Tamoxifen or AIs with ILC

gretagoodtimes
gretagoodtimes Member Posts: 3
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi.....so pleased to have found this forum as here in the UK lobular has no special emphasis.Thanks to this site i have discovered the piece of research headed "estrogen-related receptor tied to tamoxifen resistance in lobular breast cancer" 2008...My onc reckons that chemo has shut down my ovaries (age 48) and i am now menopausal.His treatment plan is 2 years tamoxifen and 5 AIs...I privately took the CYP2D6 test and have extensive metaboliser status so if it wasn`t for the resistance research, should have felt confident on tamoxifen. Is there anyone out there who can point me in the direction of studies which show that AIs should be the anti hormonal of choice for ILC...my instinct is telling me to battle for the ovaries out and move onto to an AI sooner rather than later...does this make sense?....Round 2 with my onc will be going for Zometa  who will only consider this once the AZURE studies report.Has anyone any idea when this is likely to happen?...Many thanks

Greta

Treatment left mast/ FEC 3  Taxotere 3   25 rads  tamox from April

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  • Kleenex
    Kleenex Member Posts: 764
    edited June 2009

    Hi, Greta -

    I often feel that there's not enough special emphasis on lobular here in the U.S., either! I am 45, pre-menopausal (and no chemo to cause chemopause), and I've been taking Tamoxifen since Dec. 1st of 08. Allegedly, my CYP2D6 test shows that I am a "normal" processor of Tamoxifen, although I am going to get a copy of my results. My onc's plan is five years of Tamoxifen, and then we will look into Famara for a few more years after that.

    I would be interested in any information anyone has on whether there is a "preferred" hormonal for ILC. It is usually quite hormone receptor positive, so it would be a shame if it turns out that Tamoxifen doesn't work well to prevent a recurrence...

    Coleen

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2009

    Greta,  The ATAC trial after 100 months of follow-up seems to make a strong case.  This is a link to the Arimidex web site.  It discusses the efficacy of treatment; there's also a video of Dr. Budzar explaining the data.

    http://www.arimidex.com/hcp/arimidex-about/arimidex-efficacy.aspx 

    I'm taking Femara.  I also get Zometa every 6 months to prevent mets. 

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  • gretagoodtimes
    gretagoodtimes Member Posts: 3
    edited June 2009

    Thanks Kleenex and Gitane......the ATAC tial results do place Arimidex over Tamoxifen for postmenopausal women....my onc is very much bound by his hospital treatment guidelines but i will turn up armed with my flow charts to our next meeting!

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2009

    Kleenex,

    These are studies on cell cultures, not tumors in people.  However, they seem to all be searching for why tamoxifen might not work in ILC.  Interesting, huh? 

    1.     This article is about how some ILC cells might be resistant to tamoxifen. It's a press release from Georgetown University and shows up in many different publications.

    http://www.eurekalert.org/pub_releases/2009-04/gumc-cat033009.php

    Cholesterol appears to promote tamoxifen resistance in some breast cancer cells say GUMC researchers2.     This article is about how some ILC cells have the "estrogen related receptor" which may explain observed tamoxifen resistance.http://cancerres.aacrjournals.org/cgi/content/abstract/68/21/8908 ERR{gamma} Mediates Tamoxifen Resistance in Novel Models of Invasive Lobular Breast Cancer3.     This article is about ER gamma receptors controlling tamoxifen resistance in ILC cells.http://www.ncbi.nlm.nih.gov/pubmed/18974135 ERRgamma mediates tamoxifen resistance in novel models of invasive lobular breast cancer.
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  • Kleenex
    Kleenex Member Posts: 764
    edited June 2009

    Gitane - Haven't looked at the studies yet, but thank you. Two questions: do they appear to believe that Tamoxifen won't work with ILC? Often, or just the odd case? It's interesting, because ILC is so often hormone-receptor positive, and here I am, premenopausal: it would seem to be just the thing to protect me, wouldn't it? But perhaps not...

    The second question is whether there seems to be any sort of test or indicator as to which ILC characteristics might be problematic...and I'm sure no one has probably figured that out yet...

    I'll check out the studies and try not to work myself into a froth. This will be difficult, as it's toasty in Texas and I'm flashing away madly as it is.

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2009

    Kleenex,  Boy do I hear you about the hot flashes!  I wish I could give you answers to your excellent questions.  I really don't have any idea.

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  • Survivor07
    Survivor07 Member Posts: 71
    edited June 2009

    I noticed that eliminating as much sugar as possible (chocolate, sweets, donuts, ice cream, etc.) from my diet tremendously reduced my hot flashes -- almost down to nothing!!! 

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2009

    I just saw my onco and mentioned the ILC/tamoxifen worry and he is not worried.  Of course it isn't him with the cancer, but he does try to keep up with studies. 

    I have mixed feelings....and for many of us, surgery/chemo alone will have "cured" us, which is why it is so confusing for me.  Is it the tamoxifen that helps so many women, or the surgery/chemo that they had prior to further treatment.  No way to tell right now.

    I'm starting year 3 with tamoxifen as I have osteopenia and AIs are hard on bones.

    The MA-17 study out of canada points to women 5 years on tamoxifen can then go on to ai's for 5 years (because, in theory, most will be menopausal by then) and get 5 years of AIs, which gives them a 10 year coverage.  ILC is more apt to spread (if it will at all) further down the years than IDC, so longer protection seems more important.

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  • Kleenex
    Kleenex Member Posts: 764
    edited June 2009

    The "5 years of Tamoxifen followed by 5 years of Femara" is what my onc seems to have charted out for me - 10 years of fun! But hopefully no cancer fun...

    Survivor07 - I'm sure diet is, indeed, playing into my discomfort. Could you smell the chocolate on my post? We were on vacation for a week (restaurant food!), and have also been busy with kid activities (like band camp concerts followed by ice cream), so I've been eating pretty much whatever, whenever. In addition to the sugar, I think I've also heard that avoiding high-fat things would be a good idea. So perhaps I need to get out of this mindset of, "Hey! It's SUMMER! I'm on VACATION!" My weight is fine, and I'm certainly not snarfing boxes of donuts or anything, but there has been a bit too much of the inappropriate restaurant portions and too little fruits and veggies. And it does seem that if I have a big ol' cheese-enhanced entree, I'm very flash-y later. Even without Tamoxifen, it's not wise to eat big meals in Texas in the summer...

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  • Survivor07
    Survivor07 Member Posts: 71
    edited June 2009

    My doc is putting me on 5+ years of Femara as soon as I'm done with radiation.  She said that Femara is better for patients that had cancer in the nodes--which I did--3 of them.  My Herceptin goes until next February

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  • Rabbit_fan
    Rabbit_fan Member Posts: 166
    edited June 2009

    Hi ILC ladies.  Unfortunately I'm new to your club.  Once I got through the chemo or no chemo hurdle this issue was really weighing on my mind too.  It's one thing to take a drug that's simply not helping, but it seemed like the study mentioning the connection to e-cadherin suggested that the Tamoxifen can actually fuel the cancer.  I'd really be interested in anything that any of you hear from your doctors.  I'm thinking about going to the Mayo Clinic for a second opinion on Tamoxifen vs ovarian shutdown, but I haven't quite decided yet. 

    It's been really helpful to read everyone's input since my diagnosis.  I usually never post on boards like this - I figure I don't have anything new to add -- but then I realized it's more about just supporting each other than having something new to say. 

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2009

    Hi Greta,  

    I'm about to post the world's longest link.  It's not live either, but I think you can paste it into the Google URL thingie at the top and it works.  I just tried it.   Anyway, at the end of 4 years of the BIG 1-98 study, they compared Femara (letrozole) to tamoxifen as an up front therapy in postmenopausal women.  These are the slides from the presentation that gives the results from that subgroup study.  It's fantastic because they break it down by subgroup for PgR expression and Her2neu expression as to each drug's efficacy at 4 years.  More ammo to take to your oncologist if you're still looking for it. 

    G 

    http://media.asco.org/player/default.aspx?LectureID=BR3653&conferenceFolder=VM2007&SessionFolder=Poster&slideonly=yes&TrackID=N929&LectureTitle=Central assessment of ER, PgR and HER2 in BIG 1-98 evaluating letrozole (L) compared to tamoxifen (T) as initial adjuvant endocrine therapy for postmenopausal women with hormone receptor-positive breast cancer.&Key=vm_47_1_335_3653&SpeakerName=; Presenter: Birgitte B Rasmussen, MD, PhD&mediaURL=/media&ServerName=media.asco.org&max=15&ext=jpg&useASX=false&playtype=&playtype=&playtype=,

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  • gretagoodtimes
    gretagoodtimes Member Posts: 3
    edited June 2009

    Gitane, you are a star!.....as our NHS appointments are in 10mins slots i reckon i should email my onc with advance warning!......just found the ILC research piece under the thread "ILC article".Thank you so much.....Greta

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  • Pierat
    Pierat Member Posts: 4
    edited June 2009

    Just been diagnosed and due a mastectomy as soon as. I was diagnosed with MS in 2004 and never suspected I could get this too. What happens now?

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2009

    Gitane, thank you for that link.

    I am not sure if I am missing something; the subdivisions there do show er, pr, and her+ status.  What they don't show is ILC versus IDC.  That is the crux of my worry....

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2009

    wallycat,  I would love to see that, too!  I often wonder if anyone is studying treatment effect on ILC.  We are a very important minority that doesn't seem to rate any special consideration in these subgroup analysis. I worry, too.

    Pierat,  I don't know what to say. When is your surgery?  What have your doctors told you so far? 

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  • Pierat
    Pierat Member Posts: 4
    edited August 2009

    Surgery was on 16th July, Complete matectomy that looks like 2 year old has stitched up it is awful. Not planning a reconstruction because they gave me too much blood thinner and I ended up in intensive care on a ventilator plus I have MS which does not take too kindly to anaesthetics.

    4 out of 14 lymph nodes affected so if wound is healed chemo starts on 27th Aug followed by raditherapy followed by 5 years tamoxifen. I never thought I'd come to this. I am so scared about how I am going to feel. Echo cardiograph tomorrow, and Ct scan then wed chat about chemo the Bome scan Thurs. How do I stop my hair falling out and feeling sick and feeling tired?

    Pierat

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