Low Oncotype score- Will Chemo give extra insurance?

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neugirl
neugirl Member Posts: 57

waiting all week was awful but got the results first thing this morning for the oncotype. I scored 11 with 8% recurrence rate. I am not sure if this is WITH or WITHOUT tamoxifen/AI but i would like to reduce it even more if i can. in other words, i want chemo because i never want to look back and wonder if i should have done it... however, im not sure if the oncologist will let me (the nurse who called me today seemed to think he would not allow chemo)

I am considered in the low risk range which is 0-18 according to Genomic Health, but i am also the start of the TailorRX trial intermediate range (11-25) which is confusing me a bit. dont know why they start it at 11 and wonder if i am really at a higher risk!!?

i was also told that i have a grade 2 tumor which i heard works somewhat with chemo and i have a tumor just over 1 cm--- 1.2.

well anyway, i was wondering what your thoughts are or if any of you faced a similar situation! also, what i could say to my oncologist if i want the chemo?

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Comments

  • mdg
    mdg Member Posts: 3,571
    edited December 2012

    I was a 17 and grade 2 and my tumor was a similar size.  I did the chemo but I also had angiolymphatic invasion present in my tumor.  That freaked me out.  One MO said no chemo.  The other one thought I could benefit from chemo.  I had to decide so I did the chemo.  It was a hard call but I also felt like you do - I wanted to know I did everything I could.  My son was only 4 when I was diagnosed and that factored into my decision too.  Good luck! 

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2012

    I think you could find an oncologist who will give you chemo. Getting a second opinion might be a good idea. Some MOs explain things better.  I have seen women on these boards have chemo for a 2% reduction in risk. I was given percentages & told the decision was up to me.

    The reocurrence rate associated with your score assumes you do 5years of tamox.

    The chemo decision was hard for me. Good luck.

  • YramAL
    YramAL Member Posts: 1,651
    edited December 2012

    I also had a score of 11, grade 2 tumor, 1.8 cm.  I was told that with my score, chemo would not be beneficial, in fact, the risks outweighed the benefits. I chose not to do chemo. I think my oncologist would have given me chemo if I had insisted, but I didn't. 

    Mary

  • fifthyear
    fifthyear Member Posts: 225
    edited December 2012

    My Onco was 16, tumor 1.2cm, IDC, chemo wasn't offered.

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited December 2012

    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.
    Chemo, even light chemo, can cause heart problems, leukemia, and side effects that never go away (I had a friend who did "chemo lite", and her hair never came back)
    If you are premenopausal, chemo is more likely to be helpful, if you have positive nodes, ditto.
    We have been taught by movies and TV shows that chemo is what cures BC and protects us from recurrence. Doctors have discovered that there are several types of tumors for which this is not true.
    Your pathology is very similar to mine - I was told that hormonal therapy - tamoxifen or an AI - would be the most important factor in preventing recurrence. It may seem like "just a pill" but they do a powerful job of preventing issues for most women, for many years.
    I know this is a very scary time; I also got a second opinion. Both docs refused to even consider chemo

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited December 2012

    Oh, and about the Taylor trial - they pushed the numbers for the intermediate range out quite far at both the top and the bottom, so that they could make sure they were not inadvertantly undertreating anyone. However, these values do not apply in clinical treatment.
    If you aren't comfortable with the information your oncologist gave you, I would suggest a second opinion - or Genomic has a help line - why don't you call, and discuss it with them?

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

    @neugirl, you didn't say whether you had any positive nodes, or lymphovascular involvment. If you do, chemo might be advisable, but I don't know for sure and suggest you ask your oncologist. Otherwise, with such a low Oncotype score, Icandothis is right--the risks of chemo outweigh the benefits.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • bevin
    bevin Member Posts: 1,902
    edited December 2012

    I had an 11 score as well. I was offered chemo by  all 3 Oncologists due to young age at onset and grade. 2 stated they'd feel comfy if I didnt' take it, one said he felt better since I was so young at diagnosis if I took it.  I chose not too due to the risk of complications with chemo.  I have to say though, I do look back and wonder if I made the correct choice.  I'm a bit of a worrier by nature.

    So- given risks at that score normally out weigh benefit, you need to decide if you can move on and not questiong your choice.

    I would have opted for Chemo if I even had a micro met in a lymph node or or if I had blood vessel invasion. Both of which I was clear of.

    Good luck to you. Seek additional opinions from Oncologists if you're struggling with a decision.

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

    http://www.ecog.org/general/gendocs/tailorx_comm_ed_script.pdf

    The above link gives an EXCELLENT primer on WHY the OncotypeDX score was lowered to 11 for the TailorX trial.  Worth reading TWICE...or even a dozen times!

  • cfdr
    cfdr Member Posts: 549
    edited December 2012

    My oncotype score was 25: exactly halfway between "don't need chemo" and "must have chemo". My oncologist was very good at explaining the arithmetic behind the risk factors. She showed me how much my chance of recurrence percentage was lowered by surgery, radiation, AI, and what additional benefit there would be to having chemo (I did have the chemo). As others have said, it is not just an equation of your risk of recurrence, but also of the chance of side effects that could be just as bad: not hair loss or yucky fingernails but heart damage or leukemia. At some point, the risk of life-threatening side effects outweighs the benefits of a reduced recurrence rate.

    Count yourself lucky!

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2012

    With the latest news coming out of San Antonio this week, you have many choices ahead of you that will probably keep breast cancer from returning.  Here's some great news, followed by some other important information about other choices you have:

    http://www.sabcs.org/PressReleases/Documents/2012/9957ec3ea6c7a19b.pdf

     

    Extending Duration of Adjuvant Tamoxifen Treatment to 10 Years Reduced Risk for Late Breast Cancer Recurrence, Improved Survival

    __________________________________________________

    This is the latest newsworthy information coming out of the distinguished San Antonio Breast Cancer Symposium which was held this week.  Following this announcement, I listened to an interview with Larry Norton, MD from Memorial Sloan-Kettering discussing this important new finding.  While he mentioned that he and his colleagues have to scrutinize the study more carefully, he said that for most breast cancer patients this was "thrilling" news in the respect that he thinks endocrine therapy will eventually be used as a lifelong drug for prevention.  That said, I realize, as does he, that some women cannot tolerate endocrine therapy.  Likewise, it was also mentioned that when scrutinizing the data, it was important to look at how aggressive each patient's tumor was to see how much benefit was derived.

    In Eric Topol, MD's terrific book, The Creative Destruction of Medicine, he describes a day where clinical trials of this magnitude will be unnecessary.  He describes clinical trials based solely on genomics that will be able to pinpoint whether a treatment is right for someone.   This study illustrates EXACTLY what he's describing.  When I looked at the press release, I wondered, how young were these patients in the study for them to be taking Tamoxifen for 10 years.  How many of them had chemo before taking the Tamoxifen?  What stage and grade were they?  What Dr. Topol argues in his book is that using genomics in the future might be an easier way to identify patients' uniqueness and then it might be easier to choose a treatment.

    With the information you have, you have MANY choices.  You also don't mention whether or not you are pre or post menopausal.  If you are pre-menopausal, you might consider ovarian suppression rather than chemotherapy.  There are two trials underway looking at whether or not these treatments are beneficial.  The SOFT and TEXT trials.  Likewise, if you DO decide to do ovarian suppression and are close to menopause and are doing ovarian suppression, there is another study involving Zometa, a bone building drug that is also showing promising results at preventing recurrence.  Furthermore, diet and exercise are being studied carefully as well to measure how well they keep recurrences at bay.

    You have MANY choices and an excellent prognosis!  Good luck!

  • PLJ
    PLJ Member Posts: 373
    edited December 2012

    These ladies are right. My tumour was 1 cm, grade 2, node negative, no lymphovascular invasion, Oncotype 16, mitotic rate of 1 (we don't do ki-67 in Canada)...all positive prognostics. However, I felt like a deer in headlights at dx because I went misdiagnosed for one full year! (Lucky that when finally dx'd, I was still early stage and hope to stay that way.) I sought 2 consults and ended up with 4 MO opinions: unanimous No chemo. I was 40 at dx and hope to have many more years ahead. It is true that chemo is not well suited to slowly dividing cells. Check your path report for mitotic rate or ki-67 and get a couple of MO consults. Chemo provides a 30% absolute risk reduction so your relative reduction based on 8% recurrence would be an additional 2.4%. I was told the risk of doing chemo was 3%, which includes 1% risk of death upon infusion. Weigh your personal benefit/risk with an MO who you trust, make the decision and never question yourself. Take the path of least regret: how would you feel if you didn't do chemo and the cancer came back? What if you did chemo and it came back anyway? What if you did chemo and suffered serious side effects from the treatment? Deciding treatment is very difficult. If you are premenopausal and decide no chemo, there are other treatments that can significantly reduce your risks and have fewer side effects. Google ABCSG-12 Dr. Gnant's clinical trial and take a copy to your MO. This may be another option for you to consider. Best wishes and hugs! PLJ

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

    I had a score of 14 and every dr in my area insisted that NO ONE would give me chemo.  It would not help and there is too much risk

    Just pop a pill and you'll be ok.

    Just for another opinion I went to Memorial Sloan Kettering, the number 2 cancer hospital in the country.  I saw the head of clinical oncology.  First of all, they don't see you unless they see your slides mammos, mris, first.  Other places just looked at the reports.

    They found lymphovascular invasion and a micromet in one node.  I had been told I had neither,  She said I should have chemo.  She said that if I was in my 70's she might not think so but at 62 I could live another 30 years and that gives it time to come back.  Also, the tumor was over 2 cm.  That was the old cut off I think for chemo.

    Also, she said the Ai's have only been in use for 6 years.  It takes decades to know what will really happen.  She suggested CMF, chemo lite, which she said has been studied forever and leaves no permanent side effects.  It would give me a 3% advantage over arrimidex alone.

    I decided to do the chemo.  It was doable.  Not fun but not incapacitating.  I didn't even lose my hair!  But i can see why they try to avoid giving it.  I'm still not myself, 8 months out.

    April 15 I went on arrimidex and at first it was fine.  But after a few months the pains became unbearable.  It also made me cry all of the time.  Terrible fatigue, depression.  It's not that easy to "pop a pill" sometimes.

    So about 3 weeks ago I went off of the arrimidex.  The Sloan onco said I may be one of those who can't tolerate it.  She said "at least you had chemo".  But she never said the other drs were wrong not to suggest it.  She said they MAY have been right.  No one knows the "answer".  The whole thing is fraught with uncertainty and I think making the decisions were the hardest part of the journey.

    Good luck.

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

    BTW, Sloan dr. took the Taylor cut-off seriously.  I don't understand exactly why but she felt 14 was in the intermediate zone for Taylor so should not be dismissed.

    Also, my mitosis rate was 1 and I asked her why, with such a slow growth rate, chemo would work?  She said cancer cells, even slow growing ones, still grow faster than any other cell in the body.

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

    Also, when I asked my surgeon why we didn't take off the other breast as well (I still wish I  had), she said that once it's invasive it could be anywhere in the body.  That knocked the wind right out of me but I can see how it is true.  My mother had a radical mastectomy when she was 61.  Clean nodes.  It came back in her lungs when she was 80.  She'd had no chemo and they didn't have AI's then.

    The thing that bothered me about the chemo...it means you are off of AIs for the time you are on chemo.  I've asked a couple of drs and they say it's ok, it doesn't up recurrence.  But Ihave a hard time understanding that.  If estrogen is the "food" for the cancer, wouldn't it be bad to allow all of that estrogen to circulate for months after surgery? 

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

    Oh also wanted to mention that when my mother's lung tumors were discovered in her 80's, she received tamoxifen and they shrank!

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

    Thanks for that great article voracious.

    I was told that if I did nothing I had an 85% of no recurrence.

    The AI's raised it to about 92%.  Chemo, maybe, 95%.

    The Sloan dr said "It's only 3 % but but if you are one of the 3% it's a lot".  I agree!  I don't understand ignoring a benefit if there is one.

    I hope I'm wrong but my cynical mind goes to cost.   There is tremendous pressure on drs to hold down costs. And with Obamacare around the corner, I think it will get much, much worse. And we won't have the same choices.  The government will have the power to decide since they will be footing the bill.

    Chemo is very expensive.  Each infusion cost over $3000. Eliminating chemo could be a huge money saver and it seems that's the priority now days, not lives.  I think each life is priceless.

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

    Timbuktu...May I recommend that you read the following article regarding a book written by Dr. Otis Brawley that discusses the topic of the cost of OVER and UNDER treatment.  I've also included a youtube video of him speaking.  Perhaps you might feel differently afterwards....He believes that expensive care does NOT necessarily lead to longer life.

    http://usatoday30.usatoday.com/news/health/story/health/story/2012-01-30/Doctor-exposes-the-dangers-of-overtreatment/52893278/1

    http://www.amazon.com/How-We-Do-Harm-America/dp/1250015766

    http://www.youtube.com/watch?v=3ho_LMBiHVg

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

    http://www.atlantamagazine.com/features/2012/02/01/dr-otis-brawley

    Here's another great article about him and his ideas.  Included in this article is this terrific quote which is also in his book:

    "But don’t some people believe that all this money buys us the best healthcare in the world? When we look at outcomes, such as life expectancy, we rank fiftieth. We have very high infant mortality rates. Even if you look at white male life expectancy in the U.S., it’s lower than places like Canada, whose healthcare system we criticize. We have tremendously more CT and MRI scanners than Canada per capita. People in the United States may not live longer than people in Canada, but we sure as hell do a better job taking pictures of them. We do not get what we pay for out of our healthcare system."

    __________________________________________________________________________________

    Again, I want to come back to Dr. Topol's book.  He believes healthcare CAN become affordable, once the revolution occurs. Obamacare does NOT address the rapid changes in medicine that are beginning to occur.  However, it won't be until we look in the rear-view mirrow, that we will be able to say EXACTLY when the revolution began.  Genomics and technology SHOULD drive down the cost of medicine and improve mortality.  Individualized medicine based on genomics and technology will take the guess work out of treatment protocols....AND SAVE LIVES.

    http://www.amazon.com/Creative-Destruction-Medicine-Digital-Revolution/dp/0465025501

  • neugirl
    neugirl Member Posts: 57
    edited December 2012

    Thanks so much for all of the guidance and thoughts! I find the whole bc ordeal to be all the more hard because it seems every decision is in the patient's hands. But i will say i see the arguments of both sides. I guess for me i would be willing to do chemo for a 3% benefit even if health wise it would not be the wisest decision with SE's. I guess its just like how i did a BMX even though i was told i didn't have too. I am just scared plain silly by this bc and am willing to do anything and everything if it means i think it lowers my chance at all of local/distant. i think i would always worry. but i will also listen to what the onco has to say. but all of your advice has been very helpful.

    I have clean nodes, no LVI or anything btw. Just 1.2 cm tumor. I am happy the score came back fairly low but i am still worried about recurrence. it just seems no matter what anyone says cancer can always be a tricky beast. this is what worries me. What if for some reason they are wrong or switched my test with someone. I guess this is silly but this is just how my paranoid mind works lol. I guess I also don't know what it really means to have a 92% chance of no recurrence. i got breast cancer and my chance of that was like what 2% or something. ughhh thats why i worry. 

  • neugirl
    neugirl Member Posts: 57
    edited December 2012

    im in my early 50s btw and just turned postmen right before my diagnosis.

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

    Could you be more specific and elaborate where you got that 3% figure of chemo benefit? I had a higher score of 15 and was informed that the risk of chemo was greater than the benefit.

  • Galsal
    Galsal Member Posts: 1,886
    edited December 2012

    Interesting.  A 12 for me from Onctotype.  Was told an 8% risk without Chemo and 4% with it.  I can live with a single-digit risk so no need to subject myself to any Chemo.  Was 51 when dx'd.

  • neugirl
    neugirl Member Posts: 57
    edited December 2012

    voraciousre, i haven't spoken to an oncologist yet, but that is the number i keep hearing and i think thats what they told timbuktu... i have just heard that some women are told that they can get a 2% benefit and for me personally, i think that sounds like enough, but i know to a lot of women that its not... i was just trying to see some opinions on the matter. i tend to act out of fear which is not the best, but its a tough choice.

  • Galsal
    Galsal Member Posts: 1,886
    edited December 2012

    next Wed am having blood drawn for the Brca testing.  will learn if I made a poor decision.  three consecutive generations of breast/ovarian cancer (me, breast; mom, breast; her aunt, ovarian (died from it).  turns out that one of the aunt's brothers died of pancreas cancer and his daughter is on Arimidex but she's not yet with full-on breast cancer.  this is all from my mother's father's family

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

    There are no right or wrong decisions. But whatever decision you make should be based on accurate information. With an Oncotype DX score of 11, you will NOT reduce your chance of recurrence by 4%. Keep in mind the risks of chemo could also diminish your quality of life and mortality. In fact, if you read the fine print of the Oncotype DX test scores, the patients, on average, who had Oncotype DX scores lower than 18 and only did Tamoxifen, had better 10 year survivals (96.8%) than those who had scores lower than 18 and did both Tamoxifen and chemo (95.6%).

    That said, the Oncotype DX is just one piece of many pieces of info used to help make the decision.

  • neugirl
    neugirl Member Posts: 57
    edited December 2012

    wow Galsal, good luck with your BRCA testing. I hope it turns out negative for you. 

    Its scary how all this stuff can be passed on. There is a whole line of relatives from Europe who we know nothing about since my mother/father immigrated with just their immediate family and lost touch. I wanted to do BRCA too, but they said unless you have a strong family history or are Jewish its not recommended. 

    I also worry all the time about other cancers and possible links. I am most worried about ovarian cancer now. I assume there are other genes beyond BRCA that they haven't pinpointed yet. I was thinking of doing hysterectomy. I feel if i could get breast cancer I could get ovarian too. No cancer in the close family we know of other than skin cancer and all have lived into old age! not sure if that is really recommended. Does anyone know if the AIs or tamoxifen still work if you have hysterectomy? I also heard there could be a link between bc and melanoma, thyroid and pancreatic. The pancreatic is one that also really scares me as there is like no way to constantly check and it is very hard to treat.

    voraciousrs, thanks for the info. that is very interesting about the survival differences. i guess for me it is so hard to understand what all these percentages really mean for the individual person. i wish things were more certain but i guess that is life. im assuming that the onco will have firm opinion tho so maybe that will help. 

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2012

    neugirl, you've just been diagnosed with cancer, so you are worried about cancer.  Any cancer.  That makes sense.  This is the threat that's been put in front of you, so this is what you are thinking about and worried about.  Most of us have been there!

    But what happens if you go to your doctor next week and he takes your blood pressure and finds that your blood pressure is through the roof? Maybe it's all the stress. Suddenly you'll be faced with a whole new set of risks and concerns. And you will start to focus on what you can do to reduce those threats to your health. 

    I'm not suggesting that this will really happen, of course.  But I'm making the point that as we get older, we face all sorts of new health worries.  You are facing breast cancer today, and in 6 months or 2 years or 5 years you may face something completely different.  And that's why, in treating your breast cancer, you have to consider your overall health, not just the fear of breast cancer that you currently face.  Because everything is connected. Taking a treatment for breast cancer that only provides a minimal reduction of your BC risk but also exposes you to other new and very serious risks isn't a good decision for your body or your health.  Worrying only about breast cancer and other types of cancers, and not also thinking about possible risks to your heart and your lungs and neuropathy, etc. isn't good for your body and isn't good for your health. 

    You need to look beyond breast cancer, and beyond cancer, and think about your overall health as you make your treatment decisions.  Hopefully the oncologist will have information to share with you, about your BC risk, about the risk reduction you'll get from chemo, about the risks of chemo, etc... that will help you with this decision.

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