DX with ILC had lumpectomy waiting for appt with MO

Options
Beaglelove
Beaglelove Member Posts: 29
edited May 2019 in Just Diagnosed

confused over what the current guidelines say regarding chemo for ILC stage 1B 0.7mm micromets in 1/2 nodes which were clinically cleared

· Share on FacebookShare on Twitter

Comments

  • Dani444
    Dani444 Member Posts: 522
    edited April 2019

    Hello, I am sorry that you need to be here but I think you will find a ton of support and information! I had ILC as you can see from my stats. I had two positive nodes one with extranodal extension. My MO sent off for the mammaprint test that came back low risk, so no chemo. Do you know if they sent it off for the Oncotype or mammaprint test? I believe that will be something they use to determine if chemo will be beneficial to your specific tumor. I hope you are recovering well from the lumpectomy!

    · Share on FacebookShare on Twitter
  • Beaglelove
    Beaglelove Member Posts: 29
    edited April 2019

    Thank you for replying I've never b on a forum so this is very new. I had surgery on April Fools Day and Friday BS called with Path report really didn't ask questions because all test showed no lymph node involvement and plan was lumpectomy then radiation and hormone blocker. No family history on father or mothers side for BC. I only know that it was 1.7 cm ER/PR positive and HR2 negative grade 2 I was stage 1 but assumed it is now stage 1b and they had to repeat dye twice to get it to show up in only 2 nodes only 1 had a 0.7 Micrometastasis. BS said he would set up appt wish MO and that chemo might now be a possibility but didn't say why. My brain shut down and I could think what to ask

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2019

    You need to ask for an oncotype test--ILC doesn't always respond to chemo as strongly as IDC so chemo is sometimes less effective on ILC. An oncotype will test the tumor to see how well it responds to chemo before you actually GET chemo--so that test can be really helpful.

    You are ER/PR+ ,which is really good, and HER2-, which is also good. You may be able to get away with taking an anti-hormonal drug and skip chemo, but you are still in the early stages of your dx and more will be done to figure out what tx is right for you. Please join us on the ILC boards and post any question you need to there. We've got amazing knowledgeable members that can help you.

    Hugs,

    Claire in AZ

    · Share on FacebookShare on Twitter
  • Beaglelove
    Beaglelove Member Posts: 29
    edited April 2019

    So nice to hear from you. I did ask for the Oncotype test and they had already sent it for testing which surprised me. I am glad for any advice offered

    · Share on FacebookShare on Twitter
  • Staceybee
    Staceybee Member Posts: 72
    edited April 2019

    Hi Beaglelove

    Your diagnosis sounds very similar to mine last year. I had a lumpectomy for 1.1cm ILC - and then was unhappy to learn that there was a 1mm micromet in 1/2 sentinel nodes that were removed. I convinced myself that I wanted to have chemo because I wanted to do everything I could to prevent recurrence, but after an Onctoype of 13 and a low-risk Mammaprint, the two oncologists I consulted did not recommend it. So I just had radiation and started an aromatase inhibitor with ovarian suppression and getting Zometa infusions on a 6-month basis, which maybe helps shave down risk of bone metastasis.

    The Oncotype result will be key to your decision. Also, when I was considering options many posted their experience in this thread, which I just bumped up: Micromets in node - chemo or no?

    https://community.breastcancer.org/forum/91/topics/865043?page=2#post_5384046


    · Share on FacebookShare on Twitter
  • Beaglelove
    Beaglelove Member Posts: 29
    edited April 2019

    I hope you are feeling well and appreciate your sharing. I hope I have a low score but I don't really know how the score is calculated. My instinct is to throw everything at it but I have read chemo doesn't work for everyone. I've read so much on Google which I'm trying to break the habit. that. Soback and forth survival rates and just want to survive a long time. We will have to share our journey as we g

    · Share on FacebookShare on Twitter
  • Beaglelove
    Beaglelove Member Posts: 29
    edited May 2019

    Finally got my Mammaprint back and it show low risk so no chemo and even though I had a very small micrometin 1 sentinel node RO only doing 20 whole breast sessions with 2 boosts. I am surprised no rads to axillary but he said it was so small and now removed that it would not benefit me. I am very confused

    · Share on FacebookShare on Twitter
  • edwards750
    edwards750 Member Posts: 3,761
    edited May 2019

    Beagle love - I had a micromet in my SN. I had a low Oncotype score of 11. I had 33 radiation treatments. 8 years out in August God willing.

    Diane


    · Share on FacebookShare on Twitter
  • Beaglelove
    Beaglelove Member Posts: 29
    edited May 2019

    Congratulations that is very encouraging to hea

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    Beaglelove, glad to hear you can forego chemo! Rads are very doable and tx is so much shorter than, say, 5 months of chemo and then 6 weeks of rads. Remember, Dr. Google is 1) notoriously unreliable, 2) uses very old information and research, pseudo-science, and complete untruths to try to get us to read his pages, and 3) some of the best and most reliable information is found through these discussion boards--some of our members have been studying and researching b.c. issues for years. Medical journal articles and some hospital sites are reliable, but check to make sure you are reading the most current research claims that are backed by hard science with a fairly large sampling--, and double-blind is best.

    There is a rads discussion board for when you begin tx, and I found it really, really helpful!

    Claire in AZ

    · Share on FacebookShare on Twitter
  • Beaglelove
    Beaglelove Member Posts: 29
    edited May 2019

    I appreciate any and all advice. I do hate the waiting but know it’s necessary RO is ver nice and empathetic but also encouraging and very hands on so far. I’m concerned about the SE but he said he will be checking my skin after each treatment and make recommendations as neces

    · Share on FacebookShare on Twitter

Categories