Mammaprint - should I believe a low score

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LillianGish
LillianGish Member Posts: 108

Hi,

I recently had a lumpectomy and the pathology report indicated a 3 cm tumor, grade 3. Three lymph nodes taken and all three were negative. Clean margins. Blood vessels not invaded. Er positive (99%), PR positive (90%), HERS negative (FISH). No Ki67 scored.

I met with the oncologist this week. He had ordered the Mammaprint test, but the results aren’t here yet. He said he uses Mammaprint and not Oncotype DX because he doesn’t like the intermediate scoring system.

Anyway...he asked me to think about a question and I was hoping to get feedback from this group.

What will I do if the Mammaprint score says chance of recurrence is low? Chemotherapy or no chemotherapy?

He said clinically, it’s a grade 3 tumor and over 2 cm, and that could be used to elect chemotherapy. The Mammaprint score might say high chance of recurrence and in which case it’s crystal clear that chemo is called for. But the score might say low recurrence risk. Then what? I got a whole speech on everyone’s preference is different, chemo is poison, etc.

I am leaning towards the answer of chemo because I don’t want a recurrence to realize, gee I should have had chemo. Throw everything at it to keep the cancer down. My mom and her mom died of cancer (different kind).

But I also don’t want to make decisions based in fear. I’m not afraid of chemo at all...and I’ve read about the short and long term potential side effects. I am afraid of recurrence though.

Can I rely entirely on the Mammaprint score to tell me whether to have chemo or not?


Could use some advice on what to do if the score comes in low. Thank you

Comments

  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2018

    Idk about Mammaprint but I did have the Oncotype test. My score was low - 11 with an 8% chance of recurrence. This percentile included taking Tamoxifen which I did for 5 years. Because of my low score I did dodge chemo and I was glad of that.

    My stats are different than yours though. I had IDC, Stage 1b, Grade 1. My BS said I had a wimpy cancer whatever that really means. I also had 33 radiation treatments in lieu of chemo. They were a walk in the park compared to chemo.

    It’s your call of course but I never once considered doing chemo despite my low score. Btw I was 7 years out last August

    Good luck whatever you decide.

    Diane

  • bevin
    bevin Member Posts: 1,902
    edited November 2018

    hi there, I am grade 3 , 2cm and similar stats, 5 lymph nodes removed, all clear. I was offered chemo and was also told I would do well with 36 radiation treatments and 5 years of antihormonal. I struggled like you are with the decision. I was 45 at diagnosis so fairly young and was afraid of not doing it. Ultimately decided to skip it as side effects are many.

    I am 8 years out now and still doing well. Whatever you decide regarding chemo with er+ your best tool is to faithfully take your antihormonal. Dont skip or drop out of that piece of treatment . Its key to reducing recurrence rate and its powerful. Good luck with your decision.

    Bevin


  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2018

    I was clinically at risk with a positive lymph node and high ki67, was grade 2 and had a low risk mammaprint result. The oncologist recommended against chemo so I didn't do it. They left the ultimate decision up to me but basically told me what the best choice was. I appreciated that.

  • Dani444
    Dani444 Member Posts: 522
    edited November 2018

    I was a bit the same as gb2115 with a clinically high risk. My tumor was 4.8cm, 2 positive nodes with extranodal extension. My mammaprint came in at low risk so my MO said chemo would not be beneficial for my case. My tumor was grade 2 and I am stage 1b.He didn’t give me a choice just told me I would not benefit from it. I will be doing rads for the positive nodes. Best of luck with your decision.

  • LillianGish
    LillianGish Member Posts: 108
    edited November 2018

    Thank you for your replies! I really appreciate hearing about your decisions.

    Sadly, I’m still waiting for my mammaprint score. Don’t quite understand why this should take a month, but it has given me time to think.

    Too much time!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    All the time between tests and waiting for appointments... and now you have this question to chew on that could be completely moot!

    I wonder whether you could arrange for a second opinion to coincide with the mammaprint results? You could always cancel if the mammaprint comes out high. But if it's intermediate, maybe it could be useful to have a second opinion? Or maybe in that case get the oncotype, either from your doc or second opinion doctor

  • JosieO
    JosieO Member Posts: 314
    edited November 2018

    Lillian,

    Allow me to add a few comments from my own experience with MammaPrint testing:

    1) waiting time is longer than what we expect. Not sure exactly why, but I do know that the tissue slides are specially prepared and are not processed locally. And because there are such a large number of gene expression assays evaluated (70 for MammaPrint vs 22 for Oncotype) there is a lot of information to collect and evaluate.

    2) MammaPrint is generally thought to give a more definite, yes or no answer, whereas Oncotype had an “intermediate” category that was subject to more individual interpretation. The very recent (2018) results of the TAILORx clinical trial were intended to further “tighten” interpretation of a “mid range” score from Oncotype testing.

    I believe that for these reasons (and probably others) that MammaPrint is often used to add clarity to Oncotype results, but I don’t believe that Oncotype is used to clarifyMammaPrint. (If someone has had that experience with both tests, that would be very helpful to understanding)

    There is also the issue of how one’s insurance will cover the testing. Some policies only cover one or the other, not uniformly both.

    Like others who have commented, I also had a large tumor and lymph node involvement-what might be referred to as “clinically high risk”. But my MammaPrint results clearly showed “low risk” and I was advised that chemotherapy would not add value. I followed that advice and proceeded with radiation and hormone therapy. I am comfortable with my decision.

    I do encourage you to discuss with your medical team, and make sure you understand the tests and how they are interpreted. Then you will have peace of mind in the information and your decisions.

    Best wishes to you.

  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2018

    I asked my BS why they used Oncotype testing instead of Mammaprint and she said it was because the test had been around longer and they had more confidence in the test. Their opinion of course but the vast majority of oncologists where I live use that test. I also asked my radiologist her opinion on the veracity of the test and she said it was a good barometer and I should feel optimistic about my test results.

    I had a low score so there wasn’t any discussion about further testing plus my tumor was small. I was IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments. 7 years out last August.

    We have BC/BS insurance and they paid for the test. At that time it was $5k. Genomic Labs performed the testing. They did say if insurance refused to pay for it they would work out a payment plan with a sliding income scale. Make no mistake I would had the test one way or the other. My test results allowed me to dodge chemo. I have an 8% chance of recurrence which included taking Tamoxifen for 5 years which I did.

    Good luck!

    Diane

  • LillianGish
    LillianGish Member Posts: 108
    edited November 2018

    Thank you for explaining why Mammaprint takes longer. And I did talk to an oncologist for a second opinion....and my radiologist and surgeon.

    I’m still waiting for the Mammaprint score, but after much deliberation....I’ve decided to have chemo. My tumor was grade 3, the size was 3 cm, I have many close family who have died of cancer metastasizing (including my mom and her mom)....and I will do everything I can to avoid my children losing their mom the way I saw mine leave this earth. For me.....chemo is the right choice and I feel very good about the decision.

    Maybe the test will say low chance of recurrence, but I’m just not comfortable risking my life on it. My oncologist said it was a reasonable approach.

    Thank you all for your helpful feedback!

  • LillianGish
    LillianGish Member Posts: 108
    edited December 2018

    I feel like one of those old 70's tv shows where there's an epilogue at the end to tell everyone what happened to the suspects after trial...lol.

    So, I received the Mammaprint score today and it said there's a high risk of distant recurrence - 29% without chemo and hormonal therapy. Chemo was definitely the right choice and I had my first treatment today. With chemo and HT, 94.6% of the Mammaprint data base were distant metastasis free at 5 years. I know ER positive cancers have higher risk for spread after five years, but I think that's out of my hands now. I'm doing everything I can do without regret.

    Just wish I had this test earlier. It's clear from the report, they didn't get the request until 3 weeks after surgery, so no wonder I just got the results. Grrrrrr.

  • Egads007
    Egads007 Member Posts: 1,603
    edited December 2018

    Very happy to see you have a treatment plan in place...and that you’ve made good with it, that is so important. I’m also crossing fingers that your chemo is a smooth ride!

    I have to say, LOVE your screen name and profile pic...it’s 23 shades of awesome! If I had it to do over I’d change my ID to ‘Clara Bow’ :))

  • Diveslikeagirl
    Diveslikeagirl Member Posts: 74
    edited December 2018

    LillianGish: Can you give a link to your source regarding this statement:

    With chemo and HT, 94.6% of the Mammaprint data base were distant metastasis free at 5 years. I know ER positive cancers have higher risk for spread after five years, but I think that's out of my hands now

    I got a Mammaprint as well and got the report that comes with it, but I wasn't aware of any database. Is that a searchable/interactive database? I would appreciate learning more.

    Thank you!

  • LillianGish
    LillianGish Member Posts: 108
    edited December 2018

    Hi Egads ~ Thank you and I love Clara Bow too! You would have made a great It Girl.

    Diveslikeagirl ~ most of the quote is from my own Mammaprint report. On page 1 of 3 at the bottom, there is a bar graph titled "Predicted Benefit of Treatment at 5-Years." The bar graph says 94.6% (DMFI), meaning Distant Metastasis Free Interval. I think this is my particular score based on my genomics. I interpreted it to mean that only 5.4% of population data base that they compared me to, who also had my tumor's characteristics, had distant metastasis at the five year mark after chemo and hormone therapy. Mammaprint studied a group of women and their experience, and that is the database that Mammaprint compares you to when they give you the score.

    On the second part of my quote, that is from a few different readings where I read that estrogen positive breast cancer has a higher recurrence rate after five years, compared to some other types. I found this particular article informative, in case it's helpful. This article is from 2014 so it's a bit old, but when I read it it helps me think. To be clear though, I'm so new at this, please don't let anything I say be hard evidence. I totally admit I'm not an expert.

    https://www.ajmc.com/journals/evidence-based-oncology/2014/september-2014/recurrence-of-breast-cancer-years-after-the-initial-tumor?p=2

  • Diveslikeagirl
    Diveslikeagirl Member Posts: 74
    edited December 2018

    LillianGish: Thanks for the info. I understand about not being an expert, but isn't it wonderful how so many people on these boards are seeking science and trying to understand what is happening to them? I sometimes get skeptical looks when I tell someone about something I've learned on these discussion boards; they equate them with Facebook-like forums. But this is a special group and we have great moderators as well. We're definitely ahead of the curve (on this topic, at least).

    It's time to go back to my MammPrint report then and see what it says. And as you pointed out, 2014 could be considered old when it comes to BC research. That's one of the things my MO made clear to me when he laid out my plan and prognosis. I am on Herceptin which is considered somewhat "new" in that it's only been in use for about a decade, so the data from everyone using it is only now starting to show up in meaningful studies. He pointed out that outcomes and statistics could improve in as little as five years. So the statistics from 2014 have almost certainly changed. I'm going to stay on plan and keep watching the research and keep challenging my docs. (They probably see me more as a PIA than a challenge!)

    Mindy

  • LillianGish
    LillianGish Member Posts: 108
    edited December 2018

    Completely agree with everything you said Diveslikeagirl! This board has been wonderful for me because I like to research and read quality material. When I go to the outside Dr. Google, I usually come away reaching for my anxiety medication!

    Wishing you well on your efforts. Smart women ROCK!!

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