ILC - The Odd One Out?

Nocompromises2013 · February 2014

Momine -good on you .... I think we all have to be optimists to move forward from Dx and get back to some semblance of normality without stressing everyday

Good to hear your optimism and knowledge re ILC -

Just to buck the trend - I have never been told I have dense breasts - maybe that's why mine was found smaller than average ? - who knows

Yes every year that goes by seems to bring new theories and treatment protocols -

Lily55 · February 2014

nocompromises I would love to know the results of your mini survey and patterns you found, i promise not to repeat them anywhere!

Anonymous · February 2014

Dear ILCrs,

I am loving all our posts. Momine, I am with you on optimism! I remember my girlfriend, whose 3 y. o. was dx with leukemia in 1984, telling me that "it's all about buying time till a cure is found". BTW, he's 32, a daddy, and perfectly fine.

So for us it's about buying time. It tells me we have to be relentless about continuing to be proactive with our health and I mean holistically, not just physically, for the rest of our lives.

Newcomers, I'm willing to mentor you through your chemo and rads, if you are having them. I am on these boards often and read my private messages regularly when I get them.

Claire in AZ

Lojo · February 2014

Wildflower -

I also had an arthritis flare up right before my diagnosis. I'd had some issues in my foot for several years, but it had been stable, then right before my biopsy, I had some excruciating pain in my foot, some new pain in my shoulder, and then I remembered earlier that summer some costochronditis (which has occasionally been a problem since I was in my 20s) and some carpel tunnel issues (which I attributed to too much desk work). But - interestingly, since my surgery the arthritis is at a very low level and most of the issues except my foot are gone. Not sure if there's a connection, but it's interesting and my docs shrugged it off. I know my mom, who had pre-menopausal BC - though I don't know the type, had pretty serious arthritis in her hands (enlarged knuckles, etc) from her late 30s. Look into whether there are different meds for your arthritis that would work - I know there are some anti-inflammatories that are more recommended for those with cancer . . . there are a good # of studies suggesting aspirin might decrease chances of recurrence - though aspirin carries its own risks (bleeding, stomach ulcers, etc).

I would also say that I really don't think we should focus on whether anything we did caused this - - - there are lots of people who are way more stressed than me, who eat a terrible diet, who smoke, who don't exercise, and who will never have to deal with this. It's a crapshoot. It might have been that one ray of ultraviolet light 10 years ago that triggered one cell to change - and there's not a thing that could have been done about it. It's genes + environment + chance.

Best

Wildflower50 · February 2014

bec65-- thank you, it's so nice to find other women who have either going through or gone through this process. I too have dense breasts and was under high stress so I guess that is the common denominator. It's hard to not try and figure out how I got here as I sure don't want to do this again-- I know everyone feels the same way about that but also realize I'll never really know. I will check out the chemo forum as well, I appreciate the recommendation.

Toomuch-- I fixed my settings to show tumor and treatment. I did a lumpectomy in December but did not get clear margins. Due to the aggressive nature of my cancer, they wanted me to start the chemo and have additional surgery later.

Lojo--interesting background with the arthritis, perhaps stress caused both??? I'm off all the arthritis meds --my rheumatologist told me my arthritis will go completely away and into remission for at least two years after the chemo. I have had two rounds of A/C and it's not gone yet but I still have along way to go on the chemo.

I'm happy to have found all of you for this journey.

Memphishairdo · February 2014

hello....

2nd post on these boards ever.

I have been following this thread with great interest as a fellow ILC'er.

Wanted to add my stats for the informal poll.

Age at diagnosis: 49.7

Incidental finding during biopsies in both breasts for micro-calcs. (ILC found in left breast).

Even after biopsy confirmed ILC...this cancer covering a 7cm area was never seen on any imaging...not USG, not breast MRI or any of the previous 11 Mammos during the previous 11 years (Mammos started at age 38 because of dense/lumpy breasts.)

Menses started at age 14

2 pregnancies...age 22 and 25

Dabbled with smoking in teens...always around 2ndhand smoke growing up

Very light and occasional drinker

Stressed in years leading up to diagnosis....running a small business, raising a family (but then who isn't during this phase of life)

My BS (a 25+ year BC guru) at Dana Farber says my ILC was growing for 8-9 years.

My Onco score was 8.

Younger sister (by 3 years) and only sibling was diagnosed 3 years before me with DCIS (her BRACA was negative) My BS predicted it would be. No known prior family history.

Treatment: lumpectomy w/SNB, reexcision lumpectomy, BMX w/ tissue expander reconstruction, tamoxifen for 6 months (caused 2 endometrial biopsies for uterine thickening and finally a DVT) changed by MO to Lupron 22.5 injections every 60 days plus arimidex orally. Was menstrating every 25 days prior to diagnosis like a rock star. Lupron finally shut period down in December after 4 injections.

Thank you all for sharing all that you do about ILC/BC and your experiences and thoughts. This is a great place to land to beat back the fear monster.

Danishgirl66 · February 2014

An OB/GYN friend who is just retiring from a big practice in southern CA told me she has seen a big influx of ILC in her patients. I didn't ask her about age.

My ILC was diagnosed when I was 62. Unfortunately I had been taking HRT for about ten years.

Lily55 · February 2014

i anticipate ILC will increase as hormones are in so many foodstuffs and even water.......

Holeinone · February 2014

My BS cringed when I told him I thought on I was on birth control pills for 18 years or more. I had fibroids and GYN Dr. was trying to control my heavy periods...in hindsight was crazy, I did eventually get a hyster..

Nocompromises2013 · February 2014

well Hin1 for what it's worth I was only on BCPs for about 18months 30years ago - and I am still here too.

Lojo · February 2014

And Hin1, to echo nocompromises, I was never on BCPs (thinking I was lowering my risk for BC! Oh well).

Trisha-Anne · February 2014

I was only on BCPs for around 4 or 5 years and that was 35 years ago :-)

Katarina · February 2014

All the docs I've spoken to have said they have seen a big increase in ILC in the last few years. I'd sure like to find an ONC or center that specializes in it. I still haven't found the practicing expert.

I wish I had it but I deleted the bookmark. It was a report done by Dr. Christofanini or some spelling like that (MD Anderson) who was involved in study/ report that showed ILC progression spikes at the 2 and 5 year marks "if at all", then smooth sailing for years afterward. Has anyone else seen / read this Oncology report?

Hugs,

Kat

karen1956 · February 2014

I was only on bcp for a couple years in my 20's and then for 2 or 3 months in my mid 40's due to peri-menopause...always had awful side effects....when I was on them in my 40's for a couple months, gyn commented that they just made things worse!!!! I had hormone deficiencies when trying to get pregnant and had to take progesterone to maintain pregnancies.

On another note, I worry about my DD#1...she has been on bcp for 11 years due to ovarian cysts...She developed them when she was turning 17 and had a couple bouts including ruptured cysts....None of her doctors have told her to go off them, even with my Dx of BC....She is married and going on 28 and soon going to go off to try having a family....I worry about the effects of being on bcp for so long and starting at such a young age.

Katarina · February 2014

Only study I've read on ILC recurrence and survival probability.

2005 Journal of Clinical Oncology: Massimo Cristofanilli,

http://jco.ascopubs.org/content/23/1/41.full

In (Figure 1) you can see the recurrence points.

This article also speaks to many of the points discussed here: dx at higher stages, median age older, etc.

Anyone have anything more recent?

Hugs,

Kat

BettyBoo · February 2014

I think this may be interesting, not published until 2013.

http://download.journals.elsevierhealth.com/pdfs/j...

It's not a big study and it relates to patients in the late 1990's.

BettyBoo · February 2014

This one published in 2012 relates to data between 1995 and 2008.

http://meetinglibrary.asco.org/content/95737-114

Momine · February 2014

Betty, thanks for posting those.

BettyBoo · February 2014

I found one more, http://cancerres.aacrjournals.org/cgi/content/mee...

Data from patient follow up 1999 to April 2012, 179 patients ILC post menopausal.

Momine · February 2014

Betty, thanks again.

Woodylb · February 2014

this is to add to your poll, i was dxd at age 52 postmenopausal with stage IIIb ILC er, pr positive her2 neg. 22/23 nodes 2/2 axillary , tumor 1cm. Even though i had for the past years been having mammos, showing micro calicifications and multiple cysts ILC never showed on mammos, ultrasoubds and even mris even before surgery. My ILC was discovered because of a lumps caused by a strained muscle , which was biopsied with negative results for cancer. It is when i decided to remove the lumps that the surgeon discovered a very tiny tumor which proved to be ILC a lymph nodes resection and removal showed the metastased nodes and extensive numbers. I had ACT for 8 cycles followed by radiation and Femara. Then this year just before xmas went to the doc for some pain in the hips, xrays showed bone islands which the doc said was not cancer. I took the xrays to my onc who asked for a hip mri which came back inconclusive, then he requested both a total bone scan and a contrast frontal CT scan. One week shy of three years i got the stage IV diagnosis with mets to my liver and still inconclusive for bones. But my onc did not wait to confirm the bones involvement he started me straight on carboplain/gemzar chemo.

ILC is unpredictable no specific treatments for ILC are available the ones which are being used are the ones for IDC . I believe i had ILC in my early 40's because the onco surgeon said it has been there for years, i had my first child i was 37, and my period at age 10. I had some hormonal treatments for my second lost pregnancy. No family history of breast cancer.

So to all ILCers out there i wish you good health and long life but whatever you feel or anything different you feel after treatments please check it out and keep checking. Know your bodies and check every time something is not right. Wish me luck )

RobinLK · February 2014

Woody, thank you for posting this. I personally feel that ILC is a sneaky bitch. I completely agree and appreciate your reminder to "know our bodies." That is how I found mine and will always be hyper aware of things that do not feel "right" for me.

Hoping your treatments are effective in slowing and/reversing the progression to mets you have found.

Lily55 · February 2014

hmm 60% fewer years of survival once diagnosed stage 4 ILC is not good news

Nocompromises2013 · February 2014

ES, those stage IV survival ILC stats made for sobering reading Lily -

karen1956 · February 2014

I guess I keep my head in the sand in many ways!! I haven't looked at any of the links. I no longer look at statistics. My onc used to give me all the stats for me, and I listened to them for a couple or so years and it was sobering....Then one day I threw all the statistics out the window and now my statistics are 100%...Either the beast will come back or I'll be NED!! It has brought me peace of mind as I don't worry about the 1 in whatever chance of it coming back...now that's not to say that its not in the back of my mind, but it helps with the living day to day. I know that any day, it can change, but I also know that I've given it my all. To me there seems to be no rhyme or reason on why we get breast cancer other than we are women and we have breasts...and the sames seems to hold in may ways about progressing.

Wishing us all long years of living!!!

gemini4 · February 2014

Karen, one of my onc's said that once I'm at "x" number of years out, my odds of recurrence are the same as the general population .... And at that point, she said that, just like everyone else, my risks will include all of those that are part of life (accidents, other health issues, etc.). I can't recall her exact words, but this is helpful for me to remember when I can't see the forest for the trees. :-)

Lily55 · February 2014

what is x?! I dont obsess about statistics either as they are always out of date by at least five years, and i dont know which side i will fall..

Holeinone · February 2014

Woody,

Thanks for sharing your story, and I do wish you luck and hope in your next round of treatments to kick down those liver buggers.

It looks like you had 3 years before the stage 4 dx. I still have a hard time understanding how a 1 cm. tumor can spread so much. I have asked my RO & PCP that very ? in the last week. They both said, it's lobular, we don't know, you will never really know. My tumor was also very small, with nodal extension.

Woodylb · February 2014

Robinlk, thank you for your warm wishes, i believe and i hope i made the right decision, i did take the mastectomy option even though my cancer is multifocal. Or did the prophylactic for the other breast. IlC is sneaky, and it comes always with metastatic cells. But, even at stage III with a lot of people it never comes back. I am a firm believer that no one leaves before his/ her time comes. I am hoping to kick this one also and i know my faith will help me . Wishing you always a long long life.

Woodylb · February 2014

Holeinone,

I see you are newly diagnosed with ILC , and we have the same lymph nodes status in comparison. Don't wonder and bother your head how can a small tumor cause this much damage..ILC loves lymph nodes and it hides quite well in it. This is why there is rarely a palpable lump when it comes to ILC. The only good thing about it is that it is usually slow growing. You will probably be put on a hormone inhibitor med. femara most likely if you are menopause or another if you are not. Mastectomy will help. Live your life and enjoy it , and you will be well hopefully for a long time. A lot of people do. Mine came back at three my onc expected i last 5 at least. But no one can really tell. There are others with the same status who live long lives. So just enjoy your life and don't look back. Just be sure to do your follow ups always and report anything unusual. Wishing you a very good life and hope i will always hear good news from you. Big hugs.

ILC - The Odd One Out?

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