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ILC & No Chemo?

124

Comments

  • fizzdon52
    fizzdon52 Member Posts: 382
    edited March 2016

    I didn't have chemo. I was told here in New Zealand with ILC you only get chemo if there are nodes involved which there wasn't with me. They reckon the risks far outweigh the benefits. I must say it does worry me though?

  • hbbae
    hbbae Member Posts: 9
    edited March 2016

    MamaM, I was diagnosed with ILC in 2008; had a lumpectomy; no nodal involvement; my tumor was just a bit bigger than 2 cm (somewhere between 2 and 2.1), and MO was on the fence about recommending chemo. Had the Oncotype test, scored 15 (low risk), so we decided to forego chemo. [I have no regrets about that decision.] Had the standard course of radiation plus a "booster" for the final week. 5 years of tamoxifen (easy), 2.5 years so far of anastrozole (not easy; my woes are described on a different thread). After much deliberation and discussion with docs, I'll be switching back to tamoxifen in April, for the final 2.5 years of hormonal treatment. (Bone loss/teeth issues contributed to the switch.)

    are you doing ok on the arimidex?

  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited March 2016

    grandma 3X,

    Thank you for your thoughtful reply. After reading it and that of Ms. Pharoah, I realize there's a lot I still need to research and learn before my MO appointment on Monday. I only know what she told me on the phone and wonder now if I heard her correctly. I know the 20 Oncotype DX score is correct but I wonder if the 13%-7% distant recurrence reduction from chemo is right - doesn't look like that much from the graph. I need to question MO as to exactly what my benefit percent would be.

    BTW - I'm 62 years old and, of course, post-menopausal.

    I also have no idea what chemo I would be on if I decide on chemo treatments. I can hope it would be one of the new generation chemos with lesser SE's but I'll learn more on Monday. I have read that ILC is slow growing so doesn't respond as well to chemo as other forms of BC such as IDC. Is this a factor in the chemo/no chemo decision? My tumor was 1.1 cm, strongly ER positive (initial biopsy said 100% ER +, strongly staining) but my PR was only 5% moderately staining. Also HER2 negative (+1). I presume the strong ER+ nature would translate into good anti-hormone therapy but that's one of the clarifications I want from my MO.

    Another question I have is that the Oncotype DX report shows distant recurrent risk in two ways:
    1. It presumes use of Tamoxofen and gives recurrence risk with Tamoxofen alone
    2. It also gives recurrence risk using Tamoxofen AND chemo.
    What if I'm post menopausal and would use aromatase inhibitor instead of Tamoxofen? Does that change the recurrence risk?

    And another thing - I didn't get a Ki67 score - neither with initial biopsy nor with final post-surgery path report. So I have no idea how that factors into all this

    Clearly I'm already postulating my questions for Monday's MO appointment! Thank you for reading and if you can shed any light on my questions, I'd love to hear Smile

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2016

    Well, Sunnyone, Oncotype DX was tested with tamoxifen, but since aromatase inhibitors are considered slightly more effective than tamoxifen in terms of disease-free survival, I would guess that it would be comparable. Ask the onc. It may be a matter of choosing your side effects. Unless the onc believes an aromatase inhibitor is better for ILC. There is some data suggesting this (2nd link below). I wish I had known my Ki67 the first time around, but apparently it wasn't done. There is a whole thread about this (first link).

    https://community.breastcancer.org/forum/147/topic...

    http://www.breastcancer.org/research-news/20121217...


  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited March 2016

    Hi Shetland,

    Thanks for your reply. I had an old friend staying with me for the last few days and haven't had a chance to relax until I put her on a plane a few hours ago!

    I appreciate the links you included in your message - I studied them both. I've also researched the OncotypeDX website and have a better idea of what's included (and what's not) in the score. I learned that the OncotypeDX company also posts a calculator on the website which oncologists can use to add in additional factors to the chemo/no-chemo decision process. Factors such as age, tumor size, tumor grade, etc. Using an algorithm, those numbers AND Oncotype score help predict the overall effectiveness of chemo - and thus, help the oncologist provide guidance on this important decision.

    Unfortunately, tumor type (IDC, ILC, etc) aren't taken into account in any of this (that I can see.) Frankly, maybe it doesn't make a statistically significant difference overall. Still, with what I've read about ILC being slow growing and not as responsive to chemo, I'm sure going to want to include it in the decision.

    Like you, I wish I knew Ki67 score but frankly, I've read quite a bit about about the ambiguity of that score and how it varies based on sample, observer, etc. It seems some Oncos don't use it for those reasons. Of course, I intend to ask my Onco on Monday.

    Again, thanks for your reply and links. VERY helpful.

    Sunnyone

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2016

    You're welcome. Please let us know how it goes next week (if you feel you want to).

  • Lily55
    Lily55 Member Posts: 1,748
    edited March 2016

    Sunnyone - in your shoes I would definitely not have chemo, don´t know if that helps you, but wanted you to know you have support on the no chemo side!  I refused chemo and do not regret it

  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited March 2016

    Thanks Lily! Support on this site is incredibly comforting for me and I'm sure, for everyone else.

    Today I'm gathering data and listing questions I'll ask my MO on Monday. Lots to take into account. Always encouraging to see posters like you who share their experiences, especially when those experiences are positive, even a few years later!!



  • 1Uniboob1
    1Uniboob1 Member Posts: 23
    edited March 2016

    How did it go sunnyone?

    I am new to all of this and understandably overwhelmed & confused. I am scheduled to start chemo March 30 but I went for a 2nd opinion and that onc thinks hormone therapy and radiation may be a better route for me. I had a PET scan today. Once my 2nd onc reviews that he'll confirm this. Why is there such a variance on treatments? Is it because it's ILC and they lump it together with other BCs? I'm terrified of chemo but I don't really understand hormone therapy either. Argh. I guess all of this will be answered next week at my various appointments but who to trust and follow? 

  • moderators
    moderators Posts: 8,739
    edited March 2016

    Hi 1Uniboob1, welcome to BC.org. We're so sorry you find yourself in this situation, but this is a great place to come for information and great support.

    Others should be along soon to offer some advice and personal experiences to you. If it helps, in the meantime, you can take a look at the following articles from our main site:

    Treatment for ILC

    What Is Hormonal Therapy?

    Please let us know how your appointments go next week. Best wishes!
    The Mods
  • Lily55
    Lily55 Member Posts: 1,748
    edited March 2016

    Hi Uniboob, hormone therapy is often the most successful therapy against ILC as ILC is a very hormone dependent type of cáncer.........but there are rare versions that are not hormone driven.  ILC is a specific type of cáncer and often is lumped in with ductal cáncer for treatment protocols but there is finally more interest in researching ILC as its own cáncer in the medical community.  John Smith on this fórum is a great source of info, some of it very technical. 

    The jury is still out but there are many oncologists who beieve that chemo is not as effective on ILC, partly because it tends to be slower growing than other breast cancers.

    Hope this potted versión helps a bit.....

  • 1Uniboob1
    1Uniboob1 Member Posts: 23
    edited March 2016

    thanks for your reply Lily. I did look into John Smith and technical is right! But It looks like I have to do chemo regardless. My PEt scan came back clean. Too clean. So there is nothing to indicate wether hormone treatment is working. Nothing to measure. The oncologist said if I started treatment before my mastectomy then we could have seen how the tumour responded to the treatment. I wish i saw him prior to surgery. Hindsight though right?

    So chemo it is. Starting on the 30th.

  • Lily55
    Lily55 Member Posts: 1,748
    edited March 2016

    What do you mean your scan came back "too clean"?  No one ever has any proof that any treatment is working when it is meant to be keeping cáncer at bay.............

    Given your statistics I would definitely not do chemo........I don´t understand why you say you "have" to do chemo?  But I don´t want to influence you, its a very personal decision

  • stellamaris
    stellamaris Member Posts: 313
    edited March 2016

    hi everyone. My oncotype was 27, and my MO was against chemo for me. He said that the 3% benefit in distant recurrence did not outweigh the side effects. I'm not sure if the fact that I also have RA was a factor in his decision. He also noted that the AI is a bigger gun than tamoxifen. My bigger worry with ILC is local recurrence, and/or contralateral occurrence, since ILC tends to hide and is not easily seen on the dx tools. Sending everyone best regards and peace of mind

    Just guessing, but I suspect Uniboob is getting chemo cause her noded are positive.

  • fizzdon52
    fizzdon52 Member Posts: 382
    edited March 2016

    Yes that's what I think to Stellamaris. I didn't have chemo either, not worth it if no nodes involved I was told.

  • Lily55
    Lily55 Member Posts: 1,748
    edited March 2016

    i had positive nodes and still refused chemo, anti hormonals do the most powerful work against ILC

  • grandma3X
    grandma3X Member Posts: 297
    edited March 2016
    Stellamaris - I hope you are doing well after your surgery! If I remember from your other posts, you are weakly ER positive. That may have skewed your Oncotype into the intermediate range (although they measure estrogen status differently from the pathology report). I wonder if the other genes they measured such as Her2 and other proliferation genes were on the low side as well, to keep your score from drifting into the high range? That may have factored into your MOs decision. I wish they would report all of gene expression values! I was disappointed that I only got ER, PR, and Her2 results with mine.
  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited March 2016

    I realize my last post here was March 4 and I've had several onco appointments since then. In short, both my original oncologist and second opinion onco recommended against chemo. Even though OncoDX score was intermediate, the absolute benefit of chemo was negligible. And using the website Oncotype DX tool that adds in tumor size, patient age, etc. the risk of recurrence % was even smaller than that identified on OncotypeDX report. I believe the website tool draws on the database of Oncotype DX users and is therefore not clinically verified. It is a way, however, to narrow down percentages using patient-specific data - it helped me cement my decision not to do chemo.

    Interestingly, neither of my MO's knew of this website tool. I pointed it out to both of them! (It is a tool on the Genomics Health website that can only be accessed by practitioners, not patients.) Unfortunately, it does not take ILC vs IDC into account. Still - it's useful.

    I just finished #8 of 28 whole-breast radiation treatments. I will start on AI in a week and knowing it's impact on lowering the rate of distant recurrence for hormone-dependent ILC, I'll use it even with it's undesirable side effects. It's the devil we know against the devil we don't...........................

    Once all the science is in, the chemo/no-chemo decision is a highly personalized one and each one of us will make a decision we can live with.

  • grandma3X
    grandma3X Member Posts: 297
    edited March 2016
    Sunny one - I started Letrozole (Femara) 2 weeks ago and so far, so good. I read a paper which showed an inverse correlation between Vit D levels and joint pain - participants with higher Vit D levels were less likely to suffer. This is an easy blood test. My levels were slightly low so I'm taking Vit D3 supplements to bring it up. Also check out the bone health thread - some good info about calcium- Vit D - Vit K2 interactions. Of course check with your MO before taking anything to be sure it also doesn't have an effect on your treatment.
  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited March 2016

    Thanks grandma3X - great advice!

    I'm not taking Vit D right now (or any other supplements) until I finish rad treatments (did #9 today of 28). But I live in southern California and have the sun as my Vit D supplier for now.

    My MO said she would test Vit D level AND bone density when I start AI. (My appt with her is next week). So I'll be sure to keep that Vit D level up there and hopefully minimize SE's.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2016

    Sunnyone, I believe that even though the radiation oncologists recommend against most supplements during rads, they do approve of vitamin D. It is not an anti-oxidant. Have you asked?

    My onc said that many of us can't get enough vitamin D from the sun, and that has been the case with me.

    I didn't like it that the doctors at my first place were going to wait until I got through surgery and rads before even testing my vitamin D levels. Low D appears to be a breast cancer risk factor, particularly for premenopausal women, so I thought, why wait? I requested a test, and it was low.

    Grandma3X, I read that high D levels may not be desirable for those taking aromatase inhibitors, as high levels could be associated with higher estradiol levels in these patients. I'm thinking adequate but not too high may be best? I need to ask my doctor what she thinks. See this link:

    http://foodforbreastcancer.com/news/vitamin-d-supp...

    A summary and links to studies about research concerning vitamin D and breast cancer can be found at the link below. As always, ask your doctor what the current thinking is and what applies to you.

    http://foodforbreastcancer.com/articles/how-import...


  • grandma3X
    grandma3X Member Posts: 297
    edited March 2016

    Thank you ShetlandPony! I'll ask my PCP to test my estrogen levels as well next time I see her. I was kind of surprised by the relatively high levels they measured in the abstract of the link you posted. The Femara website says that estrogen levels are reduced 75-95% within a few days after starting treatment.

    Edited to post this link which shows much greater suppression of estradiol and estrone sulphate than reported in the Vit D study:

    http://jco.ascopubs.org/content/26/10/1671.full.pd...


  • robinblessed54
    robinblessed54 Member Posts: 485
    edited March 2016

    I didn't have chemo or rads. I found my lump 1.2 cm no nodes involved. I had bmx and immediate te recon. I have had my implants a year. I am on letrozole as well. Tried Arimidex and Aromison but had horrible se. Arthritis do bad that I felt 90 years old! Letrozole is so much better. I just had trigger finger release surgery 10 days ago which they attribute to the Arimidex and Aromison.

    Cancer, the gift that keeps on giving!

    I was so glad I didnt have to have chemo. I felt that it would have done so much collateral damage.

    Ro

  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited March 2016

    Thank you ShetlandPony and grandma3X for the informative links about Vit D. I see both my rad MO and regular MO this week so I'll get the straight dope on what my Vit D level is and SHOULD be going forward.

  • bc101
    bc101 Member Posts: 923
    edited April 2016

    I didn't have chemo or rads based on a low Oncotype Score. It's been awhile since I've thought about it, but I think it was a 7. I also had a very low ki-67 (0.5%). The worst thing was a positive sentinel node, although it was considered a micromet. I had neoadjuvant hormonal therapy and 2 unsuccessful lumpectomies before my BMX and ALND. I feel fortunate to have escaped chemo and rads, but am feeling very estrogen-deprived. Not sure if the fatigue, brain fog, vulvodynia and joint pain are from the Aromasin. It's been almost 3 years now since I started AI's. Could be other factors...my docs are testing me for Autoimmune disorder and Fibromyalgia. Other than depression, PTSD and extreme paranoia about having a recurrence, I think I'm doing pretty good! Oh, and my docs don't ever do blood tests or any other scans - unless I come up with symptoms, which I have been known to do. Wish there was a better way to track us, but it is what it is.

    Best of luck to everyone!

  • robinblessed54
    robinblessed54 Member Posts: 485
    edited April 2016

    bc101, yes, it is probably the Aromison that is doing that!! I was on Arimidex and Aromison before I finally got a new MO and went on Femara. 360 turn around! I felt like I was 90 years old when getting out of a chair or the car etc. it left me with arthritis and trigger finger which I just had operated on. Yes, they are the same family of drugs, AI's, but Femara is just different enough to make it tolerable. I don't have any se like I did other than dry everything. Better than not being able to move. Now at almost 62, I feel great! I always have blood tests before my MO appointment. It is important to make sure the AI isn't damaging your liver.

    Take care

    Robin


  • bc101
    bc101 Member Posts: 923
    edited April 2016

    Robin,

    Thanks for the tip. I'm glad it's working for you. I've also tried Arimidex and compared to that, Aromasin was 100 times better. But now, it seems like it's gotten worse the last 3 months or so. I'll keep it in mind. My MO doesn't do bloodwork - only for calcium levels because I'm taking Zometa every 6 months. I'll ask about it, though. I sometimes wonder if we should be monitored better as far as how these drugs are working. I've never had my estrogen levels checked or anything like that. Oh well....there's never an easy answer no matter what you do!



  • 614
    614 Member Posts: 398
    edited April 2016

    I am glad that I am taking Arimidex/Anastrazole because it helps me to worry less.  I have minor side effects so I am very lucky.  That being said, I am constantly doing breast self exams and I "feel" lumps everywhere.  I know that I have extremely lumpy, heterogeneously dense breasts though.  I have an appointment with my MO in a week and 1/2.  I cannot wait. I won't be having my next mammo/sono until the end of May unless my MO feels a suspicious area when she does my breast exam.  Everything, to me, feels suspicious. 

    Good luck to everyone here.

  • fgt4lfe
    fgt4lfe Member Posts: 2
    edited April 2016

    "I don't know what the future holds, but I know who holds the future" (AWB I love this)


    I was dx with ILC and will see my surgeon tomorrow, By reading all the posts, I know I will be asking a lot pf questions from blood work to treatment. You are all in my prayers.

    Thank you for being here.


  • fgt4lfe
    fgt4lfe Member Posts: 2
    edited April 2016

    to 614 I wish you the very best. Prayers

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