Node Positive and NO chemo...any of you ladies have input?

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  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    I didn't get the oncotype test either... I was told with positive node involvement, I was getting chemo regardless, so no need for the test.... age was not even mentioned, but I too am / was premenapausal.

  • Sereena
    Sereena Member Posts: 99
    edited April 2011

    What I was saying with age and the oncotype was that tsundermann is still young at 37 and if she is pre-menopausal, grade II tumor, w/a positive node chemo would probably be knocking at her door so oncotype not needed. Sorry:-(

  • nikola
    nikola Member Posts: 466
    edited April 2011

    I agree with seerena that age is very important. I was 42, stage 1, grade II, no nodes and was offered chemo. My onc told me my age put me in higher risk and if I was at least 10 years older he would be considering no chemo.

  • BlueLily
    BlueLily Member Posts: 60
    edited April 2011

    I am 46 - premenopausal with stage 2, grade 1... with 1/3 nodes had a low onco-score with a low mammoprint as well.  I was not offered chemo & got a second opinion which concurred ...no chemo based upon the grade 1.  They both said the same -- low grade = low aggression on reproducing cells.  My nodes are being treated with radiation, and any renegade cells would be treated with tamoxifen for 5 yrs and AI for another 5 yrs.

  • Sereena
    Sereena Member Posts: 99
    edited April 2011

    Aggressive tumors need to be zapped right away where as slow growing (less aggressive) Grade I tumors, simply put, can be starved to death over a period of time. I just hope there right about all this!!! 

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2011

    If I had a lower grade tumor, I would certainly have opted for NO CHEMO!!!! But grade 3 with 2 positive nodes - and nodes were negative on follow-up PET scan, so probably made the right choice for survival, but a poor choice for quality of life after all the side effects.  Now the mission is: Find joy and peace in love.

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    My only issue with the chemo is the hair thing... Otherwise it has been tolerable, and i don' regret it at all.

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2011
    bdavis, are you getting any hair back at all??  I FINALLY ditched the wig on Easter day (thought it was an appropriate transition time) - got great response from my students and colleages - they seemed to think short & sassy is just my style! Of course, I haven't seen me TRUE hair color in 30 years, so it is kind of fun to see what it will turn out like - so far, just VERY short, salt & pepper. Wink  Took me over 4 months from last chemo to get here, though. Am still plagued by the neuropathy.  *sigh*
  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    I have one treatment left... but my hair did grown some between 3rd and 4th treatments, so some of it is an inch long... the rest is where I buzzed it at 1/8 inch and by the temples, nothing at all.. its really attractive...:)

  • Omaz
    Omaz Member Posts: 5,497
    edited April 2011
    n3ypb - I am about 5 months out and still 'plagued' with the neuropathy.  I actually think my fingertips are worse.  How are your eyes (is it both eyes?) doing?
  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    node positive can be oncotyped

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    Node positive can be oncotyped BUT in my case the MO felt I'd be getting chemo regardless so didn't see the point... Most node positive women do get chemo, so the trend may be to not test??

  • rianne2580
    rianne2580 Member Posts: 191
    edited April 2011

    Omaz,

    Thanks for the math site, I would get very little benefit from chemo according to it, less than 3%. I think it said with no treatment I would live 28 yrs as opposed to 30, then the % of a different death. I am very sorry about your neuropathy. I know someone who still has it in her feet, but can drink cold water now (2 yrs out). I fear radiation for my bones, I have osteopenia, for my thyroid (that darn nodule) and my lungs, some scaring there already. My R/O said a small lump would form within 2 year, if it were to recur and we could take it out and do rads. This is if we wanted to watch it. I'll be getting MRI every year with mammograms, and with that breast gone, only small skin left so no more dense breasts.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    It's tricky, because the math is based on a small sample, but infact the oncotype holds true even for node positive.

    An 11 with three positive nodes does not get more benefit from chemo than an 11 with no nodes.

    It's still controversial, but I would want to know that the chemo would benefit me. 

    I guess if the onc has a reason that you would have chemo even if your test was very low, it's not necessary. But I think there was someone who's test came back a 0 or 1 or something.

    Anyhow, it's still emerging.

  • Lee7
    Lee7 Member Posts: 657
    edited April 2011

    Since I could get the Oncotype done, even with the positive node, I asked for it.  I wanted to know what the score was because they do look more specifically at the tumor and how it behaves.  They also are a 'second set of eyes' to look over the tumor sample and test it.  It is like having a second opinion on the pathology report, which I was glad for.  I also had my path slides looked at by the path dept of another facility than where I started, and they came up with some different info than the first.  By putting all the info together, I had a better idea of what I was dealing with.

    The Oncotype test,is mentioned in the NCCN 2011 Guidelines, page 16.  It does say if your positive node is less than 2mm consider following the Oncotype recommendations using your score. If it's low, then no chemo, intermediate than maybe, if high then yes chemo.  You can look at the flow chart and see where your stats take you.  If the node was greater than 2mm, then it does recommend chemo.

    Mine was 3mm, and in the big picture....who knows how important a 1mm difference will be. I think we'll know more in the future once they have more info from the trials using Oncotype,(like the TailorX trial).    In the meantime, we can just do what we think is best in our own particular set of circumstances.  

  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited April 2011
    Some insurance companies will NOT pay for the oncotype test if you have any positive nodes regardless of age, pre-menapause or in menapause.  That is what I ran into.  My oncologists said that it would not change the recommendation for chemo, therefore they suggested that I save my money for a vacation to celebrate after I was done with treatement.  They also said it was my decision.  I decided to save it and go to Hawaii this summer.
  • Sereena
    Sereena Member Posts: 99
    edited May 2011

    ProudMom_Wi..., With a Grade II tumor I also would have passed on the oncotype and moved forward with chemo. I was terrified to skip chemo but after alot of research and having a Grade I tumor and with a very low oncotype score I moved forward with radiation and skipped the chemo. Only time will tell.................

  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2011

    I also ran into the insurance issue. Even though my tumor grade is low insurance hasn't paid for it. By the way I have Blue Cross Blue Shield.

  • Emell
    Emell Member Posts: 8
    edited May 2011

    The oncologist told me that the oncotype test indicated that neither chemo or radiation was needed.  She has put me on Arimidex for five years.  The BS removed eight nodes and two were positive.  My rate of recurrence is 7% for 10 years.  As Sereena wrote, "only time will tell".

  • Lee7
    Lee7 Member Posts: 657
    edited May 2011

    Has anyone posted info about RxPonder trial by SWOG?  It sounds similar to the TailorX trial currently running only this is for 1-3 node positive ER+ women with OncoScores of 25 or less.

    They are seeing if that group can be spared chemo, and only use hormonal therapy.

    http://www.caring4cancer.com/go/cancer/news?NewsItemId=45275

  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited May 2011
    lee7 - Thanks for posting about TxPonder trial.  It sounds interesting and something that definitely should be studied.
  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited May 2011
    Sereena - Yeah, even if I had a Grade 1, with 2 positive lymph nodes I was still going to do chemo, I just wanted to know what the changes of recurrance were because I was on the fence regarding radition since I fell into the grey area with Rads.  Plus it would give me better idea of how what my cancer was like.  Hell it invaded my body, I just wanted to know more about so I could understand what I was up against better.  I wanted to know my enemy as best I could.  But that didn't happen so I did aggressive chemo and will now do Rads.
  • bdavis
    bdavis Member Posts: 6,201
    edited May 2011

    Proud mom... I would do the same with the 2 nodes... I don't need rads if I have a MX, so I am in chemo (finish tomorrow) and then MX in July and then tamox for 5 years.. Also seeing an RO Thursday just to cover my bases (in case I decide to do rads instead of MX, but very very unlikely) I want to take care of the supposed good side too that is being monitored.

  • edwards750
    edwards750 Member Posts: 3,761
    edited May 2011

    Me too kira...I am having the same problem with Blue Cross. Genomic called them and they approved payment; I had it done and now they are denying the claim. I wondered why. I called Genomic and they were vague about it but said they would appeal and appeal. You bet they will because they talked to Blue Cross not me. If I had known they werent going to pay it I would not have had it done. The test is over $4k. My BS told me if you have a micromet as small as mine they typically treat it like you are node negative. I have to admit I wanted the test because my treatment plan depended on the score. It was low I got radiation. By the way I am sure Genomic told  you they will work something out based on your household income if insurance didnt cover it. Well again they said they would and now they wont. My BS office was livid. They said the cost of chemo is ten times what the test costs. As far as I am concerned that is their worry. All my tests were sent to them by my BS and it shows the micromet in the SN. So, that makes the test invalid if you have node involvement?

  • BlueLily
    BlueLily Member Posts: 60
    edited May 2011

    Edwards750 - I had a call from Genomic today ....appeal was denied ... they are faxing me a letter to appeal on their behalf. The test is the reason I'm not in chemo. We'll see..

  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    bdavis - Congrats on last chemo tomorrow!!!
  • bdavis
    bdavis Member Posts: 6,201
    edited May 2011

    Thank you... onto the next step!!

  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    bdavis - what is the next step for you?
  • bdavis
    bdavis Member Posts: 6,201
    edited May 2011

    Well... appt with radiation oncologist Thursday... Consult with PS and BS in NOLA for DIEP and MX.. and then most likelt skipping rads and have BMX July 21st in NOLA.... then tamoxifen starting in August.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2011

    Genomic seemed like they would be quite helpful....they ran the numbers in case I was denied and mentioned I could qualify for finanacial aid....even tho my husband has a decent paying job.

    I think it is so crazy that insurance companies would rather pay for chemo than the test...that was the situation in canada for a while. Just imagine if you ended up in the hospital due to SE's one day would cost more than the test, plus the shots for blood cell counts and on and on.

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