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Unclear about Oncologist’s treatment plan

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I am so happy to have found this forum. I have read so many conflicting accounts of how to treat ILC that I don’t trust my oncologist’s plan. 

I have ILC - classic with Pleomorphic features, Onco DX score 16, tumor 7.7 (but really two masses measuring ~5 cm total and cancer cells in between them), no nodes.   I had a mastectomy with clear margins.

I have been told by the head of breast oncology at a NYC university that I needed an oncotype score of less than 20 to skip Chemo. My surgeon thought I needed 16-17. But my oncologist still wants me to do chemo bc the oncotype study was limited to ppl with tumors up to 5cm and it doesn’t predict ILC as well as it does IDC. Even after chemo she wants me to do lupron and letrozole — and I don’t even want to do lupron and letrozole, I want something less taxing like tamoxifen. I am premenopausal, 47, 48 in June, and I have read so many conflicting reports on whether chemo works for ILC. My oncologist told me she consulted 5 other doctors and 1 said chemo was a tough call bc it may or may not work, and one said no chemo, do a targeted therapy (but she doesn’t think I’ll get approved for it). The rest agreed with her. But I have heard that MSK is very aggressive and risk averse. 

I know I have a high grade tumor and the pathology report said ILC with pleomorphic features so it’s more aggressive—but again, having heard conflicting opinions on chemo or no chemo I feel like I need a third opinion. 

Does anyone have an oncologist in NYC they recommend? My current one won’t refer me to the ones who said no chemo.

Thank you!

More details:

Surgery 4/11/23 Left: Mastectomy, Tissue Expander awaiting exchange surgery after radiation, planned in June. 

DX 3/23, left, Stage IIB Grade 3, ER+, PR+, HER2-, Node -

Comments

  • kaynotrealname
    kaynotrealname Member Posts: 422
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    I don't have an oncologist to suggest for a second opinion but I do want to remark that yes lobular may not respond as well as IDC to chemo but a lot of that has to do with it usually being a slow growing tumor. Your's is grade 3 and it's features say it's aggressive. That's probably why so many oncologists are wanting you to do chemo. They believe you might have results. Secondly, I know endocrine therapy is uncomfortable to think about but AI's (lupron and letrozole) statistically speaking do better with the more aggressive tumors. Also you're young and have got a long life yet to live. If you go aggressive now you hopefully won't have to do aggressive later when it's whole other ballgame due to age or maybe even stage. Anyway just something to think about and I wish you the best of luck in making a decision.

    Is Memorial Sloan near you? If so they do second opinions and I know are a NCI hospital. https://www.mskcc.org/news/what-to-know-about-getting-second-opinion-after-cancer-diagnosis

  • mandy23
    mandy23 Member Posts: 113
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    altbnd -

    Sorry for your diagnosis, but glad you found this forum!

    I know that ILC has always had some questions about chemo and how well it responds. That being said, grade 3 does show that your tumor is aggressive and it is already very large. ILC is also known to be more likely to show up in the other breast later. With you being younger, you might want to throw everything you can at it. However, it probably would be a good idea to get another opinion as that is always something that helps in decision making.

    Interesting that you are afraid of letrozole. My story is that I was dxd in 2003 with a very small ILC tumor and widespread DCIS. I had a unilateral mastectomy. Then I had an oopherectomy so that I WOULD BE ABLE TO TO GO ON letrozole as I was terrified of tamoxifen. ☺️ I had also read a lot about letrozole (Femara at the time) being a "better" drug especially for ILC. At the time, it was very new and not really approved for early stage bc (it was being widely used for MBC). My onc also felt strongly about using it, so prescribed it for me. It had some side effects, but nothing I wasn't able to deal with. Most important it kept me 'safe' for 19 years. I was dxd last fall with IDC this time—- a new bc in the other breast, grade 3 this time, so I did have to have chemo even though it was small. It wasn't pleasant, but I got through it and am now recovering and getting ready to see my onc at the end of the month. Once again, I will be taking letrozole and happy that it is available to hopefully keep me 'safe' once again.

    Regardless of whether or not you do chemo, I strongly advise you to at least try letrozole. If the side effects are too much to deal with, you can always switch to tamoxifen, but you never know, it might be doable for you.

    Good luck to you. Hang in there. None of this is easy for any of us….

  • skv0123
    skv0123 Member Posts: 9
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    I am so sorry.

    I wonder about seeking out an ILC onc specialist. I would imagine there is one in New York. I'm confused that they won't refer you to a specific onc because they said no chemo. That seems odd & controlling.

    Chemo can be helpful for ILC and I think ovarian suppression & the tamoxifen/AI could be as important. I did ovarian suppression for a year & took Tamoxifen then had my ovaries out 1 year later.


    I tried letrazole & experienced serious symptoms of depression. I went back on tamoxifen for another year & then started armidex which is a different AI. I needed to add Wellbutrin due to some mild symptoms of depression but it's manageable.

    Unfortunately, the AI's are shown to be more effective for the prevention of ILC. And, this is your body. You need to do what makes you feel the most comfortable & safe.

    You do have options. Talk talk talk with your onc. & take the time to find the one that supports you & talks with you etc.

  • lillyishere
    lillyishere Member Posts: 775
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    altbnd, are you saying you prefer no chemo and no treatments for an aggressive and large ILC? Believe me, none of us want these treatments we are on but when it comes to living or dying, we get the treatments. About 42,000 women in the U.S. die each year from breast cancer.

    I have seen 4 different opinions. If I was you, I would look at another opinion from MSK in person or MD Andreson in Texas if you can have a zoom visit. One thing I learned is that tamoxifen is not very effective for ILC. Lupron+letrozole treatments are so far the most effective treatment. I wish you the best of luck.

  • tammy9
    tammy9 Member Posts: 3
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    Hi.

    I have recently joined this forum as I was dx with grade 2, Stage IlB ILC (including LCIS and DCIS) in my left breast.

    I'm aged 49 years and apart from being a femaie, I don't bear the obvious risk factors for BC. So this has come as a shock to me!

    My surgery was a week ago. The histopathology showed that the margins and lymph nodes were clear and the mass measured 23mm (not sure why I have been staged 2b as I readings suggest 2a)?

    I opted for a wide excision, some lymph node removal, breast conserving surgery to my left breast and a reduction on the right breast.

    In Australia, there is limited information about Invasive pleomorphic lobular carcinoma. As I have this type of BC, my treatment is suggested to be a course of radiation and hormone therapy - Tamoxifen for 10 years.

    Chemotherapy was not recommended by the oncologist team so I won't be having it as part of my treatment.

  • devoinaz
    devoinaz Member Posts: 40
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    I had ILC, too, and at first it looked like it was a grade 2 cancer that was slow moving, 2.4 cm long, and not in my lymph nodes. But then the Oncotype test came back at 27, so my MO said I needed to do chemo - no question with that Oncotype score and my age (I'm 50).

    So, I did 4 rounds of TC chemo this spring. It was no fun, but I got through it. I wondered a bit about whether it made a difference that I had ILC and if the chemo would be effective, but I also want to do everything I reasonably can to reduce my future risk of recurrence. I did get a second opinion, and that oncologist affirmed that my treatment plan is exactly what she would recommend.

    I also just had a double mastectomy to get rid of the remaining LCIS that was lurking in my breasts after my original lumpectomy, so my approach is definitely aggressive on the treatment. I figure I'm relatively young and strong now, though, so my body can handle it and bounce back pretty well. And I had kids late, so my kids are still in middle school. I need to stick around for them - and for me, too!

    It's not fun to go through, but I feel lucky that there are these treatments available and that a lot of people get through this particular type of cancer and go on to live long lives. I'm hoping to be one of them!

    I don't know exactly what the science is on ILC, tumor size and grade, and chemo, but I do think there are some academic papers that I came across when I was trying to learn about my situation. I think they basically suggested that chemo is reasonably effective for ILC with aggressive features, but the sample sizes in thoseweren't that large.

  • gm6789
    gm6789 Member Posts: 6
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    I'm sorry to hear about the depression. Has there been research on this? Would be curious to see it. Thanks.

  • skv0123
    skv0123 Member Posts: 9
    edited August 2023
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    gm6789 - Thank you. i did find some research. I copied two studies below. There are cases of an AI causing significant depression, even suicidal ideation, in people.

    My onc had 2 other patients experience this as well.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6048955/

    https://pubmed.ncbi.nlm.nih.gov/36462308/