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grade 1, Oncotype 35

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windingshores
windingshores Member Posts: 160

My cousin has a grade 1 IDC, 1.7cm, ER/PR+ (ER is 90% I believe), HER2- but Oncotype is 35. I got her text at 3 am and was shocked.

For grade 1 tumors less than 1cm, 97% had low Oncotypes. Granted hers is slightly larger.

She is 70, already in ill health with IgA immune deficiency (she has been getting IVG) with frequent sinus and ear infections, tachycardia at times, has chronic fatigue and fibromyalgia and was in the hospital two years ago with breathing issues.

She had a mastectomy of one breast, no positive lymph nodes and no LVI that she has told me about.

I read that there is some discordance between Oncotype and Mammaprint and wonder is she should have the latter. I do not know her ki67%. I would also recommend she call the Oncotype folks and discuss why hers is so high.

Any advice? I am going to call her this morning.

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  • meow13
    meow13 Member Posts: 1,363
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    My oncodx was 34, I had 2 tumors one ILC and one IDC each 1cm, er 95% pr negative. My oncodx stats and sample size led me not to have chemo, also the tumors were slow growing grade 1 and ILC was grade 2.

    I am on year 12 NED had mastectomy in 2011 DIEP in 2012, did 4 years AI drugs. I was 53 when diagnosed and now going to be 65 in good health.

    I had a scare with my gallbladder in December undetermined mass so I had the whole thing removed turned out to be gall stone no malignancy.

  • windingshores
    windingshores Member Posts: 160
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    @meow13 what do you mean when you say your OncotypeDx stats and sample size led you to not have chemo?

    Interesting that you also had (partially) grade 1 and PR negative but high ER.

    I would like to be able to better explain your response to my cousin.

    She is medically fragile and I really fear for her with chemo.

  • meow13
    meow13 Member Posts: 1,363
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    I always thought it was the total absence of progesterone receptors that drove my number higher the sample size was 651 and the idea that doing chemo would take my statistical risk from 23% to maybe 11 to 15% did not impress me, also the slow growing score. Also my number or risk factored in using tamoxifen for 5 years, I found studies indicating better responses for AI drug Arimidex in cases of pr negative.

    So I chose no chemo and did 4 years on different AI drugs, stopped due to side effects. I was a healthy 53 year old when diagnosed and now going to be 65 this year still healthy.

    Did a left side mastectomy and DIEP reconstruction 2011 and 2012. So far so good no recurrence.

  • windingshores
    windingshores Member Posts: 160
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    Thank you! The negative PR seems like a reasonable explanation for the higher Oncotype and the high ER must have been helpful with AI treatment. Good point about Arimidex lowering risk more than Tamoxifen too. I really appreciate your response.

  • windingshores
    windingshores Member Posts: 160
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    My cousin's Oncotype has ER at only 7.4, cutoff at 6.5, so low positive. And PR 5.2 with cut off at 5.5, so high negative.

    Distant recurrence risk at 9 years with Tam alone 23%. Group average absolute chemo benefit >15. I assume that means that chemo brings risk down to 8%.

    Grade 1. just under 2 cm IDC.

    She is so medically fragile, chemo seems risky for her, but so is no chemo. I bought hr a book and am going with her to her oncology appt. to listen. I am hoping she goes to Dana Farber for a second opinion as a complex case.

  • meow13
    meow13 Member Posts: 1,363
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    She does have a more complex case, I am sure having all inputs evaluated the right decision will be reached. Sometimes the patient is left to their own conclusions. Remember that oncodx is a only one tool to assess risk and to aid in decision making. If she does choose a more aggressive approach using chemo remember she can dis continue at anytime.

  • windingshores
    windingshores Member Posts: 160
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    I agree. I had to make my own decision after getting 4 opinions! My case was the opposite: grade 3, LVI. high ki67% and low Oncotype. I am urging my cousin to go to Dana Farber since her current doc is in the boonies. I also think trying chemo with the idea of discontinuing if too damaging is probably the best ocourse. Thanks for your responses @meow13 and wishing you continued cancer-free life.

  • sunshine99
    sunshine99 Member Posts: 2,696
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    windingshores, I find this thread interesting. I'm glad you are there for your cousin. Her case does, indeed, sound complex.

    It's hard to know what to do when you are already medically fragile. I read, in one of the many books I downloaded to my Kindle, that a mastectomy would prevent a recurrence. WHAT??? It sure didn't do that for me! I was also part of the TailoRx study which looked at Oncotype scores and then studied at which point chemo was beneficial. My score was on the lower side, but I was randomized to get chemo. I did not have radiation as I had a mastectomy with no lymph node involvement.

    When I was diagnosed with Stage IV breast cancer with mets to my bones, I met with the radiation oncologist who told me that the study found that chemo did NOT benefit those with a lower score like mine. That being said, I'm still glad I got chemo. I think if I hadn't, I would have felt like the progression to Stage IV was my fault because I didn't do enough to prevent it.

    I like the idea of having your cousin go to Dana Farber and am glad that you can go with her to be her second set of ears. I think I, too, would opt for the chemo knowing that I could stop if it got too rough. 70 may sound "old" to some, but she still could have many good years ahead of her.

    I'll save this thread to my Favorites so I can follow her status.

    Thank you for being there for her.

    Carol

  • windingshores
    windingshores Member Posts: 160
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    @sunshine99 thanks for sharing your story. Now that I am 8 yours out from diagnosis, the graph on Oncotype shows a worse scenario without chemo soon. At the time I was focused on shorter term I guess. My Oncotype was 8 with 6% risk, and every doc as well as Dana Farber tumor board all recommended AI only. I get that you don't regret the Tailor X arm giving you chemo in light of your recurrence.

    (Off topic, but how did you discover mets? Everyone seems to discover them while investigating another problem...)

    I am just back from my cousin's appointment. The oncologist spent two hours with her. We kept asking about the discordance between grade 1 and the doc's statement that her cancer was fast growing. He did not have pathology with him and she has not seen it! I asked if he could print it out and he then told me she is actually grade2, with a high score for tubular differentiation.

    My cousin currently has GI issues, low white blood cell count, IgA deficiency (treated with IVG), chronic fatigue and is not all that functional. The doc told her all about chemo and side effects and treatments for side effects. She gets her port in soon and will do docetaxel and cyclophosamide, 5 hours every three weeks for three months.

    There is no way she is up to a trip to Boston. Her energy level is so low. I gave hr some docs at Dana Farber, the phone number and offered to drive but let it go after the appointment. I think DF would also recommend chemo.

    Good luck with your situation, and again thanks!




  • sunshine99
    sunshine99 Member Posts: 2,696
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    windingshores, I found a lump in my armpit in February 2020. I went to my PCP who ordered an ultrasound. That led to a biopsy, which led to the Stage IV diagnosis with mets to my ribs, spine, hip and femur. This all happened just as the pandemic was taking off. Extra fun, right?

    I'm glad she's getting a port. I didn't have one but didn't really need it. I would consider it if I went back on an IV chemo drug.

    I wish you and your cousin the very best.


  • windingshores
    windingshores Member Posts: 160
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    Given my cousin's medical fragility, I wonder if she could do just the taxol (taxotere) rather than both taxotere and cyclophosphamide. It seems the latter is the toughest to tolerate. I understand that two meds might be better than one but I noticed that many posters on this forum "just" do a taxol.

  • harley07
    harley07 Member Posts: 316
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    My 2 cents…Given the discordance between the stage and Onco score is there any possibility the Onco score could be in error or a mixup occurred at the lab? Is there any concern that during your meeting with the MO that he did not have the pathology report in front of him? Did he explain the discordance?

    I would be concerned that given your cousin’s overall health that perhaps the doctor is proceeding with the standard of care and not factoring in her overall health.

    I think it’s wonderful that you are helping her. Best wishes.

  • meow13
    meow13 Member Posts: 1,363
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    Well definitely worth a call to oncodx.

  • windingshores
    windingshores Member Posts: 160
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    @harley07 I thought I responded but it's not here so I must not have. The MD did not have the pathology report, during the appointment, which I found shocking. He did have the Oncotype (my cousin had already called the company). I requested a printout of the pathology report, and it turns out the tumor is not grade 1 at all- grade 2 with a "3' for tubular differentiation. So our whole discussion was misguided.

    ER was 8 and no note on pathology about PR. No scale for ER eighter. Oncotype had her at 7.5 out of 12 as I remember. I read that 8 on the pathology is high. Agreed? Mine was given as a percentage (95%) so I don't know how to interpret that "8."

    She is in touch with Dana Farber and also called her doc to ask about a less severe regimen. We'll see if there is one that is gentler that could still give her some measure of safety. Thanks all!