What Would You Think My Oncotype DX Score Will Be?

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letsgogolf
letsgogolf Member Posts: 263
edited April 2017 in Just Diagnosed

Recently learned that I had Invasive Ductal Carcinoma with Lobular Features (Mixed Type). I am 60 years old. Lumpectomy was done 3 weeks ago from upper, outer quadrant. Size was 14mm 13mm x 12mm. Spiculated, stage 1B, grade 1 (glandular/tubular differentiation = 2, nuclear pleoorphism = 2, mitotic rate = 1). Estrogen was 100%, progesterone was 99.89%. Biopsy Ki67 was 3.3% and surgery Ki67 was 10.59%. Her2 was negative with a score of 0. Sentinel node had 2 micromets measuring .7mm and .3mm. 7 additional nodes were negative. Team suggested Whole Breast Radiation plus Regional Node Radiation x 36 plus Arimidex for at least 5 years. I have requested the Oncotype DX test. Awaiting results. Anybody have a similar diagnosis and if so, what was your Oncotype DX score? Oncologist says definitely no chemo if score less than 12. Surgeon and Oncologist seem certain that no further nodes were involved. I am uneasy about the prospect of having chemo and also about not having chemo.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2017

    Hi Letsgogolf-

    Welcome to BCO! We're sorry you find yourself here, but we hope you find the support and advice you need. We suggest reading through our chemo forum, lots of great info there about oncotypes and how members decided to proceed or not: https://community.breastcancer.org/forum/69.

    Hope this helps!

    The Mods

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

    I am betting it is a low oncodx. Micro mets are a little concerning but judging by your estrogen and progesterone hormone therapy should be effective. I would not do anymore than 5 years Arimidex no evidence to prove it is helpful after 5 years. Oncodx of 12 is pretty low for a cutoff.

  • obsolete
    obsolete Member Posts: 466
    edited March 2017

    Ms Golf, I'm so very sorry that you find a need to join our wonderful sisterhood. For a steep learning curve, you sound like you are already very well-informed and in command of self-advocation in such a short period of time within the BC process. Good for you.... you will do very well, while holding such an upbeat calm attitude.

    Although I don't share your BC subtype & molecular presentation, however one of my friends did have a similar dx, and her Oncotype score was 12 with 2 warm nodes (micromets). Chemo was not recommended.

    I also recall having read studies online suggesting that a high ER/PR% tends to score in the lower quartile for Oncotype Dx. Your HER2 could possibly be the tie-breaker in your case. Please continue to think positive. Best wishes and many hugs to you!

  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2017

    My Oncotype score was 11. I had IDC, Stage 1b, Grade 1. I had a lumpectomy too, 33 Rads treatments and took Tamoxifen for 4 years. First year was on Arimidex but ONC switched me because I had borderline osteoporosis and Arimidex attacks the bones. I was 5 years out last August.

    I also had a micromet in my SN. My BS thought that would get me chemo but my ONC instead ordered the Oncotype test. Since my score was low I dodged chemo. Hope you do too.

    Diane

  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited March 2017

    I have similar dx except that mine is Grade 3. I am almost done with neoajuvant chemo and I won't regret my decision of doing it. A/C is tough on me but somehow I can manage working full-time all the way through. I am also curious what my oncotype would be.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited March 2017

    I just realized that I had some responses when I received a message from the moderators. Obviously, I am a newbie. A hearty thank you to everyone who took the time to reply. I am so impressed with the wonderful ladies on this forum. It is so nice to see strangers who take the time to make others feel a bit better about their situation. I must admit that my anxiety is beginning to get the best of me. Lots of sleepless nights while I await my Oncotype score. I know that at the minimum I will have hormone therapy plus radiation which will include my regional nodes. I wonder about the possibility of lung and heart damage from the expanded radiation.

    Also, have any of you used the online predictor tools such as Predict 2.0? I wonder how those scores compare to the Oncotype test?

  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited March 2017

    I'm a newbie too. I can relate to everything you're feeling. I'm doing a lot of crying. The waiting for test results in my opinion is the worst. I don't have any advice other than to acknowledge your feelings. If you need to cry then cry. We're all here for you. I'm on information overload. I was told by three radiologists and my MO that i was highly unlikely I would need chemo. I can deal with radiation and hormone therapy. Chemo scares me! My Mammaprint came back high risk and so it's now back to the MO. One thing we need to remember is that these tests are one piece of our treatment puzzle. Everyone's cancer is unique to them with specific treatment options. I sound much braver than I feel. Blessings

  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited March 2017

    One more thing. My radiologist assured me that they take every precaution to protect your heart and lungs. From my own experience try to stick to only reputable websites for your information.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited March 2017

    Hi there

    so sorry you find yourself here. Let me first say that I appreciate that you don't want chemo- and the truth is, you get to choose, no matter what. My oncotype was in the gray area and ultimately I made the chemo decision (I certainly got feedback from my surgeon and MO, but I made the decision).

    On the radiation, I had a colleague who had bc on her left side and was concerned about damage to heart and lungs-- I think they did her radiation with her laying face down--so you might look into that--- radiation is very targeted--- which is not to say it is perfect, but they can really focus on the area that they are concerned with. The technology has come a long way.

    Lots of people with scores over 12 opted out of chemo-wait to see what your score is and then check back--I bet you will get alot of feedback.


  • Platinum3
    Platinum3 Member Posts: 1
    edited March 2017

    hi,


    I'm also a newbie and just had an oncotype done. My BC results were 1cm tumour, stage 1, grade 2, ER+/PR+, lymph nodes 0. My oncotype came back at 10, which meant no chemo, and believe me I was so relieved. Then I was offered to join a study where I wouldn't do radiation, only hormone therapy. It was a study to see if women over age 55 with my diagnosis and results are actually helped by radiation. I opted for the radiation because I didn't want to regret not doing it and side effects are rare. I also just started on Arimidex for at least the next 5 years. So I would be hopeful that your number will be low. BTW, an oncotyope number between 0-18 usually indicates no chemo. At least here in Canada ( but our testing is done in California)

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2017

    Platinum-

    Thanks for chiming in with your experiences! Good luck with your rads treatment, we hope all goes well!

    The Mods

  • jdot
    jdot Member Posts: 25
    edited March 2017

    letsgogolf... I empathize with you so very much. I was stage IIA, ER/PR positive and had a similar surgery a little over a year ago, lumpectomy with clear margins, 5 sentinel nodes removed and all negative. Before surgery my tumor was estimated at 1 cm, but the pathology report revealed 3.5 cm. My RO was the one to give me this news and insisted I go through chemo. I absolutely freaked out. Receiving this news was like being told I have cancer all over again. I did not in any way want to go through chemo. I moved up my appointment with my MO who said they'd run an Oncotype test and we'd proceed based on those results. I spent the next two weeks in misery, waiting and waiting for that number. Finally I got the call. I got a 12 and chemo was off the table. Because I had a larger tumor, my RO expected it to be aggressive, but it was not. I must add that this tumor was discovered in my very first mammogram last January at age of 49.

    For radiation I had several options and went with the Canadian Protocol of 16 whole breast treatments with no boost treatments. Because I was perimenopausal I was not a candidate for Tamoxifen. I was fearful of the side effects of Tamoxifen, so opted to have my ovaries removed and go on Arimidex. I've now been on that drug for 6 months and I'm doing quite well on it.

    I am crying with you, letsgogolf and butterfly1234. The early days are so hard and so emotional. There are so many decisions to make and the information is overwhelming and often contradicting. Good luck to you both.

    Platinum3, your study offer is very interesting to me. I sometimes wonder if radiation was actually worth it for me. But when it came down to it, study or not, everything was a choice, and my BS very highly recommended radiation and so I went through with it. Congrats on your Oncotype score of 10.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited March 2017

    I have read several studies indicating that chemotherapy is not useful in Luminal A breast cancers. One study did show that it possibly delays recurrences. Quite interesting. Maybe the Oncotype DX sorts that out. As I understand it, Luminal A is a relatively common subtype of breast cancer, and is defined by high expression of hormone receptors - estrogen receptor (ER) and progesterone receptor (PR), a low expression of the cell-growth marker Ki67 and the oncoprotein HER2. One study suggested that even radiation may not be necessary for many women over 60 with this type of cancer.

  • Seedsally
    Seedsally Member Posts: 260
    edited April 2017

    Hello all. Just decided to post my experience. My oncotype score is 24. My MO said no chemo unless I insisted. She was worried the chemo side effects would be more risky for me than the risks of recurrence. I did have 2 lymph nodes that had precancerous cells in them on the non cancerous side. See my description below. But I was 65 when diagnosed, had BMX last Apriland a complete hysterectomy in 1997. I am on anastrozole for 10 years. Due to my age I went directly to the BMX because of large tumor in right and ADH in left and I worried that a lumpectomy with radiation for the cancer might be ok for now but with increasing age and other health problems if a recurrence happened later would I be able to go through surgery and treatment. I am satisfied with my choice. I know I may still get a recurrence but believe I have done the best I know to prevent it. I am not having too many problems with the Anastrozole after 11 months and hope it stays that way

  • letsgogolf
    letsgogolf Member Posts: 263
    edited April 2017

    Finally met with my oncologist today and received my Oncotype DX score. I am beyond relieved to have a score of 3. I did not expect it to be that low and I am so thankful. I begin radiation tomorrow. My 5 year risk of recurrence is 4 with tam alone and is 3 points higher (7) if I add chemo. In my case it seems that chemo would do more harm than good. I am not sure how the radiation figures into that score. I will have 28 whole breast with regional node treatments and 8 tumor bed boosts.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited April 2017

    I just learned yesterday that even though I am having regional node radiation they are not doing the internal mammary nodes. I am a little concerned. I had upper outer quadrant IDC with micrometastases to the sentinel node. Are any of you having node radiation and if so, are they hitting your internal mammary nodes? Also I have lots of little red bumps and a rash appearance in the supraclavicular area after just 3 treatments. Yikes! I have 33 more to go!

  • labelle
    labelle Member Posts: 721
    edited April 2017

    My diagnosis was similar but no one even suggested hitting internal mammary nodes with radiation. My surgical pathology report did show the surgeon took one internal mammary node during my lumpectomy w SNB but it was negative. Not sure how common it is to radiate the internal mammary nodes, but it was definitely not part of my treatment plan.

    also skipped the supraclavicular area, mostly because I wanted to have rads in the prone position to spare my heart and lungs (they can't do the supraclavicular area in the prone position). While the radiologist was originally going to do the supraclavicular area, he said it really wouldn't make much difference if we skipped it, if I preferred the prone position for rads. Wimpy, tubular cancer and all that, despite the positive node.

  • jojo9999
    jojo9999 Member Posts: 202
    edited April 2017

    me too - I had micromets in one axillary node. Had radiation to underarms and clavical but not internal mammory - was told that they are too difficult to zap without hitting other areas.

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