ILC - The Odd One Out?

Tinanicu

hi there. I'm 42. I was 41 when diagnosed with bc. On my second ever mammo, they noticed some calcifications. I got a biopsy. Came back DCIS and LCIS, grade 3, estrogen 100%+, progesterone 75%+. Also found out I'm positive for BRCA2 mutation. The doctor I worked with said, "oh LCIS is nothing. That isn't even cancer. It's the DCIS you should be worried about." So, I get a bilateral mastectomy and path shows micro invasive ILC, not IDC. Thank god I had DCIS so that I caught this early. Otherwise, I don't think the LCIS or ILC would be detected on the mammo. 

So now I'm on tamoxifen and I plan to get my ovaries out later this year. 

Meganmm

I haven't been on this board much, but this topic caught my eye.  I too was diagnosed at age 49.  5'6", approx. 145 pounds, daily exerciser.  I had 2 tumors in one breast, along with LCIS, and a large amount of LCIS in the other breast.  I had a bilateral mastectomy.  This has been an interesting thread to read.

hollyboo

Good points. My periods started at 10 and stopped late. 

I too had short cycles, 21 days. Heavy periods. Hormone related migraines. Short luteal phase. Many, many miscarriages before complete pregnancy at 41. Morning sickness all pregnancy. However, felt my best in life otherwise as well as during breast feeding. Tendency towards depression returned with periods. 

Sleep apnea. Type II Diabetes. 

sarajaneevans

I was diagnosed on my 68th birthday...never missed my yearly mammogram and am quite frustrated that more is not being published about the fact that lobular carcinoma is not detectible on the mammo-- women are not being alerted to this fact!!!! I dont understand this. My tumor was 7 cm....I had a lumpectomy,followed by a resection to get wider margins..SNB with 1 node positive for cancer... 6 rounds of  taxotere, cytoxin...just finished 35 radiation treatments,and I'm taking Arimidex daily. 

I was diagnosed probably 40 years ago with Hashimottos Disease and have been on thyroid medication since that diagnosis. I am active physically and eat a pretty healthy diet for the most part...drink ocassionally and quit smoking 30 years ago...except for the BC I have been pretty healthy...

karen1956

Hollyboo,   I too was diagnosed with a luteal phase deficiency....4 confirmed miscarriages...needed to take progesterone to sustain my pregnancies....in my 40's my cycles were 25 days....13 or 14 periods/year...my periods didn't start till 14 1/2 and chemo stopped them but I was peri-menopausal at time of Dx.....The first time I was called back on a mammo was when I was Dx....such is life....MY 15 year old and I were talking this evening about her risk for BC and I tell her that her biggest risk is being female and having breasts!!!!

I know that ILC is hard to diagnose, but I asked if we should have MRI's or ultrasounds routinely if we have dense breasts (now this was after I was Dx or during the Dx process, and I was told that if they don't know what they are looking for, an ultrasound is not helpful and that MRI's have too many false positives.....After my Dx, I had an MRI and I lit up all over the place.....the non cancer side had 2 biopsies because of the MRI and then came back benign...but post bilat, the pathology came back prec-cancerous....

No easy answer but lots of research that needs to be done......Maybe one day my daughters won't have to worry...or maybe their future children!!!!

Katarina

Great Thread!!!  Thank you MmeJ.

 DX' d at 49. 

Missed on many ultrasounds and mammo. Found on biopsy and MRI. Advanced.

MmeJ: i was really interested in your point on staging. What do you mean by:

"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." 

Are you of the thought that we're stage IV but kept at stage III?

I had lymph node that were "grossly cancerous" and 2cm apiece. I also had heavy angio-lymphatic invasion. The worst of the three TN and M's.

I'd like to find the Onc's who a specialists in ILC. I can tell even the big NCI centers lack ILC experts. 

Agreed: very few research studies. My onc told me and my friend this was the "ghost cancer".  Kinda like melanoma, hard to detect but deadly. 

I know its slow growing but recurrence rates peaked at 2 and 5 years survival based on one study I read. Does anyone have anything different. 

It would be great if we shared readings in ILC. I feel like this group is the most motivated to learn and share because we're getting the least attention. I love the idea of supporting eachother. 

If anyone has a super knowledgeable Onc on ILC I'd like to know who it is (private pm). 

This is what I have learned - right or wrong - from reading and Onc inputs - , post dx:

1. Doesn't respond to chemo like IDC

2.  PT Scans don't help

3. spreads to endometrial and peritoneal lining as often as bones, liver, etc.

4. Antihormals were not clinically tested against a sufficient sample trial for ILC patients. 

5. Survival and co-morbidities were worse after 5 years, than they were for IDC, but not linked.

6. No followup on cause of morbidity after 5 years 

Any special clinical trials for ILC and mets?

Hugs,

Kat

gemini4

I've heard the argument against MRI due to the high incidence of false positives. But for those of us who have dense breasts and a history of ILC, I think that's a risk we can all take. Better to have a false positive than a false negative (as so many of us had with mammograms), right? 

hollander

Hi ladies--

I've been reading this thread with interest.  I hope my stage iv info doesn't scare anyone, but will help keep you out of this club (but we welcome new members with open arms and lots of support!).  

I was never what I would consider exceptionally "hormonal".  Started periods at 12, had rare cramps, regular to light flow, no PMS, and they were more irregular than regular.  Was on the pill (always low dose estrogen) for maybe a total of 6-7 years.  When I was trying to get pregnant, I found out I had a "long luteal phase" which gave an official name to those irregular periods.  I ended up taking Clomid- lowest dose- for both of my pregnancies.  One round for the first and 5 or 6 for the second.  No morning sickness at all, nice normal pregnancies, could have done it a couple more times, but ex-husband said 2 kids was it for him. (I asked several drs if this could have caused bc, and they all said no). 

When I was 36, I was diagnosed with some microcalcifications- very tiny- and told not to worry.  Started with annual mammograms at 39, eventually biopsied some of those microcalcifications, and they were benign.  Noticed an area of thickening tissue in the left breast-- didn't show up on mammogram or ultrasound, and was told that it was just dense breast tissue.  I eventually had a weird pain in that area, and the surgeon who had been following the other issues said we could biopsy it, but "breast cancer doesn't cause pain" and he didn't expect to find anything.  This was in Feb. 2007.  Needless to say, when he got the results, he was very surprised.  And so was I.  It was ILC. The 2.7 cm tumor was not aggressive, grade 2, and there was no node or vascular involvement. I had an MRI before surgery and the ILC finally showed up very clearly. I opted for the most aggressive treatment, had a bilateral mx, followed by chemo (3 FEC , then 3 taxotere), and 5 years of Femara.  Took the last one of those little pills on Halloween of 2012.  I wanted to feel like I had done everything I could to kick this beast to the curb forever!!!  I had completely normal blood work from the time chemo ended, and I had a clean PET scan in Oct./2007.  No issues with the chemo (besides the whole no hair thing, but it came back). My MO thought I was done, and considered me "cured with no evidence of disease".  I felt lucky to have escaped the C monster relatively unscathed.  I was supposed to have my final regular 6 month check up in Jan. 2013.  

But on 1/02/13 I had another odd pain, this time in my left side.  I thought it might be a kidney stone.  Saw my PCP, who sent me for an abdominal CT.  No kidney stone, but there were some tiny subpleural nodules at the top of the scan that she thought should be looked into.  Called my MO, who ordered a chest CT.  Those results resulted in a PET, which led to a needle biopsy of the largest nodule, which was 8mm.  The others were smaller, between 2 and 5mm.  After seeing the PET, my MO said the nodules lit up, but looked nothing like my breast cancer.  Fast forward to Valentine's Day, when she confirmed that it was indeed bc.  Still ILC, but only ER+ this time. Little c-buggers were shape shifters, and did not look like a "normal" ILC tumor. We were both shocked.  She is an excellent MO with an outstanding reputation, and her comment was that she sees something new every day.  We both knew that ILC was sneeky, but she just never considered me a "candidate" for any kind of recurrence.  I thought why do I have to so damned exceptional with this disease?????  And like many women here, my tumor marker was still normal, even though I had lung mets.  It took several months for it to start to rise.  

I'm almost at my cancerversaries- 2/12/07 for dx #1, and 2/14/13 for #2.  It's been a year of adjusting to my new normal, realizing that I won't have the life I expected, but being grateful for every day I have.  My family and friends have been amazingly supportive.  My medical care team is also very supportive, and does all it can to help me treat this as a chronic disease.  I started treatment with Faslodex injections back in Feb.  When a little bone spot showed up in July, we added Aromasin and Zometa to the mix.  I tolerated all of those meds with no issues.  Many women are able to remain stable for years on just AI's (if they have ER+ cancer), but unfortunately, I'm not one.  My tumor marker started climbing and my liver numbers jumped up in October.  Another PET found a 1cm spot on my liver.  Ironically, I had no new bone activity, and the lung nodules didn't even light up, so the other treatments were working, but not enough.  My MO said she doesn't mess around when the liver is involved.  So I started on Xeloda on 11/1, and stopped the other drugs, except for Zometa, which I hope will keep my bones strong.  Started my 5th cycle today, and I'm having great results so far (knock on wood!!!).  My CA27-29 has dropped from 106 at the end of Oct. to 54 in early Jan., and the liver numbers are headed back to normal. That was a nice way to start the new year!!! I am hoping for a long ride with Xeloda, and will do everything recommended to deal with SE's since this drug is working.

As far as lifestyle goes-- I've never been overweight, never smoked, always eaten a healthy diet, with the occasional junk food treat.  Drank more when I was younger, but never heavily/regularly, and drank the occasional glass of wine or cocktail since I went back to work full time 8 years ago.  Had my gallbladder removed in 2001.  Have been active, but not a gym rat.  No family history of bc.  According to a breast surgeon I met with, my only risk factor was that I was a girl, and I had breasts.   Is there any ILC stage iv "good" news that I can share?  My MO says that it tends to be a slow grower and not aggressive like some others.  MO said mine has been "indolent but persistent", which is why we went to the oral chemo when we did.  I agree with all of you that there just isn't enough specific ILC knowledge out there, and we are often grouped with the other cancer types because no one has a better idea.  

I feel very lucky that my body has let me know through odd pains that something was going on and needed to be looked into.  Since I've had so little pain from my mets, I'm glad that PET scans and labs have been able to alert me to changes.  I'm also glad to have a long list of treatments that will hopefully keep me going until there's a cure for this horrible disease.  At this point, I'm leading my same old normal life- work full time, raise my mostly grown children, and continue with activities that I enjoy.  Many people don't even know I've had a recurrence.  SInce I still look "normal" and feel good, I want to avoid having to deal with their reactions and potential inability to treat me normally, especially in the working world.  I haven't even had to take a sick day since my diagnosis!  So life goes on.....

Thanks for your patience with this very long post.  I hope you early stagers don't get freaked out- I apologize if this disturbs any of you.  I wish you all long, happy and cancer-free lives!  Sending cyber (((hugs))) to all of you!

Anonymous

Hollander and Katarina,

Thanks for the information...it seems there isn't a lot of hope for we ILC'rs, which kind of bums me out today reading this thread.  I'm sorry Hollander, for your awful "surprise", I really am.  Katarina, your post makes me wonder why I'm taking anti-hormonals, why I did chemo, why I had radiation, if there's anything at all we can do to get rid of this c.r.a.p. once and for all. As you can see, my status isn't great, but not hopeless, and I hate to feel that it's inevitable that we'll all be gone from this disease instead of something else instead. Happy friday.

Claire

Lily55

there is research on circulating tumour cells and without these ILC cannit sneak up;on us 

Momine

Hollander, please do not apologize, either for being here with us or for the long post. I am so sorry about your recurrence, but grateful that you took the time to share your story with the rest of us. you sound like a very strong and together lady.

RobinLK

Kat and Hollander: welcome to the thread! I welcome any and all info and sharing. I think it is important to learn what we can from each other. 

We are each "1 of 10" bc's being diagnosed. I have the added odds of being in the "only 25% to 30%" of bc's to be HER2+. 

I am currently throwing everything I can at this bitch, and hoping something sticks.  I think we each do this to hope for a lower chance of recurrence and a longer life span. There are no guarantees of either. Until there is a "cure," I will continue to fight with whatever ammunition is offered. 

hollander

Thanks for the welcome, ladies.  After that long post, I realized that I forgot to mention that I was 48 when first diagnosed.  Robin, keep up the good fight!  I agree about throwing everything you can at this.  That's been on of the frustrations with the stage iv diagnosis--- once the cancer wanders around to other locations, there's no cure, only treatment.  Luckily, I've found something that's working right now, so I'm back to pretending that I'm back in my old life.  Yeah, right! Well, sort of pretending.  Ignoring?  Just doing my thing and being grateful for every day.  I wish the research would hurry up!!!  

Happy Friday to all of you- have a great weekend!

lisa137

Hollander, I for one thank you for post. As a stage IIIc'er, who had at least one lymph node pretty much completely replaced by cancer, I know --though I try not to dwell much on the fact -- that recurrance or metastasis is a very real possibility in my future...if not already (unknown) in my present.

In the meantime, my onc is throwing everything he's got at it, and I have faith that he will continue to do so. But still, the fear is there. Reading from you that you've already crossed that line--and I'm so so sorry that you did cross that line--but reading that your life if continuing onward as normally as possible does give me hope and lifts my spirits a little bit. 

I do feel like we ILC ladies need to group together somehow --not just in this forum but worldwide, or at least nationwide, and make our OWN campaign --both for awareness, and for research to see just how different this cancer really is from IDC, and what should be done differently.  When I was first diagnosed I of course did some research and the impression that I got was that ILC was expected to be found in older, post-menopausal ladies, and maybe it is, but it sure does seem to be a heck of a lot of us diagnosed at 49. What's up with THAT? Can we--and those younger even than we are -- really be a coincidence, or is something else going on there? We aren't doctors or researchers, but maybe somehow we could get some who ARE doctors or researchers to take this question seriously BEFORE ILC escalates---and it seems to ME like it is escalating and becoming more common. Maybe it just seems that way because it's what *I* have, but reading through the newly diagnosed and new chemotherapy threads, it seems like more than 10% to me, and since so many of us are Stage III at diagnosis, this just seems to me like something that ought to be investigated more.

I'm kind of pissed off that it's NOT being investigated more automatically. The healthcare world needs to catch up with the real world, methinks.

RobinLK

Lisa, I agree about the numbers appearing higher. The numbers I posted are from the triple positive thread I posted on.  On that thread I cannot remember seeing another ILC sister, when I asked about it, those numbers were the response. On all other threads I follow, there is no large discrepancy between types.

I, too had multiple nodes that were no longer considered nodes(same size as my breast tumor) and lymph/vascular invasion. 

hollander

I agree on the targeted research. I wonder if ILC gets lost in the funding shuffle since it is more rare, and any findings would benefit a relatively small percentage of the bc population.  I keep hoping to win the lottery, so I can set up ILC specific research and get the ball rolling.  Unfortunately, we know what those odds are!!!

MsPharoah

Hello ladies and welcome all the new ILC posters.  I am one of the "old ladies" with ILC  (62 at diagnosis) and I have a theory that the reason that it has been considered an old lady cancer is that it is usually slow growing and hard to find, so that it probably isn't (or maybe wasn't) found until a woman was much older.  As old as I am, my cancer was found because of suspicious microcalcifications....not because there was a palpable lump or sonographic finding.  Presenting microcalcifications are very rare with lobular carcinoma as I understand, so who knows how old I would have been before they found my tumor had I not had the microcalcs.   Maybe I would have died of a heart attack with a nasty lobular tumor in my boob.

Is it possible that the reason there is or has been little research around lobular is that it is considered an old woman's cancer and old women are just not that important in the grand scheme of things???  I'm not whining...I think society places less value on old women.   I picked my oncologist for two reasons....1) she told me I could have a glass of wine every day and 2) she didn't hold my age against me when it came time to recommend some "kick cancer's ass" treatment.  She saw me as a healthy 62 year old with a lot of living left to do. 

I am saddened and angry about young women enduring this bitch of a disease!  And I consider anyone under 60 to be young!!!

So much love to all you beautiful women, young and old.  MsP

Nocompromises2013

I agree it is spooky the number of Dx at 49 

Is it that we as a demographic use the internet more so than elder ladies ? 

Is it that I for one had pencilled in mentally for my first mammo at 50 ( C knocked at my door 2 weeks prior to my 50th) - how many have reg mammos b4 50 - in AUS they don't push them on you till 50. Would have liked to have had one at 45 at least 

My onc said MRIs only used for ILC to problem solve how they will treat it's locate rather than for Dx  - since in my case we already knew it was there thru mammo - ILC can show up on mammo and definately on an U/S - mine was clear as day !! 

Hollander your post is pretty sobering your initial Dx similar to mine except I had a @/$& lymph node too - I am glad you posted gives me a reality check when I think I am done with this disease. 

smrlvr

Hollander, thanks for your post.  I am sorry you are going through this.  It seems you are able to live a "normal' life.  I hope the SEs of your treatment are not making you sick.

I have heard some  say that the only difference between IDC and ILC is where the cancer starts; that in IDC it starts in the ducts whereas ILC starts in the lobules.  But I did read something that specifically said ILC has an "Indian file" cell structure in that they line up.

I also wish I could find an onc who specializes in ILC.  We truly are underrepresented.  I would love to bring more national attention to this

toomuch

Hollander-Thank you for taking the time to post your ILC experience. I'm sorry that you're now dealing with a stage IV diagnosis. I'm glad that the treatments have been relatively easy for you to tolerate and I hope that you have continued success with Xeloda.

I've noticed a trend here with a lot of women reporting that they had really enlarged nodes. My sentinel nodes was 2 cm, more then 2 times the size of the primary BC. I too had ECE. I wonder what the significance of these supersized nodes is and if they are seen more commonly with ILC. I've tried to convince myself that it means that the BC wanted to travel but not too far!

I also had a luteal phase defect, 2 miscarriages and took Progesterone for the 1st 13 weeks of my 4th pregnancy. I had no problems with my 1st pregnancy at age 29. First child born when I was 30yo. Menarche at 14yo. Always had monthly regular periods. Breast fed both children for 7months.

Katarina

Hollander, I too am so sorry for your story but glad you are here and sharing it with us. It is more helpful than you know. 

I too use everything in the arsenal and wouldn't do it differently. However, I'd rather to do it with more information that is specific to ILC. As we've all noted, that's really difficult. We're outliers and researchers always like to ignore outliers when running statistics. I know that's true as I used to do research with this approach, throw out the 2% of outliers. (Although at closer look they were always the most interesting cases)

I don't mind being an outlier. It's also the same with prognosis, they can't tell you as they don't really know. That's the up side of being an ILC outlier.  

Hollander, you are truly inspiring. I am "not" surprised you are living a relatively painless and fully engaged life. I think your story is again part of the upside of being an outlier.  

Best,

Kat

Momine

Lisa and Pharaoh, I have had similar thoughts, 1. that an awful lot of us are DXed in our late 40s, and 2. that ILC is slow-moving. 

This means that those of us DXed in our 40s must have been walking around with pre-cancer and early cancer when very young. Because ILC is difficult to detect, we end up with stage 3 cancers. So it seems to me that one really important area of research for us would be better and less invasive detection methods, like a blood test for example. Something that would allow docs to screen young women easily and routinely.

Momine

Pharaoh, you would like my doc then One of his "things" is kicking cancer ass in older patients:

Ted Talk-Older BC Patients

By the way, I had micro-calcs on the "good" breast. All the docs swore up and down that it was nothing. Once we lopped lefty off (at my insistence), the lab found LCIS all over. 

MsPharoah

Momine, such an interesting presentation and definitely on point to my concerns about under treatment of the "elderly".    My donation dollars go to supporting new treatments for breast cancer...as long as we have the same old heinous chemo and radiation treatments, we will have women of all ages being under treated because they want to avoid the side effects, which while I admit are not small, are nothing close to the effects of metatastic bc.  My mother died at age 55 of bc, diagnosed at 50, leaving several of my siblings underage orphans.  I don't know if she had lobular or ductal.  I do know that she had mastectomy, radiation and chemo.  Hormonals were not available then. 

It pi$$es me off that the research shows that current chemo is not very effective against lobular...that encourages even more docs to not recommend chemo to the elderly (and the young) And it makes women with lobular feel that they might as well forgo chemo.  Lobular may be slower growing, but it is still a killer and we need better treatments. 

By the way, your doc is a cutie!

MsP

smrlvr

Here is an interesting story for you. I was tested for the BRAC gene mutation because my fathers mother had BC. She was diagnosed in her 50s.  Had mastectomy, no chemo or rads.  Mets to the bone when she was 73. I don't know if it was lobular, but definitely slow growing.  My test was negative, but the counselor said there may be other hereditary factors that researchers haven't found yet.  So my mother went through menopause at 41.  We don't know why.  She also has big breasts, like me and also very dense.  In her forties she kept getting cysts. They were all benign, but her doctor said she could see a breast specialist.  She was put on the drug evista, which blocks estrogen like taxomifen. Subsequently, she has never had BC. So this is definitely hormone driven.  I think it is worse if you have dense breasts.  Here in New York they just passed a law that says if a patient has dense breasts (as seen via mammo), they must be counseled and offered further testing. Too late for me, but will benefit others. My mom was lucky that she was post menopausal and could take evista. Seems to me tamoxifen could be offered as a preventative, but I don't know if docs would be willing, and who is a good candidate?

Momine

MsPharaoh, I will be sure to tell him next time I see him Although, his head is plenty swelled already actually. Classic surgeon, diva all the way.

BTW, that thing about chemo not being effective in ILC is a bit of a misnomer, IMHO. The fact at the base of the assertion is that when using neo-adjuvant chemo, you are less likely to get a complete pathological response in lobular, as compared to ductal. However, a complete response is not the norm in IDC either (as best as I remember, if wrong, someone please correct me). Outcomes after chemo are similar, although the recurrence timeline is different in ILC.

ETA: found a source:

"A pathological complete response (pCR) was achieved in 1% of ILC and 9% of IDC (P = 0.002). The outcome at 60 months was significantly better for ILC, but histologic type was not an independent factor for survival in multivariate analysis." http://annonc.oxfordjournals.org/content/17/8/1228.short

MsPharoah

Momine, I spent a lot of time on the ask an expert site that Johns Hopkins hosts.  Lillie, the expert, is a consistent voice for the lower efficacy of chemo for lobular.  If she is making those statements based on neo adjuvant failure only, then she should couch her comments in that manner.  When I was making my chemo decision, I was quite disconcerted to have an intermediate oncotype score with what was purported to be a chemo-resistant disease.  So, like everything, I took that all with a grain of salt, went to chemo class and bought a good wig.  LOL. 

Breast cancer sucks at all ages, however, when I was diagnosed, I was able to find comfort that my children were happy, grown and self-sufficient and that my husband and I were at the most affluent time of our life...able to afford household help, best medical care, etc.  At our cancer center, there were women who couldn't afford the co-pays for pre chemo steroids, or the over the counter medications they needed during chemo and radiation...or lymphodema and mastectomy garments.  It feels good to be able to contribute monetarily to the cancer center so they can provide these important services for free.  

Momine

MsPharaoh, I find that rather baffling, the expert thing that is, because everything I have seen points to ILC patients having outcomes, after chemo, similar to those of IDC patients. The differences are the lower complete response in ILC and a different recurrence timeline. We tend to have less recurrence early and more later (relative to ductal).

If lobular responded so badly, there should be some significant difference in outcome. In fact, the paper I posted above concludes: 

"ILC appeared less responsive to chemotherapy but presented a better outcome than IDC."

So I really think they are basing this statement about responsiveness on the low CPR, which seems to be somewhat misleading and even irresponsible.

hollander

Momine, I agree that your doc is cute!  I think I could even get excited about appts. if he were my MO  But I'm very happy with mine, so I will stay put.  Plus airfare would start to add up!

I agree with all of you about the lack of funding and research for ILC.  I think our MO's are doing the best they can with the limited knowledge they have about our specific disease.  But if researchers are spending time and money to discover that there are so many types and "subsets"of bc, why don't they do more with that knowledge and start chasing causes/treatments/cures for some of those?  Does the money go for the quicker positive results that they can get from treating noninvasive and very early stage bc?  That just feeds into the whole pink machine for the cure monster that hasn't done nearly enough to find a cure.  But that's a rant for another day... or month.

I also wish that better statistics were being kept.  I think it would be great if every newly diagnosed bc patient (not just ILC) filled out a very detailed questionnaire covering all of the points made on this thread.  Track each with an assigned number to protect privacy.  Results could be compiled in a single data base, and follow ups could be done annually, or as additional dx is made.  Stage iv stats are "irregular" at best.  Staging stats currently being kept are only based on original dx, so in those records, I'm still considered 2a, even though I have mets and am stage iv.  That's how flawed the system is.  It's confusing, I know, which I think makes it all the more difficult to get the ball rolling in the direction it needs to.  I think that the 5 year survival statistic is very misleading.  My impression was that if I made it to 5 years without a recurrence, I was home free.  What a shocker when I found out after 6 years, the beast had returned. That 5 year period is and has been the magic "cured" number for a long time.  It would be nice if stats were kept later than 5 years, and also by cancer type.  Until my dx last year, I had no idea that 25-30% of women originally dx with early stage bc will end up with stage iv at some point.  That's another very general stat, with no detail as to age, types of bc, ER+/- or HER2+/-, etc.  No wonder so many people (docs included) consider bc treatment as much an art as a science.

I know there are dedicated researchers out there working hard to find out more about bc.  I just wish I knew how to get some working on ILC.  Who knows, if they started looking more maybe they'd find an easy cure/prevention and could take our 10% off the books for good!

 I didn't post earlier that I had baby #1 (son) when I was 31, baby #2 (daughter) when I was 34, and breastfed both for a year, with no issues or complications.  Oddly enough, after I had my daughter, my periods became regular (28 day cycles) for the first time in my life!  Periods stopped for good after my 2nd chemo treatment in 5/07, which was also weird, going from normal, no issue periods to.... nothing.  At original dx, all of the docs I saw said there was no way to know how long the tumor had been growing, but it had been years.  

Thanks for all of your kind words.  Wish I could do more to keep all of you from ending up in the stage iv club.  Hope you are all staying warm and having a pleasant Sunday!

Momine

MsPharaoh, Here is another study that specifically tries to answer whether chemo "works" in lobular (it concludes that it does). If you read, you will see that they also refer to the low CPR in lobular and take this to be the basis for the idea of low response in lobular.

Chemo in ILC

"After adjustment on these three confounders (age, grade and size of the tumor), there was no difference between lobular and nonlobular tumors on RFS (either local or metastatic), nor on OS (Figure 1)."