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NEW Oncotype Dx Roll Call Thread

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  • diplomom08
    diplomom08 Member Posts: 1
    edited November 2010

    Hi!  I just received my score last night from my Onco.  I received a score of 10, which translates to a 7% recurrence rate, provided I am on Tamox.  Here are my other stats:  RM and SNB.  

    I should add that I am in the gray area for radiation.  All margins were very clean except for 1.2 mm anterior margin.  We are currently in discussion with my RO and PS about extra scraping/removal of questionable areas during reconstruction, in order to avoid radiation.  I am also not 100% sure as to whether or not I will take Tamox.  We have to look at all statistics and have several discussions with the oncologist.  I may also do on a trial basis and continue as long as there are no (major) side effects.

    Oh, and in addition to the IDC, I also had DCIS and the large amount of DCIS prevented the uber-clean margins, not the IDC.

    Thanks for adding my name to the list!

  • DucorpsToo
    DucorpsToo Member Posts: 11
    edited November 2010

     I'll add my stats below:

    5% = 6 score (LMP, SNB,RAD x 34,TMXF)

  • raincitygirl
    raincitygirl Member Posts: 700
    edited November 2010

    15% recurrance, 23 score, lumpectomy, CMF, radiation, age 57

  • lee7
    lee7 Member Posts: 204
    edited December 2010

    Just got my Oncotype score of 20, 13% chance and I am weighing the benefits (if any) vs. the risks (many)  of doing chemo. The onc originally said dose dense AC, then T, but I was too afraid of the A.  After seeing the 20 score, he suggested CMF because it turned out I do have 1 positive sentinel node and he said that makes the Onco score not a real 20, it would be higher.    I'm 51, postmenopause and planning on taking an AI.   I just don't know if doing chemo is worth it but with the positive node I am torn now deciding what to do.    Any guidance would be greatly appreciated!!

  • marlenet
    marlenet Member Posts: 114
    edited December 2010

    lee7-that is a tough decision. Have you though about getting a second option?  I did not have any pos nodes and decided to do chemo because of my age (45)  Chemo, for me was doable.  It sucked but I, for my own piece of mind did it.  Good Luck with your decision.  

  • lee7
    lee7 Member Posts: 204
    edited December 2010

    Thank you Marlenet,

    What chemo did you do?

    Neversaydie,  Did you onc say why he recommended C/T x4 ?

    I know triple neg tumors need specific chemo but I'm still trying to figure out why oncs pick different combos for the same type of ER+, HER2- cancers.

  • islandmom
    islandmom Member Posts: 131
    edited August 2013
    I got the Oncotype results and my score is 25, 16% chance, age 48, post menopausal.  I had a RM, IDC, my tumor was 1.9 cm, the 3 nodes removed were clear and I had clear margins, grade 3.

    My onc wants me to do TAC (Taxotere, Adriamycim, Cytoxan) every 3 weeks X 6, with A/I after.  I am to start Jan 5th.  However, after reading these helpful post I am beginning to question whether it is overkill.  I have seen may women with similar stats with less stringent treatments.  I was supposed to have started last Wed. but postponed for the holidays.  

    Any input would be greatly appreciated.Undecided
  • SusansGarden
    SusansGarden Member Posts: 754
    edited December 2010

    I wish it wasn't such a crap shoot! I'm still awaiting my oncotype score.  But discussed with my onc what chemo he would suggest IF it came back not low.  He said he would not choose an aggressive type since I'll be doing the tamoxifen and I am VERY high ER/PR (allred 8 out of 8 on both).  He said TCx4. ....when I asked about the "not losing hair one" ;) .. he said that he would be fine with CMF as well...just said it would be longer (6 mos instead of 3) and I'd have to weigh that out.

    I still can't shake the feeling like chemo is just to make us all "feel better" in my case?  The surgery pathology actually downgraded my tumor from 3 to 2 (though I guess there is still some debate ~ either way..it def scored lower than the orig biopsy)  I'm still super high ER/PR..we know tamoxifen is best for that.  Having chemo would delay my using tamoxifen.  The oncotype is based on statistics.  Do the statistics take into consideration that I exercise, eat healthy, take supplements (helps decrease chance of reoccurence).  It's not like I'm doing nothing and just sticking some magnets and tea leaves on my chest and calling it good! ;)

    I figure I got rid of the "breeding ground" with the BMX....and Tamoxifen will be my "weapon of choice".

    Ugh.  I just hope my score comes back low or super high so that I don't have to make the decision in a "grey area". :( 

  • SusansGarden
    SusansGarden Member Posts: 754
    edited December 2010

    Oh, and when I asked why TC and not TAC?  My onc said that the "A" isn't really effective in ER positive tumors according to the latest studies.  He just got back from the San Antonio conference and is well respected as THE breast cancer oncologist in my area so I really trust his opinion.

  • lee7
    lee7 Member Posts: 204
    edited August 2013

    Susans Gardens

    That's what I also read earlier about the A and why I questioned my onc wanting to give me dose dense AC, followed by T,  instead of something like CMF.  At that appt I didn't have the onco score yet, but after it came back a 20, he did talk about CMF at the 2nd appt.  I too am very ER+ but also post menopause and did have atleast 2 positive nodes now. 

    With TC, do youknow if it is Taxol or Taxotere they use and does that matter? I also thought that doesn't do much for ER+ tumors either.

     IslandMom,

    I'm in FL too, and our scores are in that grey area about whether chemo will help or not. What feedback did your onc give you about the score?   I still don't know what I will do.  One day I am ready to do the CMF, then I think maybe I really need to do the "stronger chemo", then I go back to thinking I shouldn't be doing it at all because like you, I am basically healthy, eat well, exercise, and will be doing the hormone therapy.   Plus I had just a lumpectomy, so I still have rads I'm supposed to do and I don't want to do them either.  Had I known more about this in the beginning, I would have chosen the mx but it all happened sooooo fast.

    Rainy city girl & Marlenet, 

    How did you do on chemo? Should I be checking out some other another threads about CMF?    There is so much info here on these boards I keep getting lost.

  • islandmom
    islandmom Member Posts: 131
    edited December 2010

    SusansGarden and Lee:
    Thanks for the info.  I will make an appointment to see my onc again.  His explanation was that I am young and we need to be aggressive.  This was presented at the same time with the Oncotype results so I did not have time to digest it and do some looking around.     

    I also have good health habits and other than BC I never been sick.  I have made peace with the idea of chemo, but I do not want to expose myself to more than I have to.  Especially if the"A" is not as effective in ER+ cases.  It is frustrating trying to navigate in finding what the best options are.  

    TC x 4 seems like the most common type of treatment for similar stats.  I do not know much about CMF.  

    I hear you lee7 about the lumpectomy option.  My surgeon's recommendation was a lumpectomy, I chose the mx because I did not want to have radiation.  When I met the same surgeon for my follow up he suggested I remove the other one so I would not have to worry about it.  I have not decided that yet since I have some time before reconstruction.  

  • Drim
    Drim Member Posts: 134
    edited December 2010

    islandmom- I am certainly not a doctor but I would share your concerns. In fact I would highly recommend you go for a second opinion. I had similar stats to yours - 1.9cm ER+/PR+ tumor, no nodal involvement, oncotype 19, age 43. I later found out I was HER2+ but with all of the other stats my oncologist (and the tumor board) all agreed that TCx 4 was appropriate. Of course I get the H too and am on tamoxifen. The fact that you had a Mx and clear margins, as I understand it, does not really factor into the chemo treatment as chemo is for distant recurrence and the Mx and clear margins deals with local recurrence.

  • islandmom
    islandmom Member Posts: 131
    edited December 2010
    Thanks for the clarification about the margins and MX.  About the chemo I am right trying to schedule an appointment with another doctor.  I did not give it much thought at first but I should have planned that early on.  I did that with the surgeon and ended up being operated on by the surgeon who gave the second opinion.  
    Tomorrow I have to go to the hospital and get the actual films from the last mammogram and biopsy slides and all other reports.  My recommendation would be to plan ahead, so you are not running at the last minute like I am.   
  • tideknott
    tideknott Member Posts: 10
    edited January 2011

    I just got my Oncotype score.  I'm 55, good health Score 18,   I see the onc on Friday.  I am not sure what she will tell me or recommend.  Does anyone have a list of questions.  I just wish it would have not been in the grey area!

    Beckie

  • kira1234
    kira1234 Member Posts: 754
    edited January 2011

    Does she suggest you have chemo, if so which one, how much will it reduce possible reacurrance. What are the side effects, and do they out weight the possible advantages.

    I see you are ER/PR positive, so what will she give for that. and how much will that lower my risk.

    We who are in the gray area are having such a hard time deciding. In my case my Onc. wanted me to be part of the trial going on, but I was unable to because I had had radiation already. After that she kinda left the decision up to me but with the feeling left by her I really should.

  • tideknott
    tideknott Member Posts: 10
    edited January 2011

    Kira1234

    When I saw my ONC at Moffitt two weeks ago she wanted me to have the oncotype test done.  I will be taking  Arimidex for 5 years.  I am afraid she will leave it up to me if I want to choose chemo, 4 X T/C.  She originally told me that the risk of recurrence would be 4% less if I were in the grey area.  It seems so small unless you are in the 4% that would get recurrence. Changing the no recurrence from 91 to 94 seems like a lot. I guess I will just have to trust her and my instinct!  Oh my why the wait.  I see her Friday.

    Beckie

  • lee7
    lee7 Member Posts: 204
    edited February 2011

    tideknott- 

    My onc is affliated with Moffitt. My oncoscore was 20 but I did have the positive node issue to deal with and he suggested CMF in my case.   You might ask about CMF vs TC.  The C is the same drug, and the difference in overall effectiveness may be quite small and the toxicity could be less.   The data the Oncoscore goes by involved years of trials where they used CMF.

  • bevin
    bevin Member Posts: 519
    edited January 2011

    Hello, What an interesting forum.  I am fairly new to this site and I was diagnosed in August 2010, Onco score 11,  no lymph node involvement with 5 nodes tested, age 45. Low Onco score  So no chemo for me.  I have to say tho- it made me nervous to rely on this test as doctors were certain from the size of my tumor, I'd likely need chemo and had a chance for lymph node involvement. I had 38 rounds radiation and now hormonals..

    Tideknott: re  guidance on deciding to take chemo when in the grey area - My Onco  said people in grey area 19 -28 normally decide on chemo or not based on vascular invasion and /or lymph node invasion. If yes - normally opt for Chemo

  • tideknott
    tideknott Member Posts: 10
    edited January 2011

     I think I have made my own decision on Chemo, I will wait for my ONCs recommendation but I don't think I could stand the thought of a distant recurrence and regretting I had not done Chemo. I will do the Chemo 4X T/C.  At least I know I did everything I could to get rid of the monster.  I think I will sleep better tonight.  We are all strong or we wouldn't be on the boards, we would be crying in our milk, as my mother would have said.  I think I am making the right choice.  I'll let you all know Friday what the ONC says, but I can do it!

  • SusansGarden
    SusansGarden Member Posts: 754
    edited January 2011

    Good luck with your decision tideknott!!  Being in the gray area is a tough one.  But I think you are approaching it the right way.  Is it a decision you could live with if there is a reoccurence.  I hope you slept well last night! :)

  • aprilgirl1
    aprilgirl1 Member Posts: 805
    edited January 2011

    Susansgarden - just saw your oncotype post - congrats on the low number!!!  I was wondering how you were doing since I saw you in Seattle.  How is everything else?

    Tideknott - I was also in the gray - score of 22 or 23.  I did the chemo (oncologist left the decision up to me but also said she would do chemo if she had my score, so....). I felt exactly as you do - do all I can now, and I can live with the possibility that chemo really didn't do much for me over a situation of Oh S... - chemo would have really helped.  It was much more tolerable than I expected (of course everyone has a unique experience). 

    Stay strong everyone - I am so THANKFUL for the oncotype and a thread like this where we can compare scores and treatment recommendations.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited January 2011

    Hi aprilgirl1! I remember you from Seattle! :)  Yeah.. I was pretty happy when I got the low number :) .. though my oncologist said he would have been okay with CMF if I was in the gray or high area (which is the course you had, right?) ..so I wasn't as scared to do chemo..but still was happy not to feel I "had" too. :)  I am now back at work, doing tissue expanders (exchange will prob be in April) and starting Tamoxifen this month.  I'm eating really healthy and exercising... funny.. because I probably feel  healthier than I have for quite a while!  I feel like I have a new lease on life. :)

    I also am so thankful for the availability of this test!! Imagine what more there will be available even 5 years from now! :) 

  • saturn
    saturn Member Posts: 52
    edited January 2011

    My Oncotype score came back at 15, which for me equals a 9% distant recurrence.  Funny, I kept telling myself the score would be a 5 (I was half right!), and was a bit discouraged by the 15.  My husband and also my MO and RO seem to be very happy with it so I guess I am too.  With negative nodes, no BRCA, I will be starting my rads next week (went for simulation today).  Lets get on with it!

  • marlenet
    marlenet Member Posts: 114
    edited February 2011

    lee7-sorry I have not been here for a while, working OT and getting home at 7 each night,  I have T& C.

    I did very well on chemo.  I worked the entire time.  I rested on the weekends.   

  • lee7
    lee7 Member Posts: 204
    edited March 2013

    Hi marlenet,

    I'm hoping I can work during CMF chemo also. My start date has been moved to next Monday. I guess I won't know till I give it a try.... 

  • tideknott
    tideknott Member Posts: 10
    edited January 2011

    Hi Everyone, I have had a very busy few days since I was last on.  My visit to the Oncologist was what I expected, the decision was left up to me with a score of 18.   I said, LET"S DO IT! So I start 4 X TC on Jauary 21st, Having a colonoscopy and endoscopy today (non related just routine ) so you know what I have been doing since yesterday! I get the port in on Wednesday the 19th.  Will take Decadron, Zofran and have a Neulasta shot each time.  I'm ready to be rid of this thing called cancer!

    Have a good day everyone, I will be being put to sleep soon! :-)

    Hugs

    Beckie

  • mdg
    mdg Member Posts: 1,468
    edited February 2011

    I am adding my stats.  Age 45.  Stage I IDC; BLMX with immediate reconstruction.  No spread to nodes on either side. Tumor was 1.4cm in R breast and an additional other area of 2mm that was cancer.  L breast had nothing.  Strongly ER/PR+ and HER2-.  Oncotype was 17 making recurrence rate 11% assuming I do 5 years of tamoxifen.  One med onc said no chemo.  The other said chemo.  I am doing Taxotere and Cytoxan - 4 cycles.  My decision was based on the fact that I had angiolymphatic invasion listed as "present" on my pathology report.  I am Grade 2 and have mitotic rate of 1.  The angiolymphatic invasion part scares me a lot eventhough I had clear nodes.  Since I have a 4 year old son, I am doing everything I can to blast anything in my body now.  I start in March....freaking out!  

  • marlenet
    marlenet Member Posts: 114
    edited February 2011

    Hi lee7

    How are things going?

  • marlenet
    marlenet Member Posts: 114
    edited February 2011

    Hi everyone! 

    I hope everyone is doing well. 

     I had Taxotere and Cytoxan 4 treatments. On 3/17 it will mark my 2 year since my last chemo.   When it comes to chemo, all I can say is listen to your body, listen to your Dr. and fight like a girl! Wink We can beat breast cancer!

  • tinat
    tinat Member Posts: 2,235
    edited April 2011

    My Oncotype DX score is 18 (11% chance of recurrence on Tamoxifen alone).  NSBXM and SNB with TE on 2/16/11.  ILC and DCIS.  0/1 node.  No rads.  I am post-menopausal and have opted for 5 years of A/I (Arimidex).  Chemo would only add 3% extra protection for me so I've decided against it with my oncologist's full agreement.

    The Oncotype profile was very similar to the Adjuvent! Online results for me.