ILC and Oncotype Wait

Rav2017
Rav2017 Member Posts: 17

I was diagnosed with ILC Oct 2017. I had lumpectomy on Nov 15, left breast 2 cm, negative nodes, er/pr+, her-. Grade 2 barely stage 2... breast surgeon said excellent path report, and recomends accelerated radiation, and pills, but sent me on to MO....she said almost same thing, but sent off for oncotype test, which I was expecting...she said she is expecting low score, said 20% chance of chemo, but wanted to prepare me. This was 4 days ago, and now I have become very anxious! This was found on screening mammogram, and now aside from this I am very healthy 60 year old. What should I be thinking at this point in time

Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2017

    Make sure you understand the risks associated with various treatments. I was told no permanent effects from AI drugs. That turned out not to be true. Also chemo was down played. I did not have to have radiation because I did a mastectomy.

    Remember they are quoting standard of care, they want to focus of killing and keeping cancer away. But you are the one who decides. They pressed me to do chemo since my oncodx was 34. I didn't do it and I am glad I didn't. I did the AI drugs thinking it won't effect my overall health, well it did. Not sure what I would have done if I turned back the clock.

    Anyway I am over 6 years out no cancer, I have ringing in my ear and some arthritis. I feel so much older, befor my tx I didn't have any aches or pains.

    Read through the treads and ask questions. Remember there is a standard but you will find treatmemt varies. Choose what you think is right.

  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    Did you have negative nodes?

  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    Did you have negative nodes

  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2017

    Hi

    sorry you have to wait--but getting the oncotype will help you make decisions and give you peace of mind. I had to wait over the holidays for my oncotype test (9 years ago) and it was torture. And, as I suspected, I came out in the "gray area" which at that time was about a 26 or somewhere around there. I was young and was able to tolerate chemo reasonably well. You don't know enough right now and you should remember, you get to make the choice. The oncotype is just one more piece of information that can help you decide on treatment. Lots of people think that the AI's are enough with radiation for ILC--- but it really does depend on YOUR tumor and its properties--- At the time, my kids were young and I knew I would doe everything to give myself every chance to never have to go through this again, but there are no guarantees. In the end, I made the chemo decision because I knew I would sleep better at night and I have, every night for the past 9 years, so it was a good decision for me.

    I would suggest you wait until you get the results then you will be able to make a decision that will work for you....

    good luck


  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2017

    Hi Rav. I'm 59 and in a similar situation to you. The Oncotype DX test is an important piece of the puzzle in treatment planning, but so are tumor size, surgical margins, lymph node involvement, age, etc. In my case I ended up with an Oncotype DX score of 18, and happily chose no chemo. My MO and RO were pretty much on the "no chemo" side even before the test results came in, so it sounds like you can try to relax right now and hope for the best. I know that is hard! But think positive thoughts and feel free to ask additional questions here.

    BTW, I actually had two tumors quite near each other because of the "mixed histology" of ILC as well as IDC. Still both of the MOs I consulted were comfortable with no chemo.


  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    I am still waiting for results of oncotype, and becoming more anxious! It seems like ILC does not usually have a high score, is this true or false...you read so much on line, which is making me question the opinions of my medical team.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited December 2017

    It is true, Rav. I agree with your onc that your chance of your Oncotype indicating the need for chemo is low. ILC usually gets a low or intermediate Oncotype score. If you look at your pathology report, and it has both high ER and high PR, along with Her2 negative, those are good indications that Oncotype will not be high. Also, grade 2 is better than grade 3. (IF they had told you it was pleomorphic ILC, which is less common, then there might be more concern.)

    Your Oncotype score (recurrence risk) will assume that you will be taking the anti-estrogen pills (tamoxifen or an aromatase inhibitor). Not taking them would mean a higher risk of recurrence. Ask your onc what the risk vs. benefit would be for you personally. You will read of people who have a difficult time with these pills, but please realize that there are many women who are doing fine, and they are less likely to post, because things are going well. You can give the pills a try and see how you feel.

    Waiting for test results is awful. My advice is be kind to yourself and find some distraction.

    If you want to read some research to support my comments, here are a couple links:

    https://www.sciencedirect.com/science/article/pii/...

    http://onlinelibrary.wiley.com/doi/10.1111/tbj.124...




  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    Much thanks for posting these articles, had not seen them.

    It is single focus ilc, Er/pr strongly positive, her- neg sentinel node, clean margins, BS said excellent report and prognosis...but then MO talked mentioned chemo, with oncotype as standard of care, and one week later, no results...

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited December 2017

    It takes about two weeks from the time the company receives the tissue for the doctor to get results, according to the Genomic Health (Oncotype company) web site. I think your doctor is just being honest to say he/she can't tell you for sure until the results come back, but he/she thinks chances are your score will not be high enough for chemo.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited December 2017

    Rav:

    My stats are pretty close to yours. My tumor 1.8cm -- see the rest below in my signature. Oncotype and KI low, as MO expected, so no chemo. However, I would have done it if suggested. What your MO has told you to date is on target with what I know or was told.

    Hang in there and take a breath when you can. The hardest time is waiting for results.

    Hugs to you.

  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    Thanks much.....2 weeks....yikes

  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    Tks for the reply.....my ki i think is around 20, which surgeon said is slow growing and non agressive.....no one has seemed to be worried about that score....hope you are doing well

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited December 2017

    Yeah...the KI is hotly debated. Not sure how much faith anyone has in it. <?>

    I think my Oncotype also took right about 2 weeks. You're almost there!

  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    i read on the Johns Hopkins site the average kl is 25 the most reported number, and they said it was not worrisom And not every institution is using it..

  • beach2beach
    beach2beach Member Posts: 996
    edited December 2017

    Hi Rav2017,

    My pathology did not have a KI score on it. My Oncotype came back as a 9. It took almost a full two weeks for the results to come back. The waiting, as always, stinks. It's worth the wait.

    I was also highly ER and PR. They can never say never, until that report comes back. My BS just kept saying with any luck it will come back low and you will only need hormonal therapy.

  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    Interesting, I just read my biopsy and pathology report, omly biosy report has my KI number on it.....

    Any reason for that?

  • windingshores
    windingshores Member Posts: 704
    edited December 2017

    I would try to stop rereading and googling and finding distraction for the next week because the Oncotype really will help determine your course. 

    The idea of "throwing everything you can at the cancer" is outmoded these days, because Oncotype not only tells you whether chemo is needed but if it would be helpful at all.

    ki67% is used in the Oncotype but is only one of several (I forget, 5?) proliferative factors included.


  • Rav2017
    Rav2017 Member Posts: 17
    edited December 2017

    oncotype score came back at 12! No chemo, on to radiation....I feel very fortunate and blessed

  • gkbuser
    gkbuser Member Posts: 348
    edited December 2017

    Rav, congrats! That is low so great! I had a hard time waiting too, but I am glad I did it and got a low score. I was afraid that if I didn't have it, I would have always wondered and worried. Tell yourself it is gone for good! Have a Merry Christmas!

  • Dodgerick
    Dodgerick Member Posts: 72
    edited June 2018

    I'm looking for another breast cancer survivor who has had ILC with lymph node involvement, has had the ONCOTYPE DX and scored low enough to skip chemotherapy. I REALLY need some reassurance, PLEASE! It's driving me crazy!!! After being diagnosed on November 29, 2017 with ILC and DCIS in my right breast, I had bilateral mastectomies on January 6, 2018. I decided that with a 40% chance of cancer also showing up in my left breast, my best bet would be to have them both removed...as a side note, the pathology reports shows they found LCIS in my left breast! Glad we opted for BMX! The 2cm tumor was ER+, PR+, and HER-2 negative. My surgeon hadn't anticipated lymph node involvement and so she just removed the sentinel lobe. On my followup appointment on February 7, 2018 my surgeon told me that the pathology report found the sentinel lymph node she had removed was involved by cancer with a 1.9cm extracapsular extension present. In spite of lymph node involvement, my oncologist suggested the ONCOTYPE DX to determine if I would benefit by chemotherapy. About a month later my ONCOTYPE DX came back with a score of 17, and my oncologist determined chemotherapy would not be necessary or add significant benefit in this situation. I was so excited that I wouldn't have chemo! On April 25, 2018 I started 5 weeks of radiation to my chest wall and regional lymph nodes, I completed radiation with minimal side effects on May 31, 2018. I'm looking for encouraging news from other breast cancer survivors of ILC and DCIS with lymph node involvement, that have also skipped chemotherapy....PLEASE?

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    I hope we see some others soon, but it is a busy time of the year.

  • Rav2017
    Rav2017 Member Posts: 17
    edited June 2018

    No lymph node involvment, but wanted to offer you support. I started ths thread, had onco score of 12, did 21 rads, of which 5 were boost, have bern taking letrazole since febuary, with minimal side effects.

    Read the latest report that came out a few weeks ago, on oncotype scoring

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