Never offered Oncotype Test

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Lilac17
Lilac17 Member Posts: 31
edited September 2018 in IDC (Invasive Ductal Carcinoma)

Hello,

I had a 3 mm IDC removed during my core needle biopsy at the end of April. These last months were spent trying to get rid of the DCIS in the same breast while conserving the breast. Three lumpectomies and a bilateral mastectomy later, I met with the oncologist who said I don’t need Chemo. He is starting me on Tamoxifen, once I recover from my surgery.

I’ve done a lot of researching and of course my great fear is distant recurrence. Way back I had mentioned this test where you’d get your odds (I didn’t know the name then) and my breast surgeon said I didn’t qualify. I figured it was because my cancer was too small. Fast forward to now and I contacted the actual company who runs the test and they said they accept 2 mm, so mine at 3mm qualifies

I’ve put calls in to the BS and oncologist, no reply yet. How long are the tumors even kept? Is it too late? Why wasn’t I offered this test by the oncologist at least? I go to a top Boston hospital, so they are well aware of it.

Just curious on anyone’s thoughts?

My oncologist gave me textbook odds of around 10% and possible to cut that to 5% with Tamoxifen. Now I wonder do these textbook odds even mean anything? Testing the actual tumor will give the most accurate odds, right? And can’t a tiny tumor give back bad odds on this Oncotype Test?

I’m 43 and raising 4 kids and willing to do anything to lower myodds

Thanks so much for any advice.

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Comments

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2018

    your physician probably didn't offer the test because it is usually done on larger tumors...greater than .5 cm. AND, the reason why the test was developed was to determine that grey area of who needs chemo and who can safely decline it. Before genomics arrived, doctors knew they were over treating many patients with chemo. The genomic testing has helped patients and their physicians determine which patients the benefits outweigh the risks. Do some patients with Grade 1 tumors need chemo? Yes. Very rarely. But with a grade 1 tumor as small as yours, your doctor and the NCCN breast cancer guidelines do not recommend the test because of your diagnostics and excellent prognostics.


    That said....you do deserve a call from your team

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2018

    The lab keeps the specimen for several years at the very least. I would ask them to at least try to do the test. The sample might be too small, but they can’t tell for sure until they try to test it.Now is when you want to get as much information as possible. You’ll always wonder otherwise.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2018

    furthermore, because your prognostics are excellent....in addition to NOTrecommending Genomic testing...the NCCN guidelines, 2018, ONLY suggest you “consider” endocrine therapy rather than “recommend” it. There is absolutely NO mention of possibility for the need of chemo.

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  • Murfy
    Murfy Member Posts: 342
    edited August 2018

    Lilac17, I think your MO is correct. Your 3mm lesion was ER/PR+ and grade 1, had mastectomy, starting on Tamoxifen. Good for you catching it early! I can understand sending in a 2mm lesion that was grade 3, but grade 1 is typically slow growing and less likely to respond to chemo any way.

    Best of luck!!

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  • wanderweg
    wanderweg Member Posts: 549
    edited September 2018

    I had a 1.2 cm tumor, clean lymph nodes and margins with my mastectomy and both my breast surgeon and MO said they were sure I wouldn't need chemo. But they did an oncotype anyway and my score was high - 38. Guess who is in chemo now? I would INSIST on an oncotype. If it comes back with a low score you can breath a sigh of relief, and if it's high, you will know chemo is in order. Either way, it allows you to make an informed decision.

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  • Okkate75
    Okkate75 Member Posts: 151
    edited September 2018

    My oncologist said tumors under 5mm do not warrant chemo. I'm glad yours was caught early! That's great news.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2018

    When I asked if my 2 year old tumor could get symphony suite test could be done thet said too old. I guess if treatment is not decided a month or 2 from diagnosis then no good for treatment purposes

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