oncotyping for IDC

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darsura
darsura Member Posts: 71
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I just had a right sided mastectomy.  Path report showed both ILC (15 mm) and IDC (6 mm) to be present.  Both stage 1, grade 1.  Both estrogen receptor positive and HER2 negative.  No nodes involved or lymphovascular invasion identified.  The ILC was sent for oncotyping but not the IDC. My surgeon said that the IDC did not need to be sent because of size, stage, and that it was well-differentiated, and those scores usually come back low.  I questioned my oncologist about why the IDC would not be sent, and he said that it was because the oncotype was not as useful in the size IDC I had.  I cannot find any information to support the information I have received, and still wonder whether both specimens should be sent off for oncotyping?  I am awaiting the score for the ILC, and if it comes back in the intermediate or high range, then I guess it doesn't matter as I will end up on chemo anyway.  However, if the score is low, I may still wonder what the score would have been for the IDC.  Any thoughts, advice, or information for me?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2008

    arsura - I tend to think like you -  I'd want to know what the score is for the IDC as well - but grade 1 is an indicator that the cancer is non-aggressive..  But -  you're right in that if your ILC score is high - that will make your decision for you that would also be treating the IDC.  My IDC was 9mm and my oncotype DX recurrance score is a 19. My tumor was stage 1 (no node involvement), grade 2/3 and ER +++  PR +++ Her2 negative. 

    Gentle hugs and hoping that your oncotype score will make your treatment decisions easy!

    Doreen 

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  • darsura
    darsura Member Posts: 71
    edited January 2009

    Thanks for your replies.  I think my oncologist agrees with my surgeon, but I am thinking of getting another opinion.  I'll just wait to see what the score for the ILC is first, and that should be any day now.  I'll let you know.

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    I agree with you arsura.  I had two tumors located approx 4cm apart.  Both IDC.  When I went for a second opinion, the dr said I should have the 2nd lesion oncotyped.  Both tumors had the same histology (tubular) and the same number (17).  Since yours are two different types of cancer, your doc should be thorough and submit the other tumor for testing.  However, be forewarned.  Not all insurance companies will cover the second oncotype test!  Good luck.  I was in this same position last year.  I'll be thinking about you.  Please let me know how it all works out. 

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  • Lories
    Lories Member Posts: 351
    edited January 2009

    Hi arsura - just got back from meeting my radiation oncologist, and I had asked him about the oncotype testing.  He told me that if the cancer/tumor is less than 1cm they usually do not oncotype them.  So that may be why they did not send the other in. 

    Just a thought.  L

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  • darsura
    darsura Member Posts: 71
    edited January 2009

    Hi to all.......Lories, I think you are right.....that size and grade are the reasons my surgeon is not sending out the IDC specimen (6 mm, grade 1)....but I would feel better if she would.  I am uneasy because I had 2 different types of breast cancer (15 mm ILC....found on pathology after mastectomy....not expected by me !), as you said, every8thwoman and 2tzus.  Well, I will hear about the score for the ILC very soon, and that may decide the course anyway.  I may raise this issue again with the surgeon and oncologist.  I'll keep you posted.

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  • Lories
    Lories Member Posts: 351
    edited January 2009

    I did not realize it was a size thing when I was arguing with my radiation oncologist today.  I was really hoping to get tested, but I may see if there is a clinical trial.  I just want to make sure I get rid of this......

    That is worrying to have two different kinds, but I did read somewhere that the bigger one always prevails.  I think it was in Dr. Love's book. 

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    Mamhop,

    Did you get any advice on chemo based on your tubular diagnosis?  I too was diagnosed with tubular (fairly rare subtype) and had to do the research on this on my own.  There is only one good publication in the literature about tubular breast cancer and this paper is 10 years old!  I was wondering what if anything your drs said about tubular.  Thanks.

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    No.  I didn't have DCIS.   Since my two tumors were located apart from ea. other,  I had a R mastectomy.  Didn't get a choice there.  My oncotype dx was 17 and I opted out of chemo.  I keep hearing that tubular is favorable (actually this website had the most info).  I am disappointed that my oncotype wasn't lower and think that maybe I wasn't "pure tubular" due to the score.  My onc called this a "nuisance cancer".  I think my cancer was "inherited" because my mother and grandmother both had bc.  Do you know of anyone else with tubular?  What was the long term outcome?

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  • Snappygoddess
    Snappygoddess Member Posts: 91
    edited January 2009
    Aren't ALL cancers a "nuisance"? Tongue out
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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    Hello Snappygoddess,

    I suppose they all are.  I think this male dr was trying to make me feel better about the whole thing but it was a real understatement.  At the time he said it, it felt like a whole lot more than just a nuisance.  Hope I didn't offend you.

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  • Snappygoddess
    Snappygoddess Member Posts: 91
    edited January 2009

    Every.....you did NOT offend me.. it was just my attempt at humor....something which I am maintaining throughout this whole "nuisance " thing!! I find it all annoying.. chest port, chemo, missing work, hair loss.. the whole enchilida....

    Don't ever worry about offending me.. I am thick-skinned and have a wonderful, wacky, insane sense of humor!!

    HUGS 

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    Snappy.....

    I wish you all the BEST.  I will be thinking of you.

    SOFT HUGS BACk

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    Yeah, me too.

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  • Gitane
    Gitane Member Posts: 1,885
    edited January 2009

    Snappygoddess,  I appreciate your "nuisance" comment.  Never will I forget the call from my GP telling me it was just a "bump in the road".  Later I found out his own mother had breast cancer.  Could it be that doctors are that uncomfortable with a life threatening diagnosis and don't know how to relate to us when delivering the news?

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  • darsura
    darsura Member Posts: 71
    edited January 2009

    Got the news today that the oncotype score for my ILC is 9.  (Was told that guidelines do not recommend sending grade 1, 6mm tumor for oncotyping, so none was done for my IDC).  So, no chemo, and the next step is to meet with the oncologist to discuss AIs.  Don't know which one he will recommend, but I know I have a lot of reading to do about these drugs before I meet with him! 

    Dx 10/22/2008, IDC  6mm Stage I, Grade 1, Right-mastectomy, no reconstruction, Path report following surgery showed 1.5 cm ILC and LCIS, Stage 1, Grade 1 too (that was unexpected!), 0/4 nodes, ER+/PR-, HER2-, Oncotype score for ILC =9.  

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  • fairy49
    fairy49 Member Posts: 1,245
    edited January 2009

    Arsura! that is so wonderful, no chemo!! congratulations! I am just waiting for the results on my oncotype test, I am keeping my fingers crossed!

    Lorraine

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  • darsura
    darsura Member Posts: 71
    edited January 2009

    Thanks fairy49....I am happy about skipping the chemo part, and busy reading what everyone has to say about the AIs.  Good luck to you.  I'll be thinking about you!

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  • Britt
    Britt Member Posts: 731
    edited February 2009

    Hi, All -

    Forgive me for what may be construed as being a silly question: I have read about candidates for the Oncotype test.  From what I have read, the ideal candidate is post-menopausal, Stage 1 or II invasive, node-negative and Er+.  I am still premenopausal and have a micromet node (0.2cm) involvement in the sentinel (having ALND on 2/10).  Does this put me in the "grey area" of being a candidate for the Oncotype test?  BS is going to try, anyway.  Just want to know if anyone with a similar IDC background was selected for the Oncotype.  Thanks!

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  • Britt
    Britt Member Posts: 731
    edited February 2009

    thanks, mamhop.

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  • Britt
    Britt Member Posts: 731
    edited February 2009

    Thanks again!  BS did tell me she is just taking out the first tier of nodes since my second node was negative.  We shall see.  Will also be interested to see what my second path report will say - of course, will let you all know how it turns out. Better safe than sorry at this point!

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