 50somethings actually live longer or less?

It is also the reason I question 10+ years on AIs....a 70 year old would probably die of natural causes...and what side effects will it leave a 60 year old; will she die from the treatment or the disease?

MmeJ

Momine, that would certainly be useful, because I think we might be able to spot trends. I know I've sort of done that as I've read the forum over time, informally noted it.

wallycat, congrats on being 6+ years out! I, too, question the age cuts in so many of the reports. I'm pretty sure that "50" is used as a surrogate for pre-meno vs. post-meno. Well, "they" have the actual information, so why not use it?

I was 50, pre-meno, at dx. So all three of us who have posted so far were "young" with ILC.

I've never been able to find reports about outcomes for those of us who become menopausal because of treatment, and I wonder what picture that would create - maybe that's a variation of your questioning re extended use of anti-hormonals, which I share. We simply don't know yet what the long-term effects of AIs might be, because they haven't been around long enough. I suppose they could look at what happens to pre-meno, non-BC women who have been put into surgical menopause for some kind of rough guess, but that population would not have had chemo and wouldn't be on anti-hormonals.

Warrior50

I was diagnosed 3 days before my 50th birthday.

JAN69

I was 69 at dx with triple negative. I think I'm the odd one. Jan

Holeinone

just turned 58 before dx, it had been growing awhile, 6 nodes positive, mammos missed it, same old Lobular story.

kar123

I was diagnosed at 40. It was about 7 cm so I assume it had been growing since my early 30's. I had Graves Disease (hyperthyroid) and had it treated with radioactive iodine. I have always wondered it this was related to my breast cancer because it is one of those informal pieces of info that I see on here with ILC sometimes.

KSil

I turned 48 in January and was diagnosed with ILC in April. I'm 5'4" and 130 pounds. Non-smoker and only drink occasionally.

Rdrunner

I was 44 and very pre meno. at dx with a 6cm tumor and other small ones including a idc. I did read somewhere that ILC is a contradiction in terms of the nottingham scale for grading , some pathology experts feel it should be grading differently. I did have chemo after surgery and am taking tamoxifen and it scares the hell out of me that tamoxifen may not be working.. i know femara is supposed to work really well. will be having a discussion about the ovaries and med in jan at my next appt.

MrsDarcy

Hi. I am 45, pre-meno, and dx'd with a 3.5 cm mass in September this year. I am 5'6, 130 lbs. I do not drink and I don't smoke. I don't know if it's worth mentionning but I was also on birth control (Lo-estrin) for irregular menstrual cycle.

melmcbee

I was 42 at dx. 145lbs. 5'6", I do smoke and would drink quite often.  I had 3 tumors with the largest at 2.9cm . They tought it was 1 tumor at 5 cm. Oh and I also had breast implants.

MsPharoah

Hi, I was diagnosed at 62. Never had hrt. 5'9, 170 lbs. smoker until I was diagnosed and I still have a glass of wine every night with dinner. My mother died of bc but I don't know if it was lobular. My cancer was diagnosed as a result of microcalcifications...no lump. It is very rare for lobular to generate microcalcifications and probably why my tumor was as small as it was.

MsP

mary625

Diagnosed at 49.

MBLizzy

Diagnosed just after my 50th. I'm 5'7" 122, don't smoke, do drink. Among other things, I am a group exercise instructor (for over 20 yrs). I am still teaching 4 classes a week (I work out daily). No lump for me, but they did see micro calcifications on a mammo. After MRI, thought I had 2 tumors, one over 5 cm, but the larger tumor turned out to be three smaller tumors. Had BMX and found ILC in my non-cancer side also.

Kiss77

Diagnosed at 35 but the lump was there maybe 4-5 years ago. I "blame" pregnancy for that - my second child is born when I was 30. But who knows.....

Momine

I was similar to many of the other posters here, under 50 (DX a few months before turning 48), 5'8", normally around 135 (after I had the kid, not baby weight, but my body changed - probably hormonal and probably not good for me), but I had gained weight steadily for 5 years prior to DX, one of the reasons I thought something was wrong. When treatment started, I weighed close to 150, which for me was just plain weird. last time I weighed 150, I was 7 months pregnant.

I did probably drink more than what is healthy, but nothing super excessive, more the wine with dinner variety. Always ate a reasonably healthy diet and was always somewhat physically active.

ETA: To clarify my babbling about weight/hormones above, once I was completely estrogen deprived by cancer treatment, I went back to being the 125lbs I was in my 20s and prior to having a kid. In those years, I was also unable to conceive. Still, even at 150, I was supposedly within normal BMI. So I have never been clinically overweight.

Racy

Like you ladies, 40 something, healthy BMI, (no history of cancer in family), good diet, maybe enjoyed wine.......

Why?

sgreenarch

MMeJ, thank you very much for launching this thread. As you can see from the amount of responses you've generated in a mere 14 hours, many of us feel the same way you do. We are stymied by what caused this and concerned that our treatments may not be well-tailored to ILC specifically, rather we are treated like we've got IDC, come what may. I'd be so interested to see if an informal group of us could at least see some commonalities. I know that it's not hard science, but we who have ILC are certainly the ones who are paying the most attention. I understand why they can't focus on a small percentage of us, but it is very frustrating.

I often wonder if my BC came about due to my exposure in utero to DES, resulting in a lifelong hormone imbalance. My Mom took it throughout most of her pregnancy with me. I was dx at age 49, never smoked, drink hardly ever. I've always had problems that seem to be related to an overabundance of estrogen. By age 14 I had menstrual cramps that were so bad I used to faint monthly. That's when the DES exposure was discovered. I was taken to a gyn and he said my cervix looked like that of a DES daughter. I was put on heavy duty birth control pills to help with the menstrual cramps (didn't help and luckily I went off of them quickly because the pills back then were much more estrogen packed. Kind of annoys me to think of it now, but no one knew better.) Luckily had normal pregnancies and births, but grew huge fibroids and had to have a hysterectomy at age 47 (kept ovaries.) Turns out my uterus was backwards, also a DES sign. I was since dx with gallstones even though I am relatively close to normal weight (could use to lose 15 lbs. oy!.) Gallstones can also be caused by too much estrogen. At 49 a routine mammogram turned up one 2cm ILC tumor and an MRI revealed a second smaller one. Had a unimx and oncotype of 17, so no chemo, no rads. Was premeno, so took tamoxifen for a year until I had the rare SE of having my estradiol (a form of estrogen) levels shoot sky high. I took lupron shots for 6 mos to chemically suppress my overactive ovaries (they are sometimes tricked by tamoxifen into thinking that there's a shortage of estrogen so they go into overdrive) but opted for an oopherectomy at age 50 (some ovarian cancer in the family even though I am BRCA neg.) My onc kept me on tamoxifen for another year (I guess it takes the body a while to stop producing and clear it all) and I switched to Femara last January.I now have very high cholesterol (SE of the drug as it was always normal before) and am concerned about the new research that came out in November talking about how high cholesterol may interfere with the effectiveness of AI's (what are you supposed to do if the high chol is caused by the AI's? Talk about chicken and egg...)

Though I have a positive attitude (I am determined to stay on Femara) I am having a rough time. Lots of SE's despite a very healthy diet, exercise, etc. I think it may be because my body is used to too much estrogen and now I've brought it down to close to zero. Of course, would rather have SE's than a recurrance, but unlike tamoxifen, Femara has greatly impacted my QOL. Don't want to complain as am happy to be alive and see my kids grow up. Learning to revamp my personal and professional life around this medicine (basically slow it down dramatically.) Am seeing onc in Jan and will ask her some of these questions.

Happy you started this and hope we can gather many responses:)

Bookwormtoo

I was diagnosed last year. I was 64. I am 5'5"and 150lbs. I have not history of BC in my family. I have never smoked and I drink infrequently. I was taking no meds since I had been in good health. I opted for a lumpectomy and radiation. My onco score was quite low so my Onc. suggested no chemo. Six months after my radiation I started to have health issues...anemia...horrible joint pain...disabling fatigue..lowgrade fever...five UTIs in a two month period. I have stopped letrizole until I feel completely OK and am off the variety of antibiotics that I have taken. This is supported by my oncologist who suggests starting it up again in the new year.

MmeJ

Warrior50, another young'un. Looks like you're in the middle of chemo and I hope you're getting through it.

JAN69, you are indeed a minority within our minority. Based on your dx, I assume you had chemo and that it's worked for you.

Holeinone (great name; dark humor? I assume you're not referring to golf), looks like you would just be finishing up chemo now? Hope you're hangin' in there. To me, 58 is still young.

kar123, you were 40? I appreciate you mentioning the thyroid aspect. I wonder if some of us were off, maybe subclinically, and that was a contributor.

MsPharoah, you're a little older than most of us, but I note that your cancer had a bit of an unusual profile with the microcalcifications.

Ksil, Rdrunner, Junipergirl, melmcbee, mary625, MBLizzy, Kiss77, Racy, sgreenarch: all of you (us), just pups!

Momine, very interesting about your stretches of different amounts of meat on your bones during your life and how it impacted your fertility/cycles.

sgreenarch, you're welcome. I, too, wonder especially about how many of us are DES daughters and if there's a connection between it and ILC that wouldn't start showing up until now (as we hit our 40s and 50s). I think of this as possibly analogous to what we now know as post-polio syndrome - took researchers many years to figure that one out, as there had never been a population of long-term survivors and it took time for the docs to compare notes on their patients.

I did not have children (didn't try, by choice) so I don't know what my pregnancy profile would have been. I did smoke, but was also terrifically fit for most of my adult life, ate well, have never been a drinker. I started menstruating at 11, which was early onset in my day. I took BC pills for about a year when I was 19 and they made me sick as a dog so I dropped them. I have had a horrible time with Tamoxifen but less so with a switch to Mylan brand. I have the profile to have warranted the BRCA test; I am negative.

I was thinking about this some more last night, and we are now just learning about breast density as a risk factor. With so many of us diagnosed pre-meno with large tumors, it makes it urgent that we push HARD for next-step diagnostics in the presence of dense breasts. I know a few states in the US have laws on the books now; it needs to be universal.

The year after I was diagnosed, the cancer center where I am treated asked me to sit on a patient panel. One of the things I told them is that they must amend their intake questionnaires at their breast center to include a question about Ashkenazi Jewish descent. This, too, needs to be a universal question.

None of us would ever wish this on anyone, but we ILC gals are a bit of a voice in the wilderness. What we lack in numbers, perhaps we can make up for in volume.

Momine

Mmj, yes, and I think it was actually the hormones that caused the weight swings, not the other way around (as it would usually be assumed). I did not fully develop till I was 24-25, and when I did, I also put on weight quite suddenly. So I think my hormones have always been slightly screwy, which is probably more common than not.

MmeJ

And yet, Momine, there is still no especially reliable test for estrogen levels.

bookwormtoo, you posted as I was writing my long post, above. None of our treatments = picnic, but I'm glad you got to skip chemo, and I hope you're able to shake off these UTIs. I have been fortunate to have had only one in my life, but I remember it very well.

MsPharoah

MmeJ. Thank you for starting this thread. I didn't feel old until I started breast cancer treatment! LOL Also note that I am PR- and I am sure that was the reason I had an intermediate onco score, and thus opted for chemo.

Do all of us have LCIS? That is something I am curious about because I have it and there is a lot of controversy about how to manage LCIS...some doctors are very aggressive and others aren't. It would be nice if there was consistency about LCIS.

I also wanted to add that over my lifetime, my cancer boob was always a problem child. I had a benign biopsy at age 29 and a benign cyst aspirated at age 46. I wonder how many of us have had call backs, biopsies, etc. before the dx.

Another thing that is disturbing about Lobular is that there are a lot of breast surgeons who immediately recommend a bilateral mastectomy, without any further testing because they say that lobular is so often multifocal and multicentric. I think we need to be more vocal about having breast conserving options.

And then my last comment about lobular is how depressing it is to read that the chemo protocols are not as effective for lobular because it is generally slower-growing. Just as we need better diagnostic protocols for this sneaky beast...we also need more research into how best to treat lobular...especially when the onco comes back intermediate or there is node involvment, young age etc. I would have been happier going through chemo had the literature said it was kicking my cancer's ass.

MsP

Momine

MmeJ, true enough, which is probably also why most docs just kinda jab in the dark at hormonal problems.

MrsDarcy

My onc also advised against the chemo stating a 4% benefit. I still had the Oncotype dx done and the results will be ready around the 16th. I have my tats for radiation but have not yet been scheduled for my rad therapy. I am hoping my onco is low .

RobinLK

49 age of DX, mostly ILC, some IDC found. Triple positive and Grade 3. So guessing another anomaly? First mammo at age 22 for painful lump in breast, declared fibrocystic/dense breast tissue...call back on problem breast in 2007, MRI declared normal dense breast tissue. Mine is very aggressive and fast growing, was not even a year from last mammo when detected. Was not on last mammo, and 2.5 cm tumor found with 9 lymph nodes involved. Throwing everything at this, possible ooph in my future. No onco test for me, will be checking BRCA, now that my ovaries have been deemed polycystic and are requiring multiple follow-ups. No family history.

momand2kids

48 at dx--healthy, had run marathons in my 30's, no really bad habits--- doc said it had been growing for a while--had my last child at 40 and I wonder if that had something to do with it--- on the one hand I love that it is slow growing, on the other hand, makes me crazy that it was not seen on so many mammograms....

Did chemo, radiation and will be done with letrozole in the spring--cannot wait! Feel pretty optimistic about the future and don't worry too much about this.... but ILC is interesting and I think it accounts for about 20-25% of breast cancers.....

Holeinone

thx to all...we are a diverse group, but have one horrific common thread.

My tumor was small, but aggressive, ki-67 score, elevated..28%...very dense breast tissue, no LCIS according to path report. I don't think my mom took DES, but not completely sure. I was a late bloomer, tall, had 2 kids. I have always been super active, competitive tennis, golf, ( hence the Holeinone reference ), half marathons, hiking.. I do have family history, so not totally shocked but I was naive & thought if you were getting yearly mammos they would catch it early....boy was I wrong...

smrlvr

I found my lump 2 weeks after my 50th birthday. I had normal mammograms every year, but I suspect it was there for years. My left breast has been larger than the right since I had kids and it was noticeably bigger at DX. My breasts also hurt for years. I was on loesterin until 2/2013 because I wanted to see if I was in menopause. I was not. Got periods like in high school. I also started my period when I was 10. My body makes a lot of estrogen. I think I sort of blame the pill. At DX I was 5'4, 165 lbs. non smoker, moderate drinker.

About tamoxifen, there is an article on this site about AIs being better for lobular. I met with an MO at Sloan Kettering for a 2nd opinion and straight out asked her which is better for lobular. She said she did read that study and recommended that I either remove my ovaries or get Lupron injections to force menopause so I can take the AI. Of course, this is if I don't just go I to menopause as a result of chemo. I hope I do. Yesterday I was tested for BRAC gene. I have Ashkenazi decent in my family tree.

I really do feel like ILC does not receive the focus it should. I guess the more we can learn about it ourselves, the better. Frustrating.

toomuch

Interesting thread...I was 48 at time of diagnosis. I had ILC and LCIS on cancer side and ADH on "good" side. Dense breasts. I have Ashkenazi Jewish decent. Took birth control pills for almost 20 years. Had low progesterone levels in 3 pregnancies so must have had estrogen dominance. My PGM and 3 of 4 great aunts were diagnosed with BC in the 1970's/early 80's. All treated with radical MX. Ofcourse, there's no  way to know if they had IDC or ILC, None of them died from BC! I'm BRCA negative. No DES exposure but grew up in NJ and did run in the fog behind the trucks that spayed DDT in the late 60's/early 70's. I shake my head now thinking about it as I eat my organic diet! My brother was diagnosed with prostate cancer at age 50 just 6 mos before I was diagnosed with BC. Is there a DDT connection?