Recurrent Pleomorphic ILC

nash
nash Member Posts: 2,600
edited June 2015 in ILC (Invasive Lobular Carcinoma)

Hi, all--I was very active on these boards in 2007/08 when I was diagnosed with pleomorphic ILC . Just found out today that I have a local recurrence. Not sure about distant spread b/c still have to have scans, etc. I used to do a lot of research but had stopped after treatment was done in 2008. Now I'm finding that there were studies that came out in 2008 that say Tamoxifen doesn't work for ILC, and even some studies that suggest that it actually encourages ILC to spread and makes it worse. So frankly, I'm sort of pissed off. And the only reason I found out I had a local recurrence was b/c I kept pushing for MRIs after my onc said I didn't need them any more b/c I'd been stable for six years. I'd insisted, we compromised on every two years, and bam. Sorry to be rambling, but I'm just irritated about the whole situation. I don't feel like I can trust the docs b/c they don't pay close attention to the ILC part of my diagnosis, much less the PILC part of it. Just lots of talk about receptor status being the most important thing, blah blah. Anyhow, here I am again. :(

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited April 2015

    Sorry to hear the news Nash. Hopefully it has remained local.

    This is the kind of story that pisses me off too. I feel your frustration with Tamoxifen. A year ago, MmeJ created a very good thread called "ILC - The Odd One Out?". It nailed the issues we face with Lobular research.

    If it helps, I can PM the ILC researchers I've connected with. Some are more helpful than others.

    I saw your post on the MRI vs. Mammogram thread. Any chance you can elaborate on the PILC study at MSK? I wasn't aware, nor can I find it.

    Are you familiar with the TEXT / SOFT studies? They focused on pre-menopausal, HR+ women. The results of both Phase III clinical trials were announced at SABCS Dec 2014. Here's a thread that discusses it: "Changing to AI/OS from Tamoxifen after reviewing SOFT study?" Based on your age at Dx, you're really close to the cohort that would benefit by OS + AI, instead of Tamoxifen. The only caveat is that trial investigators have NOT analyzed the subtype analysis between ductal vs. lobular. Very frustrating. Knowing this subtype data may be the tipping point for a number of ILC women.

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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Yes, if you could PM me the ILC researchers info, that would be great.

    I dug up my MSK paperwork. I had forgotten they just focused on PLCIS, not PILC. The study for which I sent my slides in was published in 2012:

    http://meetinglibrary.asco.org/content/103111-125

    I will read the thread you linked, and also read the TEXT/SOFT study more carefully. I hadn't paid any attention to it in awhile, since onc was so adamant that Tamoxifen was the way to go in my case.

    I'm also not happy about how hard it was to get my path results. My onc is out of the country for two weeks, and whoever they have covering for her is not actually covering for her as far as I can tell. Path came in Friday, I spent all day leaving messages for nurse/on-call dr to call with the results. Was repeatedly assured someone would call before the weekend. At 6pm I finally called again to talk to the answering service who managed to get the on call dr to call me. The on call dr had no clue what was going on, and I had to sit there while he pulled up my file and read the path report. And he isn't even an onc or an md--he is a DO internist. Completely unacceptable.


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  • toomuch
    toomuch Member Posts: 901
    edited April 2015

    Nash - I'm so sorry that you've come back to the boards secondary to a recurrence. Thanks to posters like JohnSmith you'll find the ILC boards much more active now. When I was diagnosed with PILC in 2010, I was so grateful for your posts! I hope that you can find peace during this time while you are waiting for scans and coming up with a treatment plan.

    The study that came out in 2010 showed a slight benefit for AI's over Tamoxifen with ILC but even today most MOs choose Tamoxifen for young, premenapausal women. Sigh. As you know, you will find lots of pertinent, current information posted here. Sending you ((((hugs)))).

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Nash, I remember you very well.

    I am so deeply sorry you are back here with a recurrence.

    I had read that tamoxifen may not be effective for ILC but had not heard it might also fuel cancer.

    Sending you hugs as well and hope you come back to post on your progress.

    Your mention of local recurrence indicates the radiation did nothing or maybe added to the problem...??

    I mentioned this to my DH and his first comment (I have to remember he is trying to calm me) was that if we had stage I and they presumed to get all the cancer with surgery, tamoxifen cannot fuel what is not there. But that is little comfort for me now.

    I hope you have a speedy recovery. ((((((((((((((((nash))))))))))))))))))))))))


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  • Gitane
    Gitane Member Posts: 1,885
    edited April 2015
    Nash, I do remember you, like it was yesterday. You are a fantastic self-advocate. I see the courage, intelligence, and determination I remember shining through in your post. I wish you were not dealing with this again, and believe me those words don't begin to cover what I'm thinking and feeling right now. Once you have a handle on the path, scan reports, etc. please let us know. Warmest hugs, G.
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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Hi, ladies. I'm happy to see familiar "faces" on the boards. :)

    Here's the article I found that suggests Tamox might fuel the cancer. Granted, I'm not a petri dish, but still, it didn't make me feel all warm and fuzzy:

    http://breast-cancer-research.com/content/10/6/r10...

    I don't know if the radiation did nothing, made it worse, or what. I think my main problem is that I have a lot of PLCIS in that breast, and it was inevitable that it was going to morph into more PILC at some point. The hope had been that the Tamox would keep it in check. Clearly it didn't.

    When I was weighing lump/rads vs bilat mast in 2007, my surgeon told me that if the tumor recurred, it would be due to the aggressiveness of the tumor, not how much surgery I did or didn't do. She said if I did the mast, it would come back in the chest wall. So maybe it's good I left tissue for it to grow into.

    I will keep you posted as I get appointments, scans, etc set up. <<hugs>>


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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Nash, I found this: http://www.medicalnewstoday.com/articles/127571.ph... and it seems to point to the alpha turning to gamma (which "they" say can fuel the cancer). There are several articles similar to that one and I can post them if you are interested.

    You are a bright, articulate woman and I look forward to reading anything you post on this subject.

    I sent my onco an email last night (after reading your post) asking what else "we" can be doing and what scans are required/recommended. No reply yet. I'll post if she has anything noteworthy to say.

    It is fascinating that your doctor said leaving breasts would help prevent the chest wall recurrence. I asked the very question to my doctors at the time of deciding lumpectomy vs. mastectomy because my cancer was found close to my chest wall to begin with. I basically asked if "leaving a 'farm' for the cancer to come back to would prevent distant mets." Their reply was no. That where the cancer recurs is not affected. I had second thoughts, but a second doc thought that ILC is sneaky enough that mastectomy is what she would do (she told me this after I made my decision). I think there are as many opinions as there are women. I've also heard mixed opinions on rads, so we unlucky gals are left to fend for ourselves, with limited knowledge on a body of science even scientists seem to know so little about. GRRRRRRR. Thinking about you and hopeful your new journey will be less stressful. Thank you again for coming back to update us.


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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Wallycat, thank you so much for that link--excellent info. I think that's the article I will print off for my onc b/c it's the most comprehensive one I've read so far. And thank you for emailing your onc--I will be interested in her thoughts. And yes, please post or PM me any similar articles you come across.

    My surgeon was just talking about local recurrence as far as the surgery options went. I remember it clearly b/c it became the main part of my decision driver on surgery. I haven't hear the mixed opinions on rads, but I think I would have still been inclined to do it even knowing there was some doubt.

    I'm glad to see that there is more clinical interest in ILC, and partly PILC, than there was in 2007. Maybe I can finally get a member of my medical team to pay more attention to it going forward. Of course, I can barely get them to call with path results, it seems, so maybe I'm reaching a bit, LOL.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Here are a few more studies. I can dig for as many as you want till they are exhausted.


    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC177076...

    http://www.biomedcentral.com/1471-2407/14/826

    I'll dig some more tomorrow if you wish.



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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Thank you so much, wallycat. I think that's good for now--this gives me some very substantive articles to take to my onc.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    OK, if you want anything more, say the word. If you want different parameters, say the word.

    What gets my goat doing the digging is that some of this info was out there in 2001, 2004, 2005...and they still treat ILC like it was equal to the others. UGH.

    keep us posted.

    One question I have and not sure if I will find the information.....does cyp2d6 matter? If you are a slow metabolizer will it impact the alpha/gamma (resistance issues) sooner or later? or intermediate or fast.....

    Here's another study looking at a different receptor: http://esciencenews.com/articles/2008/12/04/novel....

    http://esciencenews.com/articles/2009/06/10/identi...

    http://esciencenews.com/articles/2009/11/25/news.b...

    but I can't find anything on cyp2d6 affecting this.....i'll keep digging. You'd think that if you are not metabolizing the drug well, it affects the cells at a lower and slower rate...but I have no clue if that is a reasonable assumption.



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  • nash
    nash Member Posts: 2,600
    edited April 2015

    You are finding some really good stuff, wallycat. Thank you again. Since I flunked Tamox, I assume onc will take me off of it anyhow, but this all gives me really good stuff to argue with her about if for some reason she wants me to stay on it. The most alarming part is the research that suggests Tamox makes ILC worse. I am sooooo frustrated.

    Got my onc appointment moved up to May 6, which is the first day my onc is back from world's longest vacation. Surgeon can't schedule me for consult until onc's office sends over path, but the ball is rolling on that now.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Nash,

    I am so sorry they are dragging their feet. We are at their mercy and it is frustrating as all get out.

    I found this (there are 25 + pages of abstracts) all related to tamoxifen resistance. Not sure any of the info is useful to you.

    I promise I will stop digging till you ask for more ;-)


    http://www.science.gov/topicpages/t/tamoxifen+resi...

    and

    http://www.science.gov/topicpages/t/tamoxifen+trea...


    I hope these docs step up; maybe you need to remind them they can be fired *gasp*


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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Wow, these are fantastic resources you have, wallycat, thank you! I think that's good for now until I see the onc and see what the plan of action is. I suppose there can't be a plan until I get scanned and we know exactly what we are dealing with.

    Yes, it's frustrating to have so much red tape to hack through. My surgeon is with a different medical group than my onc, and is in high demand, so that slows things up considerably. Plus my onc couldn't have picked a worse time to be gone for two weeks.

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited April 2015

    Can you please direct me to any information that states Tamoxifen fuels cancer for those of us with ILC. I have just been taking tamoxifen for 1 week after being on an AI for 6 months and had to stop because it was affecting my heart and blood pressure too much. I don't want to take Tamoxifen if it's going to make matters worse so please show me where it states this?

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited April 2015

    Hi Nash,

    So sorry to see you back with us again.  I had a local recurrence in 2010 following my initial diag. in 2006.  Tamoxifen did not work for me and Arimidex has been my med since 2011.  I'm battling a different beast at this time but feel your pain for the recurrence.  It certainly rocked my world in a negative way for a long time including chemo and surgery.  The good news for me is that the ILC did not spread beyond the breast and breast skin.  I hope you continue to fight and beat cancer. 

    Take care,

    Nancy

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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Nancy, I looked up your recent posts and I'm so so sorry about your liver. <<<hugs>>>>


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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Fizzdon52, there are different variation of this sort of study that suggest, at least in a lab setting, that Tamox may fuel ILC. Just something to take back to your onc for discussion:

    http://breast-cancer-research.com/content/10/6/r10...

    http://www.medicalnewstoday.com/articles/127571.ph...



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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited April 2015

    Thank you very much nash, I will ask my Oncologists although I have had two of them tell me there is no difference, in the long run, between AI's and Tamoxifen for those of us with Lobular ? And unfortunately some of us just can't tolerate the nasty (and in my case dangerous) side effects of AI's.

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  • nash
    nash Member Posts: 2,600
    edited April 2015

    You're welcome, fizzdon52. As far as I can tell, the oncs have no clue and everything is a crap shoot anyhow. So we all just soldier on. <hugs>

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Nash,

    my onco replied yesterday with this:

    I don't think that tamoxifen "fuels" growth of lobular breast cancer but might not be quite as effective in preventing recurrence as letrozole. This was a small cohort analysis within a larger study, I think comprising a little over 300 women, so not large numbers.


    I replied asking her which study she is looking at and if she thinks the gamma receptor issue is an issue, but still waiting for a reply on that. If she were my onco from the get go, she would have gotten an ear-full. "not quite as effective..." so I wonder what the standard of care for pre/peri women with lobular are these days.


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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Thank you so much, wallycat. I've been giving the whole thing a lot of thought, and since my care team was treating PILC like an aggressive IDC, as they should have, and given how young I was/am, I still think we would have gone down the Tamoxifen route even if I'd know all this info that I do now. Weighing the very premature menopause vs. maybe the Tamox would work because we were dealing with PILC, not just ILC, etc.

    Now I have a new research topic for you if you are up for it. I've started it myself, but could use help, especially since you have such fantastic resources. I know the big conversation with my onc next week will be: do we do more chemo or do we do chemical menopause/AI. All this assuming I don't have mets. I'm pretty sure she is going to suggest more chemo, but want to have some research behind it. Cursory research I have done (CALOR trial) says the chemo carries a large benefit for isolated local recurrence.



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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    I'll be happy to tackle this. I have already begun with the search term "oophorectomy" vs. chemical menopause because it should provide more articles...I think. I can go back and do a second pass for chemical menopause and see if there will be newer items.

    I'll start a new post or edit this one when I start finding things.....


    http://academic.research.microsoft.com/Publication...

    http://onlinelibrary.wiley.com/doi/10.1111/j.1524-...;jsessionid=D62561CD6A806480E6F0DD6EEE163F93.f01t01

    http://www.ncbi.nlm.nih.gov/pubmed/18707822

    http://www.ncbi.nlm.nih.gov/pubmed/11687148

    http://www.texasoncology.com/types-of-cancer/breas...

    http://annonc.oxfordjournals.org/content/23/suppl_...

    http://www.ncbi.nlm.nih.gov/pubmed/25900383

    http://www.ncbi.nlm.nih.gov/pubmed/25459393

    http://www.ncbi.nlm.nih.gov/pubmed/24054015 (basically indicates that local recurrence should be RECHECKED for hormone status...full article is in chinese, but abstract in english).

    https://www.accp.com/docs/bookstore/psap/p6b10samp...


    So far, searching oophorectomy or ovarian suppression...very little is showing up for local recurrence but I will continue to dig.


    More tomorrow! (4/29)

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  • lekker
    lekker Member Posts: 594
    edited April 2015

    Try searching for "ovarian ablation" or "ovarian suppression" rather than chemical menopause. Good luck

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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Thank you!



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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Lekker, thank you for your assistance! If you have some studies, please feel free to post links for Nash.

    I'm seeing very little for ovarian suppression. It also is maddening to type in the "proper' terms and hope for good articles but the search engines have gotten crappy and frustrating...I am getting a lot of "what to do for treatment not to get recurrence" and will need to pick through and fine tune each search as I grapple with how they are including/excluding the articles.

    Nash, let me know when to stop or I will keep going.

    more tomorrow...


    I'm working on a few more searches while playing scrabble with dh..

    this one looks interesting; it is simply an abstract. Your library or library database can get you the full text: http://www.ncbi.nlm.nih.gov/pubmed/25074662

    This one implies redoing SNB:

    http://www.ncbi.nlm.nih.gov/pubmed/22941173

    and re-radiation: http://www.ncbi.nlm.nih.gov/pubmed/21665137


    http://www.ncbi.nlm.nih.gov/pubmed/14659148

    This is an older study and hard to find specifics on types of cancer http://www.ncbi.nlm.nih.gov/pubmed/7931476

    http://www.ncbi.nlm.nih.gov/pubmed/11687148




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  • nash
    nash Member Posts: 2,600
    edited April 2015

    This is good for now, thank you! :) If you have time tomorrow, that's great. My recurrence is getting rechecked for receptor status, and since my surgeon and onc are in different medical groups, I get two path reads.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    OK, I just added a bunch of links.

    I'll dig a little deeper tomorrow.

    adding more:

    http://www.ncbi.nlm.nih.gov/pubmed/19821328

    http://www.ncbi.nlm.nih.gov/pubmed/16360786

    http://www.ncbi.nlm.nih.gov/pubmed/24909504 (new marker to possibly test for chemo response)

    http://www.ncbi.nlm.nih.gov/pubmed/24441684

    http://www.ncbi.nlm.nih.gov/pubmed/23032624

    http://www.ncbi.nlm.nih.gov/pubmed/22918962

    (the one above has full text in upper right corner)

    http://www.ncbi.nlm.nih.gov/pubmed/14522378

    http://www.ncbi.nlm.nih.gov/pubmed/14743564

    http://www.ncbi.nlm.nih.gov/pubmed/8646517

    http://www.ncbi.nlm.nih.gov/pubmed/11516854

    http://www.ncbi.nlm.nih.gov/pubmed/20420942

    http://www.ncbi.nlm.nih.gov/pubmed/12412158

    (the link above doesn't discuss treatment but rather predictive outcomes for new primary vs. actual local rec.)

    http://www.ncbi.nlm.nih.gov/pubmed/21913022

    http://www.ncbi.nlm.nih.gov/pubmed/16983030

    http://www.ncbi.nlm.nih.gov/pubmed/9307188

    http://www.ncbi.nlm.nih.gov/pubmed/17405996

    (above article not specific to recurrence)


    OK...let me know if you want more...there are 100s of pages and I fear none specific to exactly what you want. I could spend hours on this...and worry it will overwhelm your decision making. Hopefully the docs you are working with are current.

    My initial feeling is that there are mixed impressions on ovarian suppression/oopherectomy. Age and hormone status, of course, but also tumor type and what other treatments were used all come into play. One article went so far as to say there aren't enough studies on this. And another article stated that local recurrence may not be taken as dramatically/seriously, therefore, not reported on or studied as much...but that was only one article.

    I was sad to read that ILC is considered a "chronic condition" and needs regular monitoring. sigh. Of course, I think all breast cancer patients feel this way regardless of the dx.

    I know it's been posted here many times that ILC "used to be" believed to develop in the other breast, but newer articles are also leaning this way so who knows what they are basing this on.

    Let me know if you want more of any type of article. I will scour the internet again and if I find anything promising, will come back to post.


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  • nash
    nash Member Posts: 2,600
    edited April 2015

    Thank you again, wallycat. This will keep me busy, and is plenty. I so appreciate your help. I like to go into my appointments with background knowledge, so what you've found will help me immensely. I will report back next week as to what surgeon and onc recommend.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Best to you, Nash and may it all be positive feedback and easy treatment!

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