ONCOTYPE 35 - 66 YRS OLD

Hi all. This is such a great site. I am 66 years old and was DX w/ IDC 3/09. Lumpectomy and SNB 4/09. Rads (33) completed mid-July. Met with medical onc., had Oncotype test which came back with a score of 35. I did not want chemo and she agreed to Arimidex for 5 yrs but did feel chemo was my best choice. I have moved to FL and med. onc. here wants me to start chemo immediately. BTW my gyn. dr. and mammo in 10/08 missed the tumor (2.1 cm when operated on).  Stage IIa. Has anyone else had similar issues? I do feel chemo is necessary now but am stunned by this change.

Comments

  • pj12
    pj12 Member Posts: 25,402
    edited October 2009

    Hi Bienegn,

    Your ID is hard to type!  My fingers did not  want to do that combination. :)

    Are you Stage II based on size alone or did you have lymph node involvement?  I am 62 with an oncotype score of 26.  I was told by my 3 doctors not to consider chemo.  Makes me nervous but  glad to pass up the experience.  This is all so complicated, hard to know what is the right thing to do.   Is chemo after rads okay?  Usually it is the other way around.  

    I guess in the end we have to trust our doctors, do our research and say a little prayer for guidance.

    Welcome to Florida.  Sorry we are making it so hot for you!  It does cool off eventually. :)

    Pam 

  • birenegn
    birenegn Member Posts: 22
    edited October 2009

    Hi Pam. Thank you. I am Stage II because of the size and "a" because there is no lymphe node invovlment. Also ER+/PR+ HER2-. I understand that a score of 35 is high risk. Trying to find someone else. Glad you were able to avoid the chemo.

     We've been spending 7 months a year here since 2000 so decided to make it permanent. Got tired of trying to remember where everything is -- LOL.

     I do have alot more questions for the doctor. I was so stunned last week I couldn't think straight.

    Thanks for the response. Nancy

  • knowledgeforpower
    knowledgeforpower Member Posts: 184
    edited October 2009

    You might want to check the Chemotherapy discussion board.  There is an OncoDX and an Onctopye Roll call post where women report their scores and treatments.  I am 58, my oncotype was 26 and I did four rounds of adriamycin/cytoxan.  You could also post your question there.

    Good luck with your decision.

  • birenegn
    birenegn Member Posts: 22
    edited October 2009

    Thanks so much. I do have trouble navigating this site. It might be easier if it was at least alphabetical.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited October 2009

    Your situation is unusual, and your own discussion and choice with your personal oncologists is absolutely essential.

    One way to pose your situation might be: "is it ever too late to receive chemotherapy in early breast cancer"? This is known as adjuvant chemotherapy to us. You mention a higher Oncotype Dx score which may suggest a higher likelihood of recurrence, perhaps based on the Ki-67 (cell proliferation index score) component. Your oncologists' probably reviewed actual numbers with you, and reminded you too that breast cancer recurrence scores are still a work in progress in interpretation and prognosis.The big question every patient and oncologist faces, especially in ER+/PR+ breast cancers, is "is chemotherapy advisable"?

    When the benefit is decided upon as yes, adjuvant chemotherapy is usually given in a timely manner. There are a few abstracts which talk about outcome when given as late as 6 months out which I cite below. Apparently the risk of recurrence increases from time of diagnosis to receipt of chemotherapy in most studies. But you are a unique number of 1, which many of us have come to respect as solely empowering in our choices along this journey. Studies show us numbers, but our own outcome may lie outside of the average. 

    Your tumor is ER+/PR+/HER-, which is typically ideal for anti breast cancer hormonal treatments. You've been taking Arimidex all these months, a very potent estrogen-maker inhibitor. These therapies help many. You don't say how strongly your tumor cells reflected ER and PR positivity. The presence of progesterone, which is made further down the road from estrogen, suggests that your body and tumor had a good amount of estrogen exposure and reaction, hence stimulated at least some progesterone receptors which Arimidex suppression will effect by minimizing total body estrogen and progesterone production. Aromatase inhibitors like Arimidex do differ in nature from chemotherapy in that chemotherapy causes death of the cancer cell (called apoptosis), whereas hormonal therapy holds the cell from division or in other manners of abeyance. Researchers are hoping to find a way to cause apoptosis with newer modified hormonals against breast cancer, an effect which many are hoping will also minimize breast cancer stem cell resurgence or growth.

    One way to think about your question is the risk/benefit of chemo and buying you time. Will doing chemotherapy now, later than typical but still doing it, ultimately help buy you time with your journey with breast cancer? Time for currently in trial and newer therapies such as small molecule biologic/ gene therapy, angiogenesis (blood vessel forming) therapies, immunologic therapy (vaccines etc), new hormonal therapies and combinations, and for ER+ patients, time for finding a solution on hormone resistance development in our ER+ states.I doubt you'll be able to find a statistical answer to this question, but surely it is intuitive there should be a positive theoretical answer. Nevertheless, chemotherapy must be reviewed very carefully with your personal doctors in terms of it's risks vs benefit.

    I can only offer these words, not an answer to your dilemma.Since your current oncologist raised the question, you need to make a decision. Seeking a second opinion from a comprehensive breast center is often very helpful, if there is one near you who might render an opinion in a timely manner.

    I wish you the very best at a hard decision time, and hope too that you're tolerating the Arimidex well.

    Tender

    Delay of adjuvant chemotherapy initiation following breast cancer surgery among elderly women

     http://www.springerlink.com/content/m168pr723l57l613/

     Effect of timing of initiation of adjuvant chemotherapy on disease-free survival in breast cancer.

    http://www.ncbi.nlm.nih.gov/pubmed/6897369?dopt=Abstract

     Does Timing of Adjuvant Chemotherapy for Early Breast Cancer Influence Survival?

    http://jco.ascopubs.org/cgi/content/full/21/20/3792

     2009 Breast Cancer Estimate Numbers

    "The American Cancer Society estimates that there will be 192,370 patients diagnosed with invasive breast cancer in the United States in 2009. Another 62,280 will be diagnosed with non-invasive breast cancer because it’s in its earliest stages"

  • birenegn
    birenegn Member Posts: 22
    edited October 2009

    Thank you so much for your very informative thread and also the web sites. I now have more information to work with. I see the med onc again Thurs and will bring a list of questions. I'll report back at the end of the week.

  • BarbF
    BarbF Member Posts: 8
    edited October 2009

    I am 59; soon to be 60!  I also had a missed tumor on a mamm in 2004 and ended up with a 6 cm, stage IIIb in 2007.  I DID have Chemotherapy; ACT and radiation.  I now have mets in about 8 bones.  It's totally up to you about your treatment, but you probably have less chance of mets with Chemotherapy.  I would like to hear how it goes for you and I wish you the best.

    Barb in Oregon

  • mgm42
    mgm42 Member Posts: 48
    edited October 2009

    Hi.  I'm 67 and had an oncotype score of 36, which translates to a 24% chance of recurrence.  My oncologist strongly recommended chemo, followed by Arimidex.  That would cut my recurrence percentage to 14.  That 10% is a significant number when talking about avoiding a recurrence.   I did the chemo.  4 infusions of taxotere and cytoxan.  Because I had a lumpectomy, I had 33 radiation treatments and two weeks later started on Arimidex.  Unfortunately, after 8 months on Arimidex, I started to develop some very debilitating side effects.  So, we switched to Aromasin.  Side effects were even worse.  Then on to Femara - side effects just as bad as on Aromasin.  I learned that my system cannot tolerate AI's.  Consequently, I'm so glad that I had the chemo because I never anticipated not being able to tolerate the AI's.  I just wanted to share my experience with you. Good luck in whatever decision/s you make.  Marilynbn

  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2009

    birenegn ~  How about getting a third opinion?  35 sounds like a rather high Oncotype-DX score to have skipped chemo, and yet the only research on how long we can wait and still be assured chemo will be effective says it's 3 mos.  So, it may not be worth the risks at this point.

    http://www.ncbi.nlm.nih.gov/pubmed/17015884

    If I was in your situation, I would probably go to an NCI-designated cancer center for their opinion.  My rationale for doing that is, because they see more cancer patients than other facilities, they probably will have experience with situations similar to yours, which is an unusual one:

    http://www.ncbi.nlm.nih.gov/pubmed/17015884

    Also, if you do end up doing chemo, I'd try to avoid Adriamycin, which is known to carry have a higher risk of heart damage, and ask about possibly having Taxotere & Cytoxin (TC) as an option.  There are many of us here who can elaborate more on that point if chemo turns out to be in your treatment plan afterall. 

    So sorry that you've been blindsided by this news, but best to get to the bottom of it and make an informed decision, and hopefully we  can help you figure it out  ~   Deanna 

  • lbrewer
    lbrewer Member Posts: 766
    edited October 2009

    Ypu don't say where in Fl you are but there are several excellent cancer centers here.  I'm in Orlando and chose MD Anderson but there more.  I'm sure women here would be happy to point you to one.

  • hmm
    hmm Member Posts: 2,183
    edited October 2009

    I am also in Orlando and go to MD Anderson. If it is within reasonable driving distance for you it may be worth going there to see what they recommend.Best wishes to you with whatever you decide.

  • birenegn
    birenegn Member Posts: 22
    edited October 2009

    Thanks for your reply. I'm still up in the air as my husband is totally against chemo. We meet with the doctor this Thursday 10/22. So are you not taking any medication?

  • birenegn
    birenegn Member Posts: 22
    edited October 2009

    Thanks so much for your response. I did look at the sites you recommended and learned something new. Thank yo ufor the research. I would not have known how to find these articles.

     I am in Naples, FL and comfortable with the medical oncologist at this point but thinking I maybe should look further. I can see there is no time to be wasted so I'd better make a decision quick.

    Thanks again.

  • Fritzi
    Fritzi Member Posts: 2
    edited November 2009

    Hi.  I'm glad I found all of you here in one place.  I'm 63, had a bilateral mast on September 16, have an oncotype of 32, no lymph nodes, hormone receptor positive, 1.6 cm stage 1 grade 3.  I've been trying to decide on chemo (cytoxan and taxotere) and reluctantly I agreed to it, and will begin next week.  I'm really scared, especially of long term side effects like leukemia and bladder cancer, and don't really want to lose my hair since without breasts I already look a lot like my older brother. But reading the post by the woman who was unable to take the AI's convinced me to do the chemo, since that was one possibility that never occurred to me.  By the way, Mayo Clinic is finishing up a clinical trial  using grape seed extract as an AI, and I intend to hound my oncologist about it. 

    Fritzi in South Carolina   

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