ILC-Specific Questions in Making Treatment Decision

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.

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

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

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.

@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.

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!

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

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."]

Hi Lily55:

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

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

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.

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:)

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.

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?

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?