ILC & No Chemo?
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Hi England59, I'm from New Zealand and I was 53 at diagnoses. I feel like an old lady now too, sometimes I even have trouble walking my ankles hurt so much
Just wondered how you are finding Letrozole?0 -
The decision as to whether or not have chemo is tough as I'm borderline, until I met with a support group of cancer survivors last Thursday. They mentioned all the side effects of chemo, such as neuropathy and brain fog, along with severe weakness. I have chronic pain and neuropathy from previous orthopedic surgeries, and still need a hip replaced. I found a few women who had ILC and asked they'd do chemo again and both said no.
So maintaining quality-of-life is most important to me, not length. But the decision is related to my age and overall health. If I was a younger mother it would be very different. And I'm waiting for better info on how to treat this cancer, not all breast cancers lumped together
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I'm relieved to read your post Leslie as I haven't had chemo and still feel some concern about this. My MO didn't recommend it for me. I'm putting my faith in letrozole and having a prophylactic mastectomy early next year. The choices we have to make are so difficult, and all have short-term and long-term consequences.
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Morning ladies,
No chemo here .. and no regrets (although the ultimate choice was mine as per my oncologist). My tumor was 3.5 cm - grade 2, stage 2 - but zero lymph node involvement. It's a choice I made and my oncologist agreed with it (he was actually going to advise me against it had I chose it LOL).
We have to make some decisions that are not always easy - but in the end, I know mine was right. If I am unfortunate to have my cancer come back, I will deal with it. For now, life goes on .. and I am enjoying mine to the best of my capabilities
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The Letrozole took me from a KI-67 of 44% to 3% within 6 weeks. I'm going to put my faith in it for now. And even if ILC metastasizes, I still expect it to be lazy and hang out before becoming a problem. I carried it for years in my breast after all. I'm not throwing caution to the wind either; today I'm having body and bone scans to ensure there's no detectable rumors.
To be honest, I'm more pessimistic about the World's odds than my own. Between the weather changes and our ongoing war against radical Muslims, not to mentions the former's impact on food supply. I question how long we'll have a good life, and should treat every day as precious. Have you seen food prices lately? They've risen more in the last year than the last 10. How long can we sustain ourselves without better solutions to our world problems?
I don't mean to be paranoid - quite the opposite. If someone really needs chemo and feels strongly, by all means they should. Younger women with more advanced disease may need it. Also, we should see better cures for ILC someday.
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I had a bilateral mastectomy (2 tumors in one breast, LCIS in the other). The snd detected isolated tumor cells in one node, and micromestasis in another, and the 3rd was clear. Both my surgeon and oncologist said I didn't need to have chemo (although I worry about the ITC). I had a mammaprint test done that said my chance of recurrence was less than 10%.
I took Tamoxifen for 18 months, and now I am on Letrozole.
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My oncotype score was low so my doctors did not feel that I needed chemo.
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I had neoadjuvant chemo, mastectomy, 33 radiation sessions and am now taking Arimidex (I'm 66). I did not have the onco test and my MO does not run tumor marker tests. I do have my blood drawn on each visit. I really didn't even think I had a choice about chemo. It was the only option presented to me. Both the BS and the MO (and the hospital tumor board) agreed this was the best treatment plan for me. They said it was due to the size of the tumor and the fact that it had already moved into my node. It was a shock to me because my mammogram the year before clean. The chemo shrunk the tumors in both the breast and the node but not a complete response.
It is amazing to me that so many of you did not need chemo. I'm not sure what I would have done given the option to not have it. I do know that I'm glad I did it. The pathology report said that I was ER/pr positive but the ER was only 25% and the pr 50%. I'm not sure if doing just the AIs would have as good of a result as it would in someone highly positive. Also, I'm hoping if any of those nasty cells were floating around in my blood the chemo zapped them. It was difficult but I got through it. I finished my rads late in May and am just starting to feel a little more normal.
I'm learning so much from these discussions, especially about ILC. Wish I had read all this last year before my treatments. Thanks to all of you for sharing your knowledge
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On Friday I had my 3 year MRI and mammogram. Hoping for NED again, 3 years out of dx. I take Tamoxifen.
I had a lumpectomy, 16 rads. MO considered an AI, but I have osteopenia.
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Chemo treatment in ILC remains controversial. However, chemo should be considered in pleomorphic, solid or histiocytoid variant, HER-2 overexpression, Grade 3, or ER-negative tumours, but not necessary in the most common classic subtype of ILC, which is frequently chemoresistant, like many Luminal A-like tumours. Even if classic variant of ILC shows Luminal B-like features, chemo shouldn't be used indiscriminately.
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KayaRose,
Your ILC stats look a little different than most of ours. Your tumors don't appear highly responsive to estrogen at 25% positive, which is low for ILC. Mine's 95%. My MO also took my Oncotype which was 15 and several other tests into consideration before deciding against standard chemo. But there's a lot of research as mentioned by Gohan1983 above that shows ILC doesn't respond well to standard chemo. But that's more common ILC. Yours may not be typical.
My surgeon put it very well when he removed my unused chemo port 2 days ago. He said Oncologists have a very difficult time accepting that there is no good answer and they want to do "something." But there's more they don't know about ILC than do, and until better treatments are found endocrine therapy is our best bet.
And I'm a believer that my own immune system gives me the most protection and don't want to compromise it. I am looking at a clinical trial that uses vaccines to try to stimulate the body's immune system to fight the cancer. That's the future. If you're stage 1 with a small tumor, unless testing says otherwise, chemo may not be your best choice for ILC. I believe one of the facts they're finding out about Cancer in general is that it's over treated, and the "cure" may sometimes bring on more disease
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Leslie13, I understand what you're saying about chemo and that endocrine therapy may be the way to go for most ILC cancers. However, what do you do when your tumor is only 25% estrogen receptive? It's pretty frightening to me to think I had only Arimidex to combat my stage IIIa cancer - especially when it had already spread to the node. I don't consider the chemo I went through to be just "something." I consider it another tool to fight the beast. I totally agree with you that imunotherapy is the future of cancer treatment and would be interested in hearing more about the clinical trial you're looking at.
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i too would love info on clinical trials
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KayaRose,
It looks like you've been through treatment with typical chemo and radiation. Staying on an Estrogen drug like Arimidex is standard whether you're ILC or not.
We're talking about whether to do chemo on high estrogen tumors to begin with. In your case, with a large tumor, throwing the kitchen sink, so to speak, at you may have been the best answer. I'm no expert. But you want to stay on the preventative med for at least 5 years. If you're having bad side effects, you can try other meds
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I did not have an oncotype test, because I was clearly stage 3, possibly worse suspected, right off. I had neo-adjuvant chemo, which came close to obliterating the very large primary tumor. It did not clean up the nodes, however. The Ki67 was low from the start. So, my experience with chemo was mixed. On the one hand it clearly "worked," because after the 2nd round, the tumor was halved, and after 4 rounds it was not palpable anymore. On the other hand, I still had 7 positive nodes in the pathology report, which means that I was not down-staged by the chemo.
Anyway, I am still here, which is the main thing. Also, although chemo is scary and difficult and I would dread having to do it again, I really have recovered quite well. I am a bit bit more scatterbrained and forgetful, but that could also be from induced menopause and/or letrozole. I have some neuropathy, but it is 2 tiny spots in 2 of my fingertips. So although it IS a permanent SE, it really is not a big deal either. Other than that, my red and white blood counts are chronically a bit low, but again, not to the point of causing me any problems.
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Leslie13, Sorry, I may have misread the original post but I didn't realize this thread was dealing only with highly estrogen receptive ILC. I thought it was more the more general question of whether or not to do chemo for those with ILC. My mistake.
I plan on staying on Arimidex for as long a my doctor feels I should. SE have not been a problem.
In any case, I'll remove myself from this thread since I am not highly estrogen receptive.
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Dear Gohan1983,
You wrote:
Chemo treatment in ILC remains controversial. However, chemo should be considered in pleomorphic, solid or histiocytoid variant, HER-2 overexpression, Grade 3, or ER-negative tumours, but not necessary in the most common classic subtype of ILC, which is frequently chemoresistant, like many Luminal A-like tumours.
Could you point me to where you gathered this info?
My tumor type would be Luminal-A but is also pleomorphic and Grade 3, so I'm interested in your source.
Many thanks!
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http://www.croh-online.com/article/S1040-8428(14)00129-2/fulltext
But, you should remember, that grade 3 tumours almost never have luminal A-like molecular profile, despite St. Gallen criteria (ER, PR, HER-2, Ki67). So, grade 3 ER+ tumours should be considered as luminal B, regardless of proliferation markers.
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Thanks for your answer, Gohan1983! I didn't know this, and I'll take a careful look at the article you linked me to.
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PR% and Ki-67% may be good indicators of Oncotype dx recurrence score for ILC, according to this recent publication:
http://dx.doi.org/10.1016/j.clbc.2015.08.0010 -
I cannot work out from that though whether it is good to have high PR or low? Same with KI67........anyone understand it?
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it is saying that a high PR status is correlated to a low recurrence score by Oncotype dx. Out of all of the factors they examined, PR status was the best predictor. Low Ki-67 is the second best predictor of low recurrence score.
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THank you GRandma - Good news for me then as my PR was high as well as ER...........85% and 95% respectively. Hormones always been the bane of my life
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I think that they are also suggesting that the oncotype DX test may not be necessary for ILC'ers. That our PR and K167 status can guide us and our medical team with respect to our recurrence rate, especially if we fall at the outer limits of the spectrum for those biomarkers. But I could be wrong. I wish there was more research on both ILC and PR- cancer. Many doctors say that little emphasis should be placed on PR status, especially if the ER is very high. I don't think that is true. Most PR- IDC and ILC land in the dreaded gray zone. It was my PR and K167 status that convinced me to do chemo, not because there was evidence that it would be effective, but because my only other option was anti-hormonals and there is evidence that PR negativity can render anti-hormonals less effective. (At least for Tamoxifen)
MsP
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Does anyone know if the AI´s affect PR + as my understanding is they only block oestrogen uptake and absorption
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Hi Lily - AIs block estrogen production (but not estrogen uptake) in postmenopausal women. I don't think they have any effect on PR. It's important to note that they don't block estrogen receptors on ER+ cancer cells, so women with ER+ cancer should not take estrogen (as in hormone replacement therapy), because it would continue to fuel cancer cells even if AIs are taken.
It looks like our ILC diagnoses were similar - I'm glad you are doing well! I just got my path report back after surgery and found out that the size of the tumor was much larger than thought. I'm concerned now that the single negative lymphnode they removed during surgery may not be representative of the true nodal status!
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Hi - I have read many references to the KI-67 status. Where would I find that - I haven't seen any reference to that on any of my path reports. Thanks
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Stella, the k167 is not always done. Check with your oncologist about that.
MsP0 -
Stella, I scoured my path report several times and no mention of Ki67 either
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I had two path reports done - first one said KI67 of 75% (yup mega high), the second one said 25%...........so all I can think is the first piece of tissue was the centreor core of cáncer área...........the 25% fits with all my other results more than the 75%......
So I am not sure how useful this test really is
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