ILC-Specific Questions in Making Treatment Decision

614

Dear Phoebe:

I am sorry that you are going through this.  Luckily the doctor reviewed your slides (or whatever he looked at) again and he found the Invasive Ductal Carcinoma.  It is amazing that it was missed.  However, hopefully, whatever tx that you decide to have from this point forward will eradicate the bc completely from your body and halt any recurrences.  I know that this is such a shock to you because you thought that you had completed your tx. 

Good luck and I am sending you prayers and positive thoughts for a full recovery and an easy tx plan.

doris7125

Trying to make treatment decision as well. ILC, IIA, 1.8 cm tumor and Node positive 1/1 at .5cm, extensive LCIS same left breast, Onca=23, ER/PR+, HER2-. Lumpectomy, then chemo - just finished chemo. Trying to decide BMX or just radiation and AI. Age 56. I am being told that I need to do BMX before radiation for best results vs. making that decision a little later. Feel like I am lost in the statistics of odds of re-occurence of same cancer or a new one. Feeling like due to ILC hiding and lots of LCIS (increasing contralateral risk if I am understanding it thus far), that I should go for the BMX although it will be a nightmare with work responsibilities. The chemo addressed the systematic/lymph risk, the radiation addresses local risk and node issue, the HT addresses all 3 types of risk. Sems to leave the BMX addressing local risk of same or new happening and mostly giving me more piece of mind vs. waiting every 6 months for scans/mri's. I think my surgeon and onc were "ok" with me doing BMX given finding the LCIS and it being ILC vs. IDC. Basically said it didn't reduce medical risk but helped reduce mental "risk" issue. I always seem to be a "judgement" call. I just don't want to find another primary 2 years from now and be sorry I didn't do a BMX....I know it's personal but thoughts to help? I am reading up but have chemo brain so not absorbing quite as fast....

Anonymous

Hi Doris7125, I opted for a BMX finally because of breast density. I didn't want to take a chance missing anything from a mammogram, and my MO told me that I'd still be on the "mammo/US" plan. I was glad I opted for BMX since post surgical pathology reported mild hyperplasia, ILC, in the "good" breast.

It is a judgement call. My MO told me I didn't need to do the surgery, since I'd had radiation and lumpectomy (plus 5 months chemo) but it seems no one factors in the nature of ILC (sneaky) and breast density.

Claire in AZ

doris7125

Thanks Clare - this is exactly my fear. Helpful to hear.

Anonymous

BTW, Doris, I kept my nipples, for some semblance of normalcy when I looked in the mirror. My PS biopsied the tissue in and under the nipples before the big surgery (there are two surgeries--one "lifts" the nipples from their blood supply from breast tissue, so they take the blood from the skin instead--it's an office procedure, doesn't hurt). Anyway, there was no involvement according to the biopsy of nipple tissue, so I opted to go with nipple-sparing surgery and forego the tatts, skin grafts that come with the "nipple remodel" if they take the originals in the BMX. I was so sick of multiple surgeries.

Now, of course, I worry that there might be one or two cells left in the nipple tissue that might decide to travel somewhere else, since a pathology doesn't test every single cell. But I'm taking care of my health and life in other ways (3-5 hours of exercise a week--usually much more; avoid plastics, eat organic, low sugar, no alcohol, I don't smoke anyway, normal-low body weight, etc.) so I hope what I'm doing there will help hold a possible recurrence at bay for the rest of my life.

Do I miss sensation in my breasts? You bet I do. Do I miss the worry that would come with every single scan, exam, etc.? Not on your life.

BTW, you're getting chemo right now, yes? How's that going? Hopefully you're making it through...well, of course you are, but I hope it's minimal side effects. Anyway. TMI. But I didn't know about nippple sparing surgery till Angelina Jolie went public with her breast surgery, ironically a few months before mine. So I thought I'd share.

Hugs,

Claire

Girl53

Doris: How are you? Just read your post about making treatment decision. I am ILC, too....small and non-aggressive, I understand (no chemo, probably), and also have LCIS. Also have heterogeneously dense tissue and very strong family history. Genetic tests pending. Have been doing tons of reading, and there is so much information out there. Feel so torn between lumpectomy/rads/AI and CPM. As you said, I don't want to find another primary down the road.

Have surgical oncology consult at major east coast breast center this coming Monday and am desperately hoping the doctor can help me make a wise treatment decision. The prospect of having my breasts removed makes me so sad and afraid, but I also don't relish thought of years of worrying about recurrence or contralateral occurence. Want to try to get a good grip on real risk estimate and decide from there.

Who ever wanted to make this kind of decision? Hope you're well today. Let's stick together!

phoebe58

thank you 614, I am feeling calmer this week ...... just back from routine visit to see my out of town PS and she did not seem too alarmed by the double diagnosis, or that it would even change anything treatment wise. The new path report will be ready for me to pick up tomorrow, and am curious about the details. I have a ct, a bone scan, and another chat with my med onc over the next little while, to help with decisions.

Claire, despite all my reading I had not heard of a nipple lift in advance... ok period!! I hear you about the extra steps, but I could not avoid it I had to lose nipple on Right tumour side as per original plan [tumour too close], but when they did biopsy on nipple sparing prophylactic mastectomy Left side [I guess they lifted it then] there was some LCIS in the nipple duct as well as several other foci in that breast, so returned to have that nipple removed too, but they were able to keep the areola. I too am taking care to live an even healthier life, with the occasional wine!, and am sure that contributes positively.

Doris, I had quite an extensive surgery - bmx and diep, and am 6 weeks out. It has gone very smoothy and am recovering well.

Lily55

ILC stage 3 with 7 nodes affected, did not have chemo, took letrozole for almost one year, then Aromasin for almost 18 months, cannot tolerate either, make me feel ancient and stop me sleeping, walking normally etc etc..........so have been given Tamoxifen but I am aware it has been found to be ineffective with lobular cancer, as the cells over-ride the tamoxifen effect.......so I feel very reluctant to take it but I know I should take something as have it drummed in to me every appointment how high risk I am (not very helpful!).

Advice or info please? Is it worth trying Anastrozole?

JohnSmith

@Lily

Tam is ineffective for a subset of ILC patients. Not all. Researchers haven't quite figured out who benefits and who doesn't. Admittedly, it's frustrating. It's not just the ILC cohort though. I believe there is a IDC subset that doesn't respond too, although it's a smaller percentage of IDC than ILC.

The University of Pittsburgh, and perhaps others, are working on this question and hopefully getting closer to an answer.

I know nothing about AI's, other than some clinical trials have shown them to be more effective. I'd seek the advice of oncologists (perhaps even researchers) with interest in Lobular.

Or better yet, craft a really good thread... listing all of the AI's and then ask which ones are used for Lobular, what have been the side effects, etc.

Anonymous

Phoebe58, hi--it happens. My PS was about 70/30% sure I'd be able to keep my nipples, as long as they adjusted to the new blood supply. They did, luckily, but it's not a given, for sure. Oh well. We are here, and in relatively good spirits, right? Nipples are simply cosmetic at this point for me.

zinny

Holy craziness Phoebe58, you have weird stuff like me What a shock to get those results that far out.

My PS did not discuss nipple sparing and I only heard about it from a friend with an American connection. What is your take? Also, I am curious about the Diep vs implants and why you chose it? As much as I would love to get rid of my muffin top, I am conceded about having to be delicate with so much of my body for so long.

And, I love the "we are all starlight" tag. Love that book. Sad that my kids are oblivious to its magic!

Anonymous

PS about nipple-sparing: if you choose to go this route, ask your PS to biopsy the tissue under the nipples to make sure there is no obvious involvement. Of course we can't catch any micro-involvement. But for me, I simply wanted to be done when I had my BMX and recon. I wanted no TE/inserts/skin grafting/tatts, etc. I was, and am, so tired of strangers touching my body over that two year period (dx 9/29/11, surgery 7/4/13) that when I left that hospital, I needed to know I was DONE.

Because I chose to stay small, as I was before--34-36 A-B, I needed no tissue expanders, so I could have the BMX and implants done at the same time. Done is the operative word, pun shameless. Luckily I had no infections, I heal easily and with minimal scarring because that's just my body, and it was a non-event; I even had nearly full range of motion when I left after two endless days and nights in the hospital. I think it had to do with all the bikram yoga I practice. Anyway. My choice was just a choice and there are many options.

Claire

jojo9999

JohnSmith,

Thank you for clarifying. Can you post references to the articles that find tamox ineffective for some ILC patients? I saw my MO a few months ago, had so many questions (including the tamox/ilc problem), he answered all of them, but I can't remember his response! He is definitely up on all the research and saw no need to switch me to AI until after I hit meno.

Thanks

JohnSmith

@jojo. There's more papers discussing Tam resistance in ILC, but these links below are bookmarked for quick access.

1. Invasive lobular carcinoma cell lines are characterized by unique estrogen-mediated gene expression patterns and altered tamoxifen response.
This is research done at the University of Pittsburgh, perhaps the only place in the US that has special interest in ILC. Remember, this is the instituition that just launched the first ever clinical trial focused on ILC, which can be read here: ILC Clinical Trials.

2. Second-Most Common Breast Cancer Subtype May Benefit From Personalized Treatment Approach, UPCI Finds.
This link summarizes the scientific Abstract from above.

3. Lobular breast cancer - the most common special subtype or a most special common subtype?
This is an editorial on the need for more ILC research. Here is an excerpt alluding to the unfavorable hormone therapy response:
"A further unresolved topic regarding invasive lobular breast cancer is the contradiction between the very high proportion of ER+ lobular breast cancer specimens (more than 90% depending on the study) and the comparably low efficiency of anti-estrogen therapy in this patient cohort compared with invasive ductal breast cancer with a much lower proportion of ER+ specimens (for example, [8]). This is not properly understood on the molecular level, but is of real importance in clinics."

BarredOwl

Hi Jojo and John:

I am a little confused by the quote above in item (3), because the abstract of cited reference 8 concludes: "ILC is a distinct entity of breast cancer that responds well to adjuvant HT." (HT = hormonal therapy) The full-text was not accessible, so maybe I am missing something.

Anyway, it sounds like some interesting research is going on, including some work in ILC-derived cell lines, to better characterize ILC. One day, this early-stage research may pay off in the form of new, more targeted treatments. It is also good to see a trial focusing on ILC.

For me personally, with a cancer diagnosis in hand, the advice of my treatment team, which hopefully incorporates the most relevant and current clinical information, is what I have to rely on for decision-making purposes. I do like to check that their advice is consistent with evidence from recent clinical trials, preferably randomized, prospective trials if available, and with current consensus treatment guidelines.

By the way, the consensus treatment guidelines from the National Comprehensive Cancer Center (NCCN) (version 3_2015) support the use of adjuvant endocrine therapy (and of tamoxifen for pre-menopausal***) in node positive, hormone receptor positive, HER2 negative, invasive lobular or ductal cancer. See also, the ASCO guidelines re tamoxifen in pre-menopausal invasive cancer.

ASCO guideline: http://jco.ascopubs.org/content/32/21/2255.full

BarredOwl

[***Edited to add additional information from Guidelines regarding endocrine therapy for first five years in the pre-menopausal situation described above in bold (interventions after five-years vary with menopausal status):

"Tamoxifen for 5 y (category 1)

± ovarian suppression or ablation (category 2B)"

Note: "Aromatase inhibitor for 5 y + ovarian suppression may be considered as an alternative option based on SOFT and TEXT clinical trial outcomes. Pagani O, Regan M, Walley B, et al. Adjuvant Exemestane with Ovarian Suppression in Premenopausal Breast Cancer. N Engl J Med 2014; 371:107-118."]

Lily55

thank you John, sadly I have no choice in Oncologist and he only says no real difference between ductal and lobular cancer.........

BarredOwl

Hi Lily55:

You asked about anastrozole (Arimidex). Above in this thread (page 1), 614 notes she had an oophorectomy and is taking anastrozole.

BarredOwl

ShetlandPony

BarredOwl, I always appreciate your keen intelligence and articulate comments. Regarding the contradictory quotes, some of the older articles that discuss ILC speak of endocrine therapy without specifying what kind of endocrine therapy, so that seems pretty useless to me. From my search of the literature, I conclude that ILC is a very hormone-driven subtype, but that a subset of ILC may be de novo resistant to tamoxifen but respond well to aromatase inhibitors. I understand that the oncologists want to base treatment on consensus guidelines derived from very large, randomized, prospective trials. But we don't have such trials specific to ILC! I believe in evidence-based medicine and NCCN guidelines. But with such an understudied subtype, I want to gather any hints, any evidence, from smaller studies that I can find, if that will help me choose between reasonable alternatives. Until ILC is actually studied properly, what else do I have? I don't think the oncologists who treat us have time to search for and synthesize the hints contained in smaller studies. The awful thing that I haven't said yet, is that back in 2011 and 2012, I felt I was higher risk than my low oncotype score indicated because of having ILC, a palpable ILC tumor, being premenopausal, and having tumor cells in the sentinel node (and with ILC's typical single-file pattern maybe that just looked like ITCs but was really a met). I consulted three medical oncologists and they all said to stay on tamoxifen. I didn't want to do hard treatment if I didn't have to, so I did not heed my own advice to have an oophorectomy and go on an aromatase inhibitor. It is very hard to wonder now if things might have turned out different. I know I am only one person, and I don't suggest anyone base their own treatment on some other patient's experience. I know I might have recurred anyway, but it is hard to wonder.

(One of these days I hope to gather all the papers I have on ILC and post links.)

BarredOwl

Hi ShetlandPony:

Thank you for your nuanced comments. I agree that some MOs may be less current than others. Consensus guidelines have their limitations, and may not be applicable in a particular case or may be less persuasive in certain sub-groups. But I think they are very helpful for understanding what is generally recommended. That was really at the center and purpose of my post above.

Also, I sometimes worry that a less scientifically inclined reader might be influenced to decline tamoxifen because of observations from a non-clinical study.

Although my diagnosis was IDC, I sympathize with the challenge of not having the most applicable trials or the most beautiful and robust data available. I had some less common things and unknowns in my presentation, and I read a number of smaller studies and some retrospective studies. I took print-outs of two retrospective studies to the appointment with my MO to ask her about the reports and to check my thinking on the subject. I still second-guess my decisions.

I was just about to edit my post above with additional details from the guidelines about pre-menopausal options, and will do so now. You have mentioned the further option of oophorectomy plus an aromatase inhibitor (AI) for some pre-menopausal women. That was what 614 chose, as she was pre-menopausal but tamoxifen was not a suitable option for her (specifically, bilateral salpingo oophorectomy + anastrozole (Arimidex)).

BarredOwl

phoebe58

ha -- yes Claire, nipples a cosmetic thing for me too, and I will have some sort of origami swan nipples in a couple of more months and then tattoos!

Zinny, thanks! I chose Diep after much consideration -- less for the muffin top [though loving the flat tummy] as mine really was just a fairly small pooch [how the surgeon got a set of C's is beyond me!], more so to have warm natural looking breasts, and not having to fear implant contractions -- apparently own tissue does better post radiation [there was a chance I would need radiation--I was considered in the grey middle zone -- but after much thinking am choosing not to as I really don't want to risk lymphedema -- but will stay on Letrozole which I am tolerating well and get regular checks etc]. Plus, what tipped the scales was being able to see a live reconstructed pair of girls done in 2008 that looked so real.... she turned out to be my surgeons first diep and from my home town!! I certainly did have initial concerns re the length of surgery [11 hours but I snapped back very well] and the longer recovery [which has also gone far easier than I had envisioned] but I have been lucky and am healing quite well and quickly, and had lots of support. I would do it again.

zinny

Thanks, Phoebe, Claire. Super helpful. Hoping to go smaller ( who in their right mind wants double D's?!) Maybe if i did yoga too? Though as a friend of mine said, that would be exercise and entertainment ( for others) all in one. Guess I will have to look at some pictures - my PS told me to, but I have been avoiding.

Jojo, I am premenopausal but my MO is choosing to put me into menopause now so that I can take an AI.

Anonymous

Hi all, I hope I'm not getting off topic, but in my head and heart I believe yoga saved me from depression from the dx and so much more. I practice the bikram kind, which is 1.5 hours a class and quite challenging (went regularly--2x week during chemo and rads and surgeries, yep) I even practiced with my drain from my lumpectomy tucked into my yoga shorts and was just more mindful of pulling--the tubing was long enough, of course. I practiced with my bald head out there for all to see. I practiced with my new foobs and was careful not to lie on them during floor series. It all worked.

My yoga community supported me completely and I felt I could go there without judgement about the way I looked and do something positive, something that was hard and strenuous, and something that relieved my fear and anger about the dx and subsequent tx.

I needed to feel powerful in the face of the powerlessness and frustration that comes with the disease, and doing this kind of yoga did that for me. I felt powerful. I felt like it helped me recover from everything much faster. I do feel like it might be keeping me alive, even. I still go 2-3x a week and wish I could go more, but I've added spinning and more walking/weight lifting to my routine.

Teaching full time at our local university disallows for more exercise, but my husband believes I'm getting more than my share. At any rate, it's one of the few active moves I can take to help myself.

We are our own best advocates for our health--no one cares more about it than we do--and that's my philosophy. Be proactive. Don't wait. Move. Move a lot. And check out the nurses study; here's a quote and the link from a handout by Dana Farber Institute:

NURSES' HEALTH STUDY

Nurses' Health Study data revealed women who participated in moderate exercise (such aswalking at an average pace) for 3-5 hours/week had a 50 percent lower risk of breast cancer recurrence, breast cancer death,and death from any cause.

http://www.dana-farber.org/uploadedFiles/Library/s...

zinny

I had my first elliptical workout 2 days ago, trying to not bounce, and it felt so so so great to sweat like crazy again. Walking is nice and all...but there is nothing like that red in the face kind of exercise:)

Anonymous

I found that running now, with my cosmetic boobs, means I don't have to wear a bra. They are under the chest muscle and as such, don't bounce much if at all A nice perk, pun intended, dark humor and all.

JerseyGirl22

Hello everyone...

I'm ILC with some pleomorphic features... I'm heading for neoadjuvant chemo cycle 5 of 6, to shrink the tumor (down to less than 3 cm, from 6.7cm) on Monday 10/12, final cycle Nov. 2. Then the docs say surgery (to be determined after last cycle of chemo and MRI), more than likely BMX with radiation and 1 year of Herceptin, before starting with Tax or AI. I'm pre-menopausal, and there are lots of differing opinions about Tamoxifen or AIs for ILC... Shadow on MRI found A-typical cells in other breast, BC radiologist says not cancer, but I really don't want to risk it, since ILC is said to travel to other breast. One node involved, but now not detectable on physical exam after 4 cycles of chemo, so, that'll still probably be removed during mastectomy, as well.

So that's where I am. I think the whole thing driving my treatment plan is that I'm ER+/PR+/Her2+, so that gets me the year of Herceptin, and it's looking like that is a good thing, although I have a lot of trepidation about a year of IV infusion...

I'm excited to see so many who are exercising, and continuing to move through treatment. I lost 30lbs, was doing yoga, and working out before treatment. Chemo, kicks my butt so bad that walking my 225 ft. driveway up and back, and doing my stairs 3-4 times a day is all I can get before I need a nap, even during week 3 when my counts should be coming up Grrr... Docs don't see any reason to drop my dosages due to the tumor responding so well, so I have these last 2 rounds before I can get some energy back.

Thank you all for being out here. John and Shetland Pony, and many others, thanks for all the research and sharing of knowledge.

Girl53

JerseyGirl, you rock. Wishing you continued best on your upcoming cycle. So glad to hear you are moving as much as chemo will allow...I am 53, headed for CPM with SNB in a few weeks. Am exercising more now than in my whole life: I have a 13-month-old standard poodle who needs two hour-long walks a day, and I work part-time in a library shelving books and pushing very heavy carts.

In my former, corporate life, I was a writer who sat on my derriere all day. Even with all the exercise now, I still have to push myself some days; I am living proof that "a body at rest tends to stay at rest" LOL. Am inspired by your energy and will try to emulate! Keep up good work.

artistatheart

I had a second opinion appointment yesterday and the Onc told me that they treat ILC the same as IDC?? Anyone else been told that? I thought there were some treatments that work for one but not the other and vise versa?

Meow13

artistatheart , I had one of each and and my onco didn't say he was treating for both. I just got the hormone therapy. Chemo would have been either ACT or CMF if I had done the recommended chemo. I have idea they standard treatment is the same for IDC or ILC

zinny

Hi artist... I wonder - that may be a stage dependent thing? What they have said to me is that lobular's are generally slower growing and relatively more hormone sensitive and less chemo sensitive, so with lower grades they may not choose chemo, but with higher grades may treat them both the same way?

ShetlandPony

When I look at the NCCN guidelines for physicians, treatment is based on tumor characteristics, lymph node involvement, etc. with no mention of ductal vs.lobular. There is evidence that these subtypes may differ biologically, but as yet nothing to dictate different treatments. Researchers, especially at the University of Pittsburgh, have been investigating whether certain hormonal therapies are better than others for lobular.