ILC - The Odd One Out?

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  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Daisy, the main reason I did ooph instead of lupron is that my mother had ovarian cancer. I had absolutely no desire to run around worrying about my ovaries as well. I also had some giant fibroids on my uterus and a family history of uterine cancer (name a cancer, we got it ;) ), so we decided to get rid of that stuff too. It is, however, an extreme approach, I know. For me it has worked out well so far.

  • fizzdon52
    fizzdon52 Member Posts: 568
    edited February 2015

    I have wondered how they know the Zoladex injections are working on my hormones, especially since I give them to myself every 28 days. You can't actually see the pellet going into your stomach so have to trust that it has. So have had blood tests a couple of times just to make sure. I am assured by my Doctors that the readings on a particular hormone they are looking for are low - or not there at all. This tells them that the injections are being effective. But I would have preferred to have my ovaries out and a total hysterectomy personally. I do get hot flushes, but they aren't so bad Sometimes I wish I had been born a man haha!

  • daisylover
    daisylover Member Posts: 310
    edited February 2015

    Thanks fizzdon for your thoughts. There are no simple answers- eh? Sometimes I wish that I had a personal friend who happened to be a brilliant breast oncologist... Then, I would know for sure that they had considered all the factors and come up with the best plan for my situation... I keep asking if there are blood tests that would show if I am in menopause - my oncologist claims not?? They say what is convenient for their plan? It's good that your doctors check your blood regularly. I would find giving myself injections difficult. I guess that I will commit to the plan as proposed and have the ovaries removed... Thanks again! It sounds like your doctors are very attentive. That must be reassuring. You are on an excellent ILC regimen, I believe. Originally, my MO did not push for the ooph but always wanted to switch me to AI (hence Lupron) - needed to complete Palbociclib trial first. Let's hope for an excellent prognosis!

  • texas94
    texas94 Member Posts: 204
    edited February 2015

    Everyone- I want to clarify the reason my drs have no issues with my request to remove my ovaries at age 43 is because I'm in treatment for a Stage IIIc recurrence. I asked about removing them 7 years ago, and the answer was a resounding no. I remember my doctor saying there was simply no rational reason to remove them. In fact, they didn't do anything to shut mine down at all, which seems crazy now, but all my current drs have told me they would have recommended the same exact treatment if I'd been their patient at the time.

  • fizzdon52
    fizzdon52 Member Posts: 568
    edited February 2015

    There are blood tests to see if you are in peri-menopause, or menopause because I have had them quite frequently. They can check several different hormones to see if they are in your blood. So I wouldn't believe them if they say they can't tell if you are in menopause by a blood test - that's ridiculous. From John Smiths post it looks like they are going to announce that those of us with ILC do benefit from Oophorectomy and an AI. So watch this space I guess. It has become increasingly obvious to me that ILC is definitely the poor relative of IDC. Not as much research goes into it. Lets hope this changes soon.

  • karen1956
    karen1956 Member Posts: 6,503
    edited February 2015

    daisylover....I was 49 going on 50 at time of diagnosis. Chemo stopped my periods...Onc did not think they would come back based on my age and being peri-menopausal at Dx. 3 weeks post chemo, I had my first shot of Lupron (3 month shot). 3 months later after recovering from rads I had my oophorectomy..

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited February 2015

    Hello group; Just diagnosed with ILC and after reading a few of these threads, Are we left out? I am 64, have been in menopause I guess since 1996 when I had my hysterectomy.... On Jan 13, 2015 I had double mastectomy to remove the one offending breast and to make sure the other one would not become offending....however after this, it seems that they cannot guarantee that at some time in my life this cancer could come back on the chest wall....guess that blew my theory of ridding myself of cancer. they want me to do chemo, with only a15% improvement record of not getting this cancer back regardless. My margins were clear, my nodes were clear, I am er+pro+ Her2 + so if all goes well, I should be free of cancer for quite a few years, but if it does come back, it will be with a vengence probably, but maybe they will have another cure or treatment that could be good for this type of cancer....then. Not sure what to do? Dont really want to do chemo, cause they cant guarantee me? But guess there is nothing in life that is guaranteed....what to do? Any thoughts or experience with or without chemo? One other thing, I have both my ovaries, with non active cysts on them.....reading this thread, maybe I should have them removed to be safe? Or not?

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited February 2015

    sorry you have to join us Maryann, but welcome. No one can tell us what to do. It's a crisp shoot. You can see my info below. With oncotype at 25 and PR- I was advised the chemo would drop my odds enough to make it worthwhile. Still have ovaries but no period since 2001. Am working on getting my BMI down to leave less fat for estrogen to thrive. If we only had a crystal ball!

  • TaniaE
    TaniaE Member Posts: 92
    edited February 2015

    Just a question for the ladies that have had a oophorectomy, are there any major side effects apart from the usual side effects that come with menopause? I'm currently taking Tamoxifen and the only side effects I've noticed is hot flushes. Are the hot flushes a lot worse once the ovaries are removed or no different. I'm just worried that my oncologist is doing the usual "one size fits all" routine by keeping me on Tamoxifen as it's the standard of care for patients that were pre-menopausal at diagnosis here in Australia. I would be keen to bring up the idea of an oophorectomy when I next see him. The thought of the Tamoxifen not having any benefit worries me. So sorry about your diagnosis Maryann.

  • karen1956
    karen1956 Member Posts: 6,503
    edited February 2015

    MaryAnn927 - welcome to bco....glad you found us, but sorry you needed to....Since you are having questions about chemo, I would suggest you consult with another oncologist. I too had a bilat - followed by chemo, rads, AI's and oophorectomy. Chemo is hard but it is doable. I was ER/PR+ and had node involvement...the oncotype test was not offered to me....I was a "good" girl and followed the recommendations of my oncologist....It seemed like the right thing to do...I was stage 3 and wanted to beat this beast!!! Even with doing all these treatments, I know that I can go from being NED to mets..I just live each day knowing that I did all I could to beat the beast. For me, the most important thing is knowing that you have done everything in your power whatever that means for you...If you feel good about your treatment, that is what matters....

    TaniaE...I had my ooph following bilat, chemo, rads....I had a Lupron shot 3 months before the ooph so I could start AI's...chemo stopped my periods so I hadn't had one for 7 months....my onc did not think it would come back. I didn't suffer too much from hot flashes, though my core body temp got warmer...so I was often hot....but I had wicked night sweats....While I was on AI's I started on gabapentin for joint pain and it helped with the night sweats....Another side effect is lack of libido. Being slammed into menopause is harder than when you go through it naturally. I was peri-menopausal at time of diagnosis and I struggled after my ooph...but it was 3 months after finishing chemo, 6 weeks after rads so hard to tell what was what.... Tamox is a good drug...a good medicine....AI's don't work on pre-menopausal women. After menopause you can take tamox or AI's. When I was struggling with side effects on AI's my onc put me on tamox, but I also had side effects on it (GI rather than joint pain)....Tamox has been around for years....Talk to your gyn about the ooph...he/she might have some insights for you...All the best...

  • daisylover
    daisylover Member Posts: 310
    edited February 2015

    Fizzdon, thanks - I will probably just go ahead with the ooph at this point. My oncologist probably just wants to push me in that direction. She must be thinking that the test is not 100% (is anything?) definitive? It seems worth the risk for me.

    Karen - thank you for sharing. It seems worthwhile for me to do the ooph as well. They wanted to be very sure that your Estrogen production was shut down...

    Maryann, you are still in recovery! Wish you a speedy return to life's routines. I think that your being HER2+ makes you even more unique and opens up a different set of options for treatment. I have not read about HER2+ and ovarian risks. (You seem to be safely in menopause.) Are you communicating on an HER2+ thread? Maybe someone there will have researched?

    Chloesmom - I too am working on BMI :) you are right - "no one can tell us what to do"

    Tania, I have been told that the "hot flushes" will be the same for me after ooph as on Lupron - maybe briefly increased and then reverting to current level. They answered "should be"... not sure how it will be if you are just on Tamoxifen. Hopefully someone with experience will answer. It's really tricky weighing all these factors... I think that Tamoxifen has a very good record (unless you don't metabolize?) - current research may just be showing that AI's are slightly more effective for Lobular. I would try not to worry! (I understand thoough - I worry a lot...)

    Thanks everyone for the discussion.

  • JohnSmith
    JohnSmith Member Posts: 651
    edited February 2015

    I speak for my wife, who debates the exact question (oophorectomy) posed by TaniaE.

    Based on this forum, it seems many pre-menopausal women who are worried about side effects of an oophorectomy, suppress the ovaries with monthly Zofran injections first. Once the ovaries are chemically shutdown, they take an AI. If the side effects are tolerable, than an oophorectomy seems more plausible. There's no turning back if you do the oophorectomy first, only to find the side effects are miserable.

    Despite this, my wife is awaiting the results of the Lobular data from the SOFT / TEXT trials (phase III, randomized trial that enrolled ~3,000 HR positive, early stage, pre-menopausal women). If lobular represents the normal 10% of breast cancer cases, simple math says that ~300 women in these trials were Lobular. So, the big question is: How did the Lobular participants do in the SOFT / TEXT trials?

    The lead researcher for SOFT/TEXT is based at the Peter McCallum Cancer Centre in Melbourne, Australia. I won't throw her under the bus by revealing her name, but a quick google search will tell you who she is. As mentioned earlier, raw data exists for this ILC subset that participated in SOFT / TEXT trials, but they haven't analyzed the data, and she told me nothing will happen until after central review of pathology samples has been completed. A bit frustrating...
    Knowing this info might alter treatment decisions (oophorectomy) for people like TaniaE, my wife and others who are still pre-menapausal / early stage and are trying to do the most to prevent recurrence. I mention this again because we need more of you who fall into this category to put pressure on her to reveal this potentially game changing data. It may turn out that the data has no clinical relevance, but a sense of urgency is needed to find out, especially when Lobular is under-studied compared to other subtypes.
    If you're early stage ILC, ER+ and pre-menapausal, feel free to PM me and I'll tell you more.

    Sorry to beat a dead horse here, especially for those who find this topic irrelevant. I'm just doing what I can to help my wife.

  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Tania, the combo of ooph + AI is, as someone already said, like being slammed into menopause. It is not easy. I was quite shocked at first by the effects, especially to sexual function. My libido was always fine and remains so, but the equipment was not cooperating. Let's just say that I developed a whole new sympathy for men with impotence.

    However, I am glad to report that these problems are partly temporary. After being on the "instant super-double-plus menopause rollercoaster" for about 6 months, things started looking up. I am 3 years out at this point and still on femara (probably for the rest of my life or 10 years, whichever comes first) and I really don't have any major issues. Minor ones for sure, but nothing that interferes with living a good life.

  • bc101
    bc101 Member Posts: 1,108
    edited February 2015

    I just received a notice about a podcast some of you might be interested in:

    http://www.lbbc.org/Event-Archive/2015-01-13-SOFT-Trial/%28language%29/eng-US?auid=15145316

  • TaniaE
    TaniaE Member Posts: 92
    edited February 2015
    Thank you so much for sharing that podcast bc101, very informative. And Momine, John Smith, Daisylover and Karen thanks for your information also. John Smith I go to one of the top breast cancer oncologists in Sydney Australia. Next time I visit him I will ask him if he knows any information about the SOFT/TEXT study in Melbourne. I know that he does travel to Melbourne quite often.
  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited February 2015

    Maryann, being HER2 + is a whole different ball game when it comes to recurrence. You should have been offered Herceptin and/or Perjeta. Herceptin is a game changer for HER2+ girls, and chemo is pretty much a given as well. I think with treatment of chemo and Herceptin and/or Perjeta recurrence rates will drop a lot more than 15%.

    Have a look at the Triple Positive Thread, they are very active.

    ILC and HER2 + is not common, so you need to know what you are dealing with.
    Trish


     

  • Mm68
    Mm68 Member Posts: 64
    edited February 2015

    JohnSmith-I found the study you referenced and it indicated the participants also had chemotherapy and high risk for reoccurance. My onco score was 12 and chemo would have only reduced my risk by 1%. I wonder if this makes a difference? I start radiation Tues., 30 treatments then meet with MO March 27-I will discuss with him

  • RobinLK
    RobinLK Member Posts: 840
    edited February 2015

    Maryann,

    Trisha is correct about the triple positive ILC being uncommon. The ladies on the triple positive thread are a wealth of information.

    I am curious about the AI vs. Tamoxifen outcomes. My MO still feels that Tamoxifen is the best course for me. I am advanced stage not early, wondering if that is the difference.

  • robinblessed54
    robinblessed54 Member Posts: 578
    edited February 2015

    Hi Robin I am Robin also. I was the one that was on 2 AIs switched to Tamoxifen and now my new MO wants me off Tamoxifen due to stroke history in my family. I am 60 and postmenopausal. I had a slow growing ILC/also mixed with IDC. She feels that Femara is a better drug for this. She also said that I shouldn't have been given AI in colder months. It peaks from 3-6 months and cold weather exacerbates the muscle/joint SE. She wants me to start in April so I would peak by September. I am willing to try the last AI.

  • RobinLK
    RobinLK Member Posts: 840
    edited February 2015

    Hi Robin,

    I am pre-menopausal with osteoporosis at age 50. My cancer was very aggressive. I had clean mammo 10 months prior to DX. MO says cancer was not there at mammo, it just grew that fast. I think that is the reason he wants me to stick with Tamoxifen. I really need to remember to ask....

  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Robin, the most likely reason for tamox in your case is the osteoporosis. The tamox could help it a bit, whereas the AIs will almost certainly make it worse.

  • robinblessed54
    robinblessed54 Member Posts: 578
    edited February 2015

    Good news, bone scan results T-0.0!! In the middle and good. So Tamoxifin is out. She believed the best med is Femara. We will see.

  • Mm68
    Mm68 Member Posts: 64
    edited February 2015

    I am confused as to why Tamoxifen vs Femara. Some articles I have read say Femera is prescribed for more aggressive cancer. I have been told I will be taking Tamoxifen, my cancer is stag 1 and no other medical issues. Guess I have to ask more questions

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited February 2015

    if you aren't post menopause they don't give the AIs

  • fizzdon52
    fizzdon52 Member Posts: 568
    edited February 2015

    Actually they can give you AI's if they stop your Ovaries working, putting you into menopause. They have done this with me. I am getting monthly Zoladex injections and taking Femara.

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited February 2015

    Correct. After surgical menopause too.

  • Mm68
    Mm68 Member Posts: 64
    edited February 2015

    Thank-you for clarification, I am pre-menopausal. I am planning on talking to MO about the pros and cons of doing the surgical menopause and if Femara would be a better option

  • texas94
    texas94 Member Posts: 204
    edited February 2015

    fizzdon52- I'm so surprised your MO is giving you Zoladex and Femara. At MDA it's one way or the other: shots to stop ovaries & Tamoxifen OR ovary removal & Femara (or another AI). They won't give AIs to pre-menopausal women who still have their ovaries, even with the shots. I've wondered why since I found out about this, but I keep forgetting to ask (My ILC is recurrent and hereditary, so my ovaries are coming out anyway, hence not remembering to ask). On top of that, it's tough to find someone here who will remove ovaries in a pre-menopausal woman without a genetic mutation and/or recurrence (I have many ER+ PR+ survivor friends who want their ovaries out but can't convince any of their doctors).

  • daisylover
    daisylover Member Posts: 310
    edited February 2015

    Texas, I am pre-menopausal, or was when I started Lupron. At Dana Farber, my oncologist has recommended having my ovaries out and switching from Tamoxifen to an AI. If I prefer, I could remain on MONTHLY (not the every 3 months) Lupron for 5 years. (She confirmed this plan after the Breast Cancer oncologists met to discuss the results of the SOFT trial.) I will have my ovaries removed - Lupron has uncomfortable side effects for me. It's interesting how different cancer centers /oncologists have different protocols.

  • gemini4
    gemini4 Member Posts: 532
    edited February 2015

    yes, I am often surprised at how the protocols differ by cancer centers and regions. For example, I have never had bloodwork done (tumor markers) as part of my post-treatment follow up. My oncology team is at Mt Auburn in Cambridge, a Harvard teaching hospital. Not sure if it has to do with my early staging, but all three onc's said it's not part of the protocol any more. Yet I have read here that many onc's do this type of bloodwork. Daisylover, do you have this done at Dana Farber?

    I'm still apparently premenopausal ... I thought I was on the other side with no periods for 15 months. But last month I got a full-fledged period! My GYN ordered a pelvic ultrasound (I also had one in the fall just as a benchmark to see what the tamoxifen was doing). The ultrasound showed no polyps or fibroids, and thickening is the same as before -- I had an endo biopsy in the fall as well, and all was normal. As a matter of course, though, the GYN said we should go in again. She offered me the option of endo biopsy again or a D&C .... I think I'm going to opt for the latter. She said neither is a right or wrong option. I figure the more aggressive approach will be more definitive. Any thoughts on this?

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