58 y/o, Oncotype Score of 20, No Chemo

Blessed58
Blessed58 Member Posts: 11
edited November 2014 in Stage I Breast Cancer

Diagnosed in December 2012, Stage 1, Grade 2, no lymp node involvement.  Only taking Tamoxifen and having radiation.  Anyone with same Oncotype DX score?

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Comments

  • crking71
    crking71 Member Posts: 40
    edited March 2012

    Hi Blessed58, we are practically in the same boat, except I'm 40 years old.  My oncotype score was 21, but I also opted out of chemo.  I'm halfway done with my radiation, and I plan to get a hysterectomy in May so I can take Arimidex.

    Nice to hear from other people like me!  Good luck and best wishes!

  • Rose12
    Rose12 Member Posts: 95
    edited March 2012

    Hello,

    My score belive it or not was 61, due to grade 3 and genetics of the tumor. I was a bit in shock to say the least. I am going to chemo Dr. tommorrow to see what he has in store for me. I initally was only going to get radiation according the doctor, but it all changed once the score came back. I was praying I wouldn't have to have chemo but its not in the cards for me. I have to accept each step as it comes. I never know what is going to happen is the conclusion I am coming to. Everything changes. Years ago the doctors would not suggest chemo for a small tumor. But now it is all changing. I look at as a extra insurance policy for myself for the future. I hope it works.Laughing I have only seen one or two other people with a high score?

  • Hopeful99
    Hopeful99 Member Posts: 8
    edited March 2012

    I opted out of chemo, with even a little bit of cancer in my lymph node (1) with micrometatsis...oncotype was 10 --my age is 47 and I am premenopausal.

  • Hopeful99
    Hopeful99 Member Posts: 8
    edited March 2012

    I opted out of chemo, with even a little bit of cancer in my lymph node (1) with micrometatsis...oncotype was 10 --my age is 47 and I am premenopausal.

  • Carrye
    Carrye Member Posts: 43
    edited March 2012

    Research is inconclusive on value of chemo for node neg hormone pos hers neg with ontotype scores in intermediate range which is 18 to low 30's. Clinical trial dsta pending.



    My score was 15; my oncologist who is head of a major cancer center said risks outweighed benefits in my case.



    Your score puts you on boderline between low risk and intermediate. Tough choice to make!

  • Shirlee
    Shirlee Member Posts: 1
    edited April 2012

    I was diagnoised last December as well with stage 11 breast cancer, grade 2, no lodes involved, ER+/PR+, HER2- and had the Oncotype test done.  My score was 19 and I decided with the help of my doctor to go straight to radiation and slip the chemo.  I have 5 more radiation treatments and then will start the Arimdex medication.  I sometimes worry if I made the right decision but I have to go forward now.  I dreaded taking chemo, was scared of the effects of such a strong drug at my age of 64.  I will do my best to keep healthy, have all my check ups and then leave it in God's hands from there. I understand how you feel and hope my note has helped a little.  Good Luck, Shirlee

  • pj12
    pj12 Member Posts: 25,402
    edited April 2012

    My onco score was 28 which was higher than I wished. But three doctors said no chemo and I guess I was glad? Certainly age was a factor, 62 at diagnosis. And 99% ER + so all my eggs are in the anti hormonal basket. Three years out now and doing well.



    Good luck!

  • GeorgiaMom
    GeorgiaMom Member Posts: 66
    edited April 2012

    I'm 47. Diagnosed with IDC stage 1, with no node involvement. My Oncatype score was 20 and my onc recommended chemo. I'm halfway done with my four rounds. Deciding factor was my age. I have a 13 year old and 11 year old daughter and I felt like I had to do everything possible to prevent recurrence. Such a personal decision - the main thing is to make your decision and go with it without looking back! Good luck to you!

  • Blessed58
    Blessed58 Member Posts: 11
    edited April 2012

    Good luck to you also.  I'm almost done with my radiation as well.  7 more to go after today.  Did you experience any burns or blisters?  If so, did you use any hydrocortisone cream?  My skin/breast is getting darker, no pain, but itchy.

  • Blessed58
    Blessed58 Member Posts: 11
    edited April 2012

    Very encouraging to read that you are 3 years out and with no chemo and doing well.

  • scaredycatwoman
    scaredycatwoman Member Posts: 77
    edited April 2012

    Hi  Can you explain to me how you get your oncotype score?  Thanks

  • Hipline
    Hipline Member Posts: 195
    edited April 2012

    The Onco score comes from a test that has to be ordered by your doctor. my score was 16 and I did not do chemo. I am on Tamx and 15 months into it. So far so good, fingers crossed.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2012

    PJ 123 That is great to hear!

    I was a 22 with one positive node. This was way back in "09 when oncotype was really just barely being used on node pos.

    My oncologist really felt positive node, over 20 should get chemo, but I opted out.

    Now it's a more common choice in that situation.

    Florida, I am sorry that the score turned out to be different than you were hoping. I guess the good side of it is, chemo is effective on higher scores.

  • pj12
    pj12 Member Posts: 25,402
    edited April 2012

    I should have added that even though my oncotype score was 28 the report very clearly said I would not benefit from chemotherapy. As my doctor explained it to me, the mitosis rate was very low and chemo does not work well on sluggishly dividing cells. So the "number" is not the be all - end all. There is still a lot of nuancing going on and you have to listen to your docotors' advice.

  • jsolie
    jsolie Member Posts: 5
    edited April 2012

    I had lumpectomy 3/10/12.  I am 57 years old.  I just had total hysterectomy with ovaries removed as well.  My Oncogene DX test is 20. I am trying to decide if I should do chemo or not.  I have had years of food allergies, allergeries and a nonspecific autoimmune disorder.  I am very scared.  Oncologist says chemo would be agressive move.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2012

    I always wonder if the % of mets may drop for specific RS. For example is a 22 still 14%, or will new research say it's actually 12 or 10%

    We can hope.

  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2012

    scaredy..in my case my ONC ordered the Oncotype test. I have Stage 2(micromet in SN) Grade l BC. Since it was only a micromet my ONC was undecided about the treatment plan for me so she ordered the Oncotype test. It is very pricey but we were blessed our ins co paid for it. Genomic Labs does testing on the biology of your particular cancer. No family history, etc., is factored in. I think it is 21 different tests. They then calculate a "score" based on the results of those tests...size of the tumor, type, etc. My ONC said for years women have been overtreated so this test has given them a tool to help determine the best treatment. I am so thankful for that test. My score came back 11. Because of that score I had RADS instead of chemo...33 treatments but at least not chemo. The only problem with the test for ONC is when your score comes back in the intermediate range; then the dr has to make the call which treatment is best. Some ONC dont use the test but the vast majority do.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited April 2012

    Just got a copy of my results today.  I scored a 27, recurrance rate of 18%  I met with my surgeon who thought I will probably need chemo  Had my lumpectomy 3/12/12, Stage 1, two tumors, 1.5 cm and .5 cm. I thought for sure would just need rads.  I meet with my MO on Monday.  I am very nervous about the whole chemo thing.  

  • susanes
    susanes Member Posts: 22
    edited April 2012

    Pj123, how does your doctor know the mitosis rate for your cancer? I have a copy of my pathology report and also oncotype dx, but I don't see anything about mitosis rate. My oncotype was 15, so no chemo. I started Femara a week ago and OK so far!

  • pj12
    pj12 Member Posts: 25,402
    edited April 2012

    Susanes,



    I had to look back to find what form it was printed on. On my first post op visit with my surgeon he gave me a copy of his operative report and the final surgical pathology report. On page 1 of 4 toward the bottom the Nottingham Histologic Grade is listed. There are three parts; tubule formation, nuclear grade and mitosis. The combination of these three scores determines the "grade" of your cancer. Mitosis indicates cell growth which in my case was 1/3, in other words sluggish. Chemotherapy works best on actively dividing cells, I was told.



    Pam

  • Blessed58
    Blessed58 Member Posts: 11
    edited May 2012

    Encouraging news.  Finished radiation on April 16 and am healing up nicely.  Just experiencing some itching.

  • Medwick711
    Medwick711 Member Posts: 14
    edited July 2012

    I am 53 years old i have stage 1 grade 2 . Had a lumpectomy and 3 lymph nodes removed. Nodes were negative as were my margins. My estrogen and progesterine receptors are at 99%. I am her 2 negative. How could my oncotype test score be @ 22 . I am very confused. Has anyone with these exact numbers had chemo? I donot know wheather to do it or not. Any feedback would be great

  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2012

    Medwick711, If you look at my stats you would think I would be low as well, but I had a 24 a bit higher than yours. I don't know what else to say than it's a toss up if you ask me. As far as chemo it was totally let up to me the decision. I figured I would give it a try, and if really hard stop.

  • Mini1
    Mini1 Member Posts: 1,836
    edited July 2012

    I find it interesting that so many of us have similar stats yet have been advised differently or left alone to make a dicision. In my case, my doc said the benifits would not be worth the risks, so I am doing only radiation. Other health issues now have me questioning whether or not the 5 years of meds are worth the risk. I will have to have that discussion with him next week. I really think much of our treatments depend on the views of the doctors and that is not always good if they are not open to other schools of thought, do not keep up on new techniques, or have an agenda they are pushing.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Mini1:  That's why we have these boards.  So we don't have to take what the doctor says as the only option

  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2012

    mini1 I ended up opting out of chemo after my first dose because the SE's were really extreme. My Onc. said no more, but that was my new one fired the first. My 2nd said he would never have even suggested chemo in the first place.

  • Lee7
    Lee7 Member Posts: 657
    edited July 2012

    kira1234,

    I'm sending you a PM.

  • Mini1
    Mini1 Member Posts: 1,836
    edited July 2012

    kjiberty - You are right about that. I've learned a lot here. We must be our own advocates and not just blindly follow the flock. There are so many areas that we need to be educated about. A very good book to read about how different doctors approach things and the things they do (not always good) is: The Harm We Do. It is written by Dr. Otis Webb Brawley. He is the Chief Medical Officer of the American Cancer Society and a VP of something there. It was very eye opening. If I lived in Atlanta, he would be my Onco doc, for sure.

  • Lee7
    Lee7 Member Posts: 657
    edited July 2012

    Mini1,

    I just looked Dr. Brawley up and found quite a few articles and video interviews on his book. The book sounds very interesting.   It is also very scary to think that patients can be over treated if they have good insurance, and undertreated when they have none. 

    The first place I went to expected me to pay upfront the 20% my insurance was not going to cover for chemo. They did that for the surgeries too.

  • Mini1
    Mini1 Member Posts: 1,836
    edited July 2012

    Lee7 - It was a real eye opener for me. What's good about his book is that he is not anti-conventional medicine or only an all holistic proponant. He is an active, knowledgable oncologist that knows his stuff. And if you think navigating your way through BC is hard, be glad you're not a man with prostate cancer. It's even more disconcerting.

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