Low Oncotype score- Will Chemo give extra insurance?

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

    in low oncotype at the edge of the margin of error, some do worse with chemo.....

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    I wish I could insert a utube of a talk that the head of Memorial Sloan Kettering gave.

    How do we define "overtreatment"?  that is the question.

    His philosophy was that treating 100% to save 3% is worth it.  As a public health measure

    multiply that 3% by hundreds of thousands and you are saving a lot of lives.  

    I think saving one life is worth it.  If it works.  I realize the bad effects have to be weighed against the good but I don't think the cost should be weighed against the good.

    Every drug, every treatment has a physical price to pay.  Unfortunately.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    I thought that 11 meant that out of 100 people 11 will have recurrences.  Not sure how that converts to 8.  Maybe they do mean with tamoxifin?  

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    His statement is sooo misleading!  Our life expectancy as a country is not as high as others but that is not the statistic we should look at.  We should look at life expectancy for people with various diseases!

    Our life expectancy is the best in the world for cancer.  That is the true measure.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    vora-statistics are confusing.  it's my guess that the patients who had chemo and tamoxifin were at higher risk, that's why they had chemo.  Perhaps their tumors were larger?  Their Grades higher?

    It doesn't mean that the chemo is what did the damage.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2012

    Simply put, overtreatment is defined as unnecessary invasive treatment that DOES NOT show any demonstrable benefit to the patient and may in fact do harm.



    Timbuktu... What you are confusing is the cost of treatment compared to the number of patients needed to treat to see a measurable effect. These are TWO different topics. One measures a treatment against a person while the other measures a treatment for a group.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2012

    Yes. Timbuktu. Our country has excellent mortality rates when it comes to cancer. However, despite paying more for our care than other industrialized countries, our overall mortality rates are lower. Much lower than our peer countries. Saying we survive cancer better than any other country is a hollow statement. Our overall mortality rates should be the best in the world. Could overtreatment account for some of that difference?

  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2012

    With all due respect to the posters I really love, blanket statements like "With a score of 11, with ER/PR+, a doctor who would give you chemo without any other risk factors would be doing his job poorly." can be potentially dangerous.

    Age and tumor grade are huge prognostic factors.  University of Chicago, one of the leading SPORES research hubs on breast cancer reported with my 12 Oncotype that given my age (39) and grade (3), they simply didn't know the correct protocol.  So much more research is needed.  Women diagnosed under 40 are sometimes referred to as having a different disease.

    My best advice is to get three, not two consultations/opinions.  You have one shot at getting the most information you can up front.  In my case, I got "yes", "no" and "maybe".  I went with the doctor who was as passionate about my treatment as I was about getting back to my life.

    Your doctor can provide you statistical analysis on the addition of chemo.  Ask your doctor to provide additional information on studies about age as a separate prognostic factor if you are in the 40 yrs old range or under.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    ltothe- that is the truth.  They don't "know".  I went to several drs for different opinions and I went with the one who said she didn't "know".  The others were quite dogmatic and I don't trust that kind of thinking.  Somehow we have to accept the uncertainty.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    I don't know how to insert links but I just looked up "world breast cancer survival rates" and the US DOES have the best survival rate in the world.  83.9% for five year survival.  Survival is tied to expenditure so I would assume that the emphasis on saving money will be at the expense of lives.   Dying is cheap.  Quick treatment is one of the variables, which will most likely go out the window with Obamacare.  It was a BBC article.


  • pupmom
    pupmom Member Posts: 5,068
    edited December 2012

    Wow, I have gotten some extremely expensive treatment, the works in fact, yet have not had chemo due to my low Oncotype score. I see my surgeon every 6 months, at which time I have either a diagnositic mammo on my bc side, or a diagnostic and regular mammo on my good side. I see my MO every 3 months. At those times she takes blood for numerous things, including tumor markers, and I get an infusion of Zometa. Once a year I get a body CT. I would have gotten chemo in a New York minute if the 3 MOs I talked with had thought it would benefit me. This is despite having 2 nodes with micromets. I absolutely do NOT feel like cost was a consideration. Our insurance company has been awesome, paying the vast majority of all bills. I have had reconstruction for a lumpectomy, with resizing and lifting of the other breast. Since this is the most recent bill, it's in my memory. We were charged $25.00 for the surgery. I see zero evidence of a conspiracy to deny people with cancer treatment to cut costs. Of course I'm just one example but my experience has been I get whatever I need, no problem.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    I'm going to have to ask a friend who is an epidemiologist.

    It's so complicated.  I know chinese have a lower incidence but when they come here it goes up.

    But why?  Diet?  Or something else.

    There is obviously a genetic component.  An environmental component.

    I've heard that the further away from the equator the higher the incidence of both BC and Multiple Sclerosis because of the lack of vitamin D.  But according to the map there is still plenty of incidence in warm climates.

    My onco nurse at Sloan was from St. Vincent in the carribbean.  She said that there is a lot of breast cancer there.  They are out in the sun all day and eat fresh fruits and vegetables and fish from the sea.  But still, a lot of BC.  She said the difference is that there is no care.  They don't go to the dr, they don't know they have it until its too late.  Many cases are not reported and most go untreated.


  • Yawls
    Yawls Member Posts: 39
    edited December 2012

    I have been an avid lurker since early October. I think just to unsure and overwhelmed to weigh in on any thing. This topic speaks to exactly where I am at currently. I have a second appointment with my mo (it still sounds so weird to say my mo) on Tuesday when my oncotype results will be discussed. I went in to my first post surgery appointment 99% sure that I was going to refuse chemo if it was suggested. I was trying to keep an open mind because I am really not interested in dying from BC anytime soon. After exhaustive study on mucinous type IDC, which says early stage node free BC typically does not call for chemo, I was still willing to listen to my MOs opinion. Truthfully I was hoping he would not recommend. Well he showed me adjunct online statistics, and said that he would be much more comfortable if I followed a TC 4x course. The adjunct online did not take into consideration the mucinious type and the low proliferation numbers Ki67 8%. Mitotic grade 1. The upshot of the conversation was that MO would order oncotype. He was clear that he understood my concerns of over treatment and quality of life versus long term SEs but that he was hoping that if the oncotype results were in the inconclusive range that I would go ahead with chemo. My questions...what exactly is chemo light? Does anyone else have my same tumor situation? If so what did you decide?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2012

    Yawls... I was diagnosed with mucinous breast cancer. Have you been reading our thread devoted to mucinous BC? I will bump it up for you.

  • Yawls
    Yawls Member Posts: 39
    edited December 2012

    I have read your posts on several topics voracious reader, I have been having difficulty with the pure aspect of mucinous. I will head back to that topic. Thanks

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    CMF is called "chemo light".  It's not supposed to have the same side effects as other chemos.

    I was told it does not cause leukemia, which some other chemos do.  I did not lose my hair.

    I was not incapacitated.  I flew in and out to New York for each infusion and had a ball walking around the city.  Walked for miles.  went to museums, ate out, etc.  Then, after the infusion I'd go home and stay in bed for a few days.  I was told that it's been studied forever and it's the safest chemo in the sense that the side effects aren't bad and permanent but I get the feeling it's not the most agressive treatment for the cancer.  It isn't used in the chicago area very much anymore.

    I HOPE it's effective!!!

    BTW, I did  get strange bumps on my skin when I was in the sun, months after I was done with treatments.  The onconurse told me that the stuff stays in your body for a year!

  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2012

    I really count on VoraciousReader to help parse things for this weary brain, but wanted to say that if I understood the San Antonio reports (another thread), Dr. Wolf says the Oncotype should be part of a comprehensive evaluation, not a solitary determination separate from all prognostic factors.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2012

    Good point...LtotheK! Oncotype DX score should never be looked at in a vacuum!

  • dcsandpiper
    dcsandpiper Member Posts: 26
    edited December 2012

    Hi there



    My largest tumor (2cm), was oncotype 11. And yes we are in that fuzzy zone which is what the clinical trial is all about. However my docs are recommending chemo because I had a positive lymph and 4 lump (invasive ductal carc) in one breast and in situ dc in the other. I am also grade two. I am getting 4 cycles of TC just in case and also probably radiation. So I guess some docs are more aggressive than others. You might want a second opinion.

  • Lee7
    Lee7 Member Posts: 657
    edited December 2012

    If you read the FDA info on Cytoxan (the C in CMF, and in TC) it does have the risk of Leukemia.

    edited to add link to http://www.cancer.org/acs/groups/cid/documents/webcontent/002043-pdf.pdf where I saw this about Cytoxan .

    "Alkylating agents

    Certain types of chemo drugs called alkylating agents have been shown to increase the

    risk of AML when used to treat certain cancers like Hodgkin disease, non-Hodgkin

    lymphoma (NHL), ovarian, lung, and breast cancer.

    Alkylating agents known to cause leukemia include:

    ·Mechlorethamine, Chlorambucil, Cyclophosphamide (Cytoxan®)"

  • curveball
    curveball Member Posts: 3,040
    edited December 2012

    @Yawls, as Timbuktoo mentioned, CMF is sometimes called "chemo lite". My tumor was a similar size and grade to yours, but not of mucinous type. I'm not sure how much difference the mucinous type will make in treatment. Also, you didn't mention your age, and that can make a significant difference in what treatment you will be advised to take. I had a 1-mm micromet in one sentinel node, and scored 28 on Oncotype, so I decided in favor of chemo. My oncologist originally suggested TC to me, but after finding out here at bco that taxotere can cause permanent hair loss in some cases, I asked what my other chemo options were, and after hearing them, decided to do CMF, which for me is 6 months of daily Cytoxan pills plus weekly infusions of the methotrexate and 5-FU and down to my last five treatments. I think this is a different "recipe" (dosage and timing) of CMF than Timbuktoo is getting.

    I also have had hair thinning, not complete hair loss as is typical of many other types of chemo. As I recall, one of the three medications can cause cancer, but not leukemia, a different kind, but this happens in less than 1% of patients treated with that med.

    There is a huge thread here at bco about CMF chemo, which you may not have seen because it isn't in the chemo forum. You can check it out here.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    Lee- No kidding!  They told me no leukemia!  Honestly I have not gotten the same answers twice from two different drs.  

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2012

    Curveball... Us mucinous gals, along with our tubular sisters, have our own NCCN guidelines which is separate and distinct from traditional IDC-NOS BC treatment guidelines.

  • curveball
    curveball Member Posts: 3,040
    edited December 2012

    @voraciousreader. Thanks for the heads up. I looked at the guidelines and if I understand them correctly, for mucinous BC, chemo would only be indicated for a tumor larger than 2 cm with positive nodes.

  • neugirl
    neugirl Member Posts: 57
    edited December 2012

    wow, thanks everyone for all of this interesting information. I had another question related to the Oncotype. Well, I had extremely positive ER and PR greater than 90% on my tumor biopsy, but the Oncotype returned a less positive result. On the Oncotype, I was 7.5 positive for ER...positive scale goes from 6.5-12 and PR i was also lower. I guess I was just assuming since I was above 90% for both, my ER/PR would be higher on the oncotype. For HER2 I was very negative whereas in the biopsy i was IHC+1 (negative). 

    I guess I am wondering if anyone else had results such as these. Maybe i am reading too much into the oncotype scales? Maybe the biopsy results are the only ones that matter. But I am curious, if Oncotype is so different than the biopsy, how can we be so sure the whole test is accurate? I find it all very confusing and Im getting sick of all these test results and percentages and things... 

  • neugirl
    neugirl Member Posts: 57
    edited December 2012

    i am also wondering about the 5% of women who relapse in the low risk group after 10 years. I wonder what goes wrong for them and why they relapse? I wonder if chemo would have helped them or if there is some other negative characteristics. 

  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2012

    Though not a doctor, I would like to challenge some assumptions about tumor grade.  Part of the point of the Oncotype is there are subsets.  While it is less likely a high grade will yield a low Oncotype, and a low grade would yield a high one, I am here to tell you that in my posse of chemo gals at my clinic we all broke "the rules".  The two grade 1 patients had high Oncotype scores, and my grade 3 was low.  I believe part of the point of Oncotype is there are different subsets within the tumor grades, and they are not all alike.  If tumor grade were where it's at, there's not too much point to Oncotype, they would just tell all the 1s to forget it, and the 3s to sign up for the chemo chair.

    Also, Bevin got the same advice I did, apparently.  Studies indicate chemo is more effective for early stage patients 40 and under.  More studies are needed to understand why.

    The truth is, we are asking a lot of solid smart questions for which they simply don't have answers.  I figure if University of Chicago and one of the most famous breast cancer docs in the country (a MacArthur Fellow!!) can't give it to me straight, there's just a lot more study to be done.

    Also, found my old notes going to the oncologist the other day.  My third opinion at U Chicago told me 20% approximately of ER/PR+ tumors do not respond to hormonal treatment.  This is also why in the presence of other risk factors, chemo may be warranted.

    I'm not saying run for chemo, but there are many, many sides to this discussion, and I find age is rarely a discussion point on these boards still.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    I also wonder why, if you remove estrogen, there are still recurrences.  At least I used to wonder.

    Now I wonder if it's a lack of compliance in taking the AI's.  5 years is a long time to ache.

  • curveball
    curveball Member Posts: 3,040
    edited December 2012

    I'm just guessing, but I wonder if all the relapses that happen years after original diagnosis are really relapses. Is it even possible to tell a relapse from a new primary if the hormone & HER2 status are the same?

    Also, if normal cells become cancer cells as the result of mutations, isn't it possible that an additional mutation would turn a quiescent cancer cell that is being suppressed by hormone therapy into an aggressive cancer cell that is resitant?

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