ILC and oncotyping results

dharris
dharris Member Posts: 16
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi,  

This is my first posting and would really appreciate any insights anyone has to share.  Was diagnosed June 2011 with ILC, 2.5 cm, no nodes, ER and PR +, HER 2 negative. Am now four weeks post mastectomy and latiss dorsi reconstruction.

Oncotyping score was 17 so did not anticipate med oncologist recommending chemo - WRONG. Saw him Friday and he recommends 4 rounds of chemo (one every three weeks) given tumor size and nature of ILC. 

Have appt with another med oncologist this coming week for second opinion but would appreciate hearing from others.  Thanks. 

· Share on FacebookShare on Twitter

Comments

  • toomuch
    toomuch Member Posts: 901
    edited September 2011

    I was premenapausal and had Grade 2 ILC with positive nodes so I would not compare my case to yours. My oncotype was 12 and 3 MO still recommended chemo for me. The best thing that you can do is get a second and even 3rd opinion. What's most important is that you are comfortable and confident in the plan to you choose. If possible get one of the opinions at a NCI certified cancer center.

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2011

    Hi, dharris. I was premeno, age 38, no nodes, 2.7cm pleomorphic ILC, grade 2, Oncotype 18. Four oncs recommended chemo. I did CAFx6.

    · Share on FacebookShare on Twitter
  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited September 2011

    dharris,



    I have pretty much the same diagnosis stats as yours... Onc recommended TC x 4... We expected the oncotype to come back in the mid-range as far as recurrance. Mine came back as an 11 and I chose no chemo. He was comfortable with my decision, but only time will tell! Not all oncs are comfortable with with the new, more individually taylored treatment plans and want go strictly on size/age. EDITED to add: I was 46 when diagnosed.

    Since you are not comfortable with onc 1's recommendation, it's good that you are getting a second opinion.... I know I used to be worried that I might offend my doctor but, the good ones truly don't mind!



    Each person must decide for themselves which treatment path to follow but, just wanted to post to let you know, if you search on 'The new oncotype roll call' thread, there is a very detailed list of different oncotype scores and what each person decided to do! Also, lots of discussion....



    It may help to see what others did (it helped me)... But in the end, only YOU can choose what's right for you!



    Best advice I ever got, gather information, make decision that is feels right to you and, once that decision is made, do not second guess it!!



    I wish you all the best! Lots of great information and ladies on this site to help you!

    · Share on FacebookShare on Twitter
  • dixiebell
    dixiebell Member Posts: 280
    edited September 2011

    Hi well my oncotype was 5. my onc recommended chemo 3 opinions but I am choosing to do hormone therapy only. Before I found out I was node positive the first onc said no chemo if onc score was in the low to intermediate range. Most tend to error on the safe side in the intermediate range. Apparently for node positive FDA has not approved utilizing the oncotype score as the study group was only 367 pts. I think we all need to make our own decisions with the best information we have.

    · Share on FacebookShare on Twitter
  • Sereena
    Sereena Member Posts: 99
    edited September 2011

    Dixiebell, I had an oncotype score of 10 and my onc was firmly opposed to chemo as was a tumor board consisting of 9 oncs and the Chief Oncology at Dana Farber who also is a contributor to this very site. I was on the fence about it at first and after a lot of research decided on the AI's. Although I haven't looked back and questioned my decision because for me, it was the right one, I still questioned how the heck BC even came upon me. I am physically fit, work out every day and eat clean. That is my issue to try and get passed. I guess its anger.

    · Share on FacebookShare on Twitter
  • dixiebell
    dixiebell Member Posts: 280
    edited September 2011

    Serenna thank you so much - I am so so happy to hear your story. I did so much research and felt like I would be crazy to do the chemo with my score. All the long term side effects and different cancers the chemo can cause scared me. I feel extremely comfortable with my decision and am so glad to hear your board of oncs agree!!!!!!!

    · Share on FacebookShare on Twitter
  • dharris
    dharris Member Posts: 16
    edited September 2011

    Seaside Memories,  Thanks so much for your response - yes, very similar tumors.  Second oncologist rec'd no chemo, leaving me with decision.  I am leaning toward no chemo, given the potential complications/side effects.  As bad as the hair loss is, that side effect seems pretty minimal healthwise compared to the others.  I hope you are doing well,  dharris

    · Share on FacebookShare on Twitter
  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited September 2011

    Hi,

    I was dx ILC, Stage I, 0 nodes, Oncotydx 9 so I had lumpectomy, rads and tamoxifen.  4 years later I have ILC back in the same breast but this time it surfaced on the skin so it threw me into Stage III, ILC still with 0 nodes.  This time I did chemo for 20 weeks followed by bilateral Mast.  I only wish I would of had a mastectomy in 06 when I had it the first time.  ILC is super sneaky and tests miss it.  I had a perfect mammogram the day my BS said it was back. Mine is not genetic.  I had a very strong ER+ both times with PR-, HER-.  Good luck with your treatments!!

    Nancy

    · Share on FacebookShare on Twitter
  • dharris
    dharris Member Posts: 16
    edited September 2011

    Illinois Nancy,  I so appreciate your message and am really sorry to hear about your recurrence. Twenty weeks of chemo and the bilat mast sound so hard but you can't beat yourself up for your decision re: the lumpectomy.  You did the best you could with the info you had at the time, including the quite low oncotyping score.  In many ways, this all seems rather a crap shoot.  I'm still trying to figure out what to do - hard when the oncologists don't agree.  Your 20 weeks makes the nine weeks I'm hearing recommended sound like a cakewalk.

    Glad to hear about the negative nodes and the receptor status. You're right that ILC is super sneaky - "sneaky" was exactly the word my br surgeon used.  Thanks for your good wishes and I hope for all the best for you.    Dree

    · Share on FacebookShare on Twitter
  • Sereena
    Sereena Member Posts: 99
    edited September 2011

    My surgeon used the same term...."sneaky"....as mine did not show up on a mammogram either. I had an ultrasound for a very small lump which turned out to be nothing but a blessing because ILC was lurking in another area. Had I not had that ultrasound I probably would still not know as it didn't show up on the mammo. I also am begining to feel it is all a "crap shoot".............

    · Share on FacebookShare on Twitter
  • Joan811
    Joan811 Member Posts: 2,672
    edited September 2011
    This discussion shows how varied the onco opinions are, and how unpredictable recurrence can be.
    IllinoisNancy, it is likely that even if you had taken the chemo it would have returned.  You can't look back because we make the best decisions we can at the time.  Thoughts and hugs to you as you face this recurrence head on.
    My oncotype analysis is being done right now.  It sounds like the number is not going to be the decision-maker. 
    · Share on FacebookShare on Twitter
  • dixiebell
    dixiebell Member Posts: 280
    edited September 2011

    IllinoisNancy: Another lady on this site did it all chemo, rads and is on al's x2 years was node neg and just found out she has mets and then you hear of people who only did surgery on no recurrance so really like Joan811 said it is just so unpredictable and really bad luck. Thinking of you!!!

    · Share on FacebookShare on Twitter
  • sgreenarch
    sgreenarch Member Posts: 528
    edited September 2011

    Hi. I had similar stats. Oncotype 17. Three oncs from three different centers were adamently opposed to chemotherapy. I am on tamoxifen, Zometa and now monthly Lupron shots. Risks of chemotherapy outweighed the benefits. Tryin to exercise, eat right. Pray, too!

    Good luck, shari

    · Share on FacebookShare on Twitter
  • hlya
    hlya Member Posts: 484
    edited September 2011

    very interesting post.  Yeah I understand even chemo can not guarantee anything,  but just wondering how accurate Oncotype score is.

    · Share on FacebookShare on Twitter

Categories