Oncotype DX 22 and MOs don't recommand Chemotherapy

LilyY
LilyY Member Posts: 13
edited December 2017 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with pleomorphic invasive lobular carcinoma on 7/21/2017 (two months before my 50th birthday).The tumor size is 2.3 CM, grade 2, and 0/10 lymph node positive, ER+(90%), PR+(60%), HER2- .My Oncotype Dx score is 22.I saw three Medical Oncologists for my treatment plan after left breast mastectomy surgery.First MO said " It's up to you to choose chemotherapy or not" and she recommended Tamoxifen for 10 years.The second MO didn't recommend Chemotherapy but he will do it if I decide to have chemotherapy.He also recommend ovarian suppression + AIto me since I still have my period.The third MO didn't recommend chemotherapy and she said my type of breast cancer is not sensitive to chemotherapy and I couldn't get much benefit from chemotherapy if there is any benefit and moreover the side effects of Chemo might last life time long.Is there any new treatment trend for pleomorphic invasive lobular carcinoma recently?Is it safe for me to skip Chemo?

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    I would say the risk of chemo outweighs the benefit as the 3 mo's have said. You are doing hormone therapy that should help protect you. Have you asked about going into menopause so you can take AI drugs?

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  • lrwells50
    lrwells50 Member Posts: 254
    edited November 2017

    My OncotypeDX score was 24. The test said even with an AI that I had a 16% chance of recurrence. He wanted me to do AC+ Taxol. My breast surgeon had told me if anyone wanted me to do chemo, to call him first. He recommended a second opinion. The second MO said he wouldn’t have done an Oncotype with that small a tumor, but since the first MO did, and the score was what it was, he would recommend chemo. At least he only wanted to do 4 rounds of TC, which I did. I knew if I hadn’t chosen the chemo I would have worried myself to death. I started out with a biopsy that said the tumor was IDC, but the biopsy after the surgery was changed to ILC, and that was another thing that convinced me to do the chemo

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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    Meow13 and Irwells50:

    Thank you for sharing your thought and experience with me.I'd like to give you little more details about my treatment plans.The first MO is from a Kaiser medical center and she recommended 10 year Tamoxifen for me.The second MO is from Stanford Women's cancer center and he recommended Ovarian Suppression(OSF) + AI(exemestane) for me. The second MO told me there were two clinic trials called "TEXT" and "SOFT" proving "premenopausal women with hormone receptor–positive, HER2-negative disease and high recurrence risk, as defined by clinicopathologic characteristics, may experience improvement of 10% to 15% in 5-year BCFI with exemestane plus OFS versus tamoxifen alone. An improvement of at least 5% may be achieved for women at intermediate risk, and improvement is minimal for those at lowest risk." For details about the TEXT and SOFT trials, you can search the internet since I am not allowed to post link on this message board.

    My third MO is from UCSF Carol Franc Buck Breast Care Center and she thought the treatment plan of the second MO is complicated so she recommended Tamoxifen for now and AI after my menopause.

    I don't know which one is the most suitable treatment plan for me without Chemo.

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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    My MOs told me that my 10-year distance recurrence risk is 14% with Tamoxifen alone and about 11%-14% with chemo+Tamoxifen. Considering the side effects, they didn't recommend chemo for me.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    LilyY, I hate to mentiin my SIL who just past away. She developed GYN cancer presumably from tamoxifen. This is extremely rare but if you do take tamoxifen make sure they are monitoring your uterus my SIL's doctor seemed to drop the ball she actually had to push him to look at a growth that was emerging. AI drugs don't seem to have this risk but you can develop permanent side effects like joint pain.

    The good news is AI drugs are proving to be very effective against ILC and hormone positive cancers, maybe better than chemo.

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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    Meow13,

    Thank you for your suggestions. I am taking Tamoxifen now and might switch to AI+ Ovarian Suppression after I meet the second MO in early Jan. 2018.

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  • Optimist52
    Optimist52 Member Posts: 302
    edited November 2017

    LilyY, Our diagnoses are very similar except my tumour size was 4cm (second time diagnosis). My Oncotype score was also 22. My MO was quite certain that chemo was not worth doing with that score. Another MO I saw agreed with that. I believe that AI drugs are more effective with ILC. Mine was also pleomorphic. I had the itching too that you mention in the MRI thread. I hope you're doing ok.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2017

    UCSF and Stanford are NCCN (National Comprehensive Cancer Network) centers, so I would expect good advice from them. The SOFT trial that the Stanford onc is citing is important research. Also, there is some evidence that Tamoxifen may be less effective for some ILCs; please discuss with the oncologists. (I can elaborate if you like.)

    I would ask for a test such as Mammaprint to see if this cancer is luminal A or luminal B, because of the intermediate Oncotype score and the lowish PR. If luminal B (riskier), I think more aggressive treatment than just Tamoxifen would be recommended; that is, OS + AI.

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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    ShetlandPony and Optimist,

    Thank you for your reply and suggestions.If I want to take a Mammaprint test, which doctor should I ask for (Breast surgeon, Medical Oncologist, OBGY doctor or my primary care) ? My Oncotype test was ordered by the first MO when I had health insurance with Kaiser but I switched my insurance to Anthem Blue Cross in October so I couldn't back to my first MO any more.

    I was very healthy and ran 5 miles daily before I was diagnosed with PILC.I'd like to take the aggressive hormone therapy in the first round of the fighting with breast cancer if it is suitable for my situation.

    ShetlandPony,

    Are you familiar with MOs at Stanford Women's Breast Cancer Center? Any recommendation or suggestion?

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  • toomuch
    toomuch Member Posts: 901
    edited November 2017

    Lily - I was diagnosed with PILC in 2010 premenapausal at age 48. I had read a small study that showed that ILC responded better to AIs then Tamoxifen and against my MO's recommendation I had my ovaries removed so that I could take an AI rather then Tamoxifen. Several years later a larger study was released that supported my decision. These decisions are difficult and I think that the most important thing is that you be comfortable with your final decision so that you won't question yourself moving forward.

    I am including a links below.

    https://www.medscape.com/viewarticle/851937

    http://www.ascopost.com/issues/february-15-2013/fo...



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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    Toomuch,

    Thank you for sharing your experience and information with me. One of my MO suggested the Ovarian Suppression + AI treatment plan and he said he would use medicine to shut down the ovarian function and the ovaries don't need be physically removed. Since PILC is more aggressive than classic ILC and I am premenopausal, I am seriously considering the Ovarian Suppression + AI treatment plan now.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2017

    LilyY, you could start by asking your MO for the Mammaprint. However, your surgeon can also order it and would be familiar with it. I suppose theoretically your PCP or OB/Gyn could do so as well but they might not be as familiar with it and it could be more of a struggle for them to convince your insurer to cover it. Good luck.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited November 2017

    I had to push my MO for Mammaprint. My Oncotype was 14 -- which I know calls for no chemo across the board or did with my docs -- but I just wanted to make damn sure I was making (hopefully) the right call. Plus, I like having any and all this info that I can get.

    Now, that said, my insurance denied doing Mamma after Oncotype, which I can't even blame them for, but it cost just $500. I was not surprised they denied. Attached to the 4k bill was an adjustment for $500. Peace of mind $ that I was glad to pay. This just occurred in July.

    So push your MO or your BS if you have to -- knowing insurance may not pay -- but okay if you are fine with the $500 charge. If they tell you that you don't need it, tell them yes you do. It's such a hard decision to have to make.

    {Hugs}

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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    Hopeful and EastcoastTS,

    Thank you for your replies. I will ask my current MO to request a MammaPrint test for me next week. I will pay the bill if the insurance company denies my test.

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  • Momine
    Momine Member Posts: 7,859
    edited November 2017

    According to my doc, an AI is more effective with lobular cancer than Tamox is. As a result he supported the idea of taking out my ovaries (I was also pre-meno at DX), so I could go straight onto an AI. The decision was also supported by the facts that my mom had ovarian cancer and that my aunt had uterine cancer. Especially because of the latter, I wanted to avoid Tamox.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited November 2017

    When I had a 21 onco-score, my MO said I could get the mamma-print and probably have insurance pay, bc I was in the intermediate range of 18-30. I'm not sure if this is always the case, but hopefully, it will be for you. I didn't do it, bc I was too anxious/impatient to wait another 2-3 wks for the results...

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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    Momine and Keepthefaith,

    Thank you for sharing your experience and knowledge with me. I am from a big family and have a lot of relatives but no one has/had any type of cancers so after I submit the family medical form a geneticist called me and told me that it is not necessary for me to have any genetic test. Except the pathology report, the Oncotype test is the only test I had. After left breast mastectomy, I had neither radiation therapy nor chemotherapy. Sometimes I wondered whether my PILC is undertreated? Hope both my MO and insurance company allow me to have MammaPrint test in next week.

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  • barcelonagirl
    barcelonagirl Member Posts: 52
    edited November 2017

    Hi LilyY! I'm so sorry to read that you're going through all this questioning. 5 years ago, just before my 50th birthday, I was diagnosed with IDC. My Oncotype came back 21, and my docs weren't thinking I would need chemo (2 smaller tumors 1.4 and 1.5, no nodes, ER+, HER2-) Like you, other opinions were ALL over the board! They ended up putting me in a trial for the MammaPrint test (trial results are now out) and I came back High Risk! Crazy! Was NOT expecting that outcome. Did 8 rds of chemo, and 5 years later feel great. But had I not gotten the MammaPrint, I think back to what my out come could have been down the line. The PROMIS trial results came back and showed that intermediate Oncotype range of 18-30 had MammaPrint High and Low Risk throughout the range. In fact there were as many Low Risk as High Risk results for a 21, and same for a 29! Bottom line, you can't look at the clinical pathological factors and think you have a clear answer. And yes, your med onc or breast surgeon can order the test. It's covered by BC of CA now, and they will often cover the second test when you get an intermediate result! (there is also a financial program if it's not covered.) Usage of MammaPrint is picking up as it was just included in the ASCO guidelines, among others. Happy to answer any other questions, as I was such a believer in the test, that I now work there as a patient advocate!

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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    BarcelonaGirl,

    Thank you for your reply. I sent a MammaPrint test request to my MO but haven't received his approval notice yet. The nurse told me doctors at Stanford Women's Breast Cancer Center usually don't order MammaPrint test for patients. If my MO finally denies my request, I don't know what should I do for next step.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited November 2017

    OK I don't have the same diagnosis as you, but I am an old school 22 from 2009.

    It is what it is. You will live with some higher risk. But I am glad for my choice and boy is is different now than 09.

    I'm kind of glad 22's are not getting pushed into chemo.

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  • LilyY
    LilyY Member Posts: 13
    edited November 2017

    My MO denied my request for MammaPrint test. He said "MammaPrint test will not provide any additional information as to your true risk of recurrence. Granted, it does result with either a low or high risk (and no in between) it rarely changes the regimen of treatment."

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  • lrwells50
    lrwells50 Member Posts: 254
    edited November 2017

    LilyY, that’s the answer I got from my MO too.

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  • lrwells50
    lrwells50 Member Posts: 254
    edited December 2017

    I was diagnosed on 12/05, and for various reasons, one being the Christmas holidays, I didn’t see the breast surgeon until a month later. He gave me a bunch of choices, and told me there was no rush, to take my time to do my research and make a decision. My BMX was 3/8, and my OncotypeDX was an unexpectedly high 24. (Not that that score is high, just higher than the docs anticipated) by the time I decided on chemo, it was 5/19, which is a little too long.

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  • LilyY
    LilyY Member Posts: 13
    edited December 2017

    Irwells50,

    If your breast cancer type is pleomorphic invasive lobular carcinoma(PILC), your Oncotype test score usually falls in the intermediate range. One research paper indicates the Oncotype test scores of 70% of PILCs are in intermediate range. But classic ILCs usually have low Oncotype test scores. I hope the TAILORX trial results about the intermediate risk cohort will come out in this December so we know if this group of people can benefit from Chemotherapy. The TAILORX trial started in 2006. The good thing and also the bad thing are the patients in the intermediate risk group in TAILORx trial have been doing so well that there haven't been enough recurrences or other events yet to complete an analysis.

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  • lrwells50
    lrwells50 Member Posts: 254
    edited December 2017

    LilyY, I had read that, but mine is classic. I think it actually said lobular with ductal characteristics. My radiologist said he thought that was the first time he had seen it. He usually sees “ductal with lobular characteristics.”

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  • Amelia01
    Amelia01 Member Posts: 266
    edited December 2017

    Irwells, Mine is also lobular with ductal characteristics, the MO didn't seem to think it was rare, but casually said that 5% of his patients have it (doesn't that mean a small minority?)

    Being premenopausal he suggested I do AI and not Tamoxifen. From what I've read about Tamoxifen, I'm happy not to do it.

    I'm slated for chemo and radiation, probably due to node involvement. Up until the pathology report (which reveled nodes and the ductal aspect) everyone spoke of only hormone therapy with a bit of radiation. Now, they are throwing all their guns my way.



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