IDC + lymph node Premenopausal Oncotype score ? Need for chemo

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4pink101
4pink101 Member Posts: 45

I am 43 have IDC.. Had BMX with 1 positive sentinel node ALND additional 6 nodes removed all negative. Oncotype score 18 indicating no decrease in recurrence with chemo .. Not sure how to proceed given its been suggested by the MO as the standard of care. Anyone out there in a similar situation?

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  • snorkeler
    snorkeler Member Posts: 145
    edited July 2015

    I was 41 at diagnosis, IDC with a micromet in one node. Oncotype came back at 17, so MO did not recommend chemo for me. It's been a while, but I thought that 18 was the upper limit on the "low risk" range, so standard of care should be no chemo. Even if 18 is the beginning of the "intermediate" range, I don't think chemo is standard of care until the "high risk" range of 30 or more. You might want to check the current guidelines on standard of care at NCCN's website.

  • Marie711
    Marie711 Member Posts: 87
    edited July 2015

    I'm close except post menopause and oncotype of 10. This is my post from another thread:

    I'm not sure if I am relieved or not! Met with the MO. I thought since there was a micro met in one lymph node it would be automatic chemo. She said with my oncotype being only 10 that chemo would probably be over treating. She said a couple of years ago they probably would not have even discovered the micro met. Old treatment would have been to remove more lymph nodes to check for more positive ones but I think we are just going to monitor those. So, except for the pills (aromatase inhibitor) I guess my treatment is over! I feel like it's gambling and the stakes are my life! It's hard to not do every treatment available but there are risks in those too! I guess I won't know if this is the right decision for years.

  • labelle
    labelle Member Posts: 721
    edited July 2015

    My oncotype test was done using tissue from the needle biopsy. No one thought I would have any positive nodes given the small size of the tumor and its low grade. When surgery was done, one node was found to be positive. Both my OC and BS (at two different breast centers) agreed the one positive node did not trump my oncotype score of 11 and neither recommended chemo despite the positive node. I was premenopausal at the time of diagnosis at age 51.

  • FastWalker
    FastWalker Member Posts: 98
    edited July 2015

    I was recently in your very shoes. Not an easy decision. I had one positive lymph node (Macromet 8mm) and an Oncotype score of 12. The opinions of doctors were all over the place. (The consensus was that they were slightly in favor of chemo.) I was told I would get a 2-3% benefit at best -- possibly a 0% benefit -- and the final decision was left up to me. After many hours of careful consideration, I decided to forgo the chemo. Hopefully, I made the right decision. I am going to be put on 10 years of Tamoxifen. And currently, I am going for 33 treatments of radiation and my doctor is radiating the lymph nodes. (I had a lumpectomy so needed radiation anyway.) I was 46 at time of diagnosis and I am premenopausal. Get as many opinions as you need to feel comfortable making a decision. Good luck!!! . . . BTW, I was also told "standard of care" (according to current NCCN guidelines) is to give chemo. However, they are doing clinical studies right now to see which women (with 1-3 positive lymph nodes) can safely skip chemo. . . Tumor biology also comes into play. If I had anything aggressive about my tumor, I would have opted for chemo. (I did not - I am stage 2a, grade 1, highly ER+/highly PR+, Her2- and the tumor was only 1.4 cm.)

  • inks
    inks Member Posts: 746
    edited July 2015

    That's a tough decision. I think they refer to standard of care because of your age. But then if they were going to do chemo why did they order the oncotype anyways? I never even got the oncotype because they were set on chemo. Oncotype is based on postmenopausal women so some do not think it applies to premenoapusal women. Maybe a lighter chemo like TC only 4 times? Could you get a second opinion?

  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2015

    fastwalker, good for you. I can't imagine getting chemo at 12. Back in 09 I was almost alone in not getting chemo with a positive node. Now there are plenty of us.

  • superius
    superius Member Posts: 340
    edited July 2015

    I'm also at the point of making that decision. I had Mastectomy exactly 1 month ago (2.5cm), Lymph node -ve. ER & PR both +ve, HER2 was at 2, so they did the FISH, which is -ve.

    Had appointment 10days ago with Oncologist, and Oncotype score just came yesterday, it's at 27. Dr recommended Chemo (3 months of TC) because of my age (just turned 42 couple months ago) & the score is on the high end of it...

    I have a handful of MD friends from church, one already said (right after my bc diagnosis) that I "should do whatever it takes/ do whatever the Dr says," to make sure it doesn't come back. I'm going to talk to some others tomorrow.

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2015

    Welcome to you superiuschantgal! We are so glad that you reached out to our community. Here is a link to information on our site that discusses the Oncotype score. We hope that this is helpful. Stay connected here and let us know what you decide. The Mods

  • Srh242
    Srh242 Member Posts: 328
    edited July 2015

    Inks: oncotype took into consideration post menopausal and premenopausal tumor samples

  • inks
    inks Member Posts: 746
    edited July 2015

    Srh242 - Right back at you:

    Although Oncotype Dx can provide some prognostic information in select premenopausal women with lymph node-positive breast cancers, it is not used to guide treatment for these women. Researchers have not yet studied whether it can help predict chemotherapy benefit for lymph node-positive premenopausal breast cancers. - See more at: http://ww5.komen.org/BreastCancer/OncotypeDX.html#...

    I hate Komen but they sum it up nicely.

  • superius
    superius Member Posts: 340
    edited July 2015

    Decided on Chemo, emailed Dr Sunday & things are moving on the fast track! Treatment #1 is next Monday 7/27. & it will be all done by end of Sept!

    Talked to the my friends at church (I talk to more MD than priests on any given Sundays!!) :p Well... when your 2nd, 3rd, 4th, 5th, 6th & 7th opinion agreed with each other, you definitely should listen....

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2015

    Glad you were able to make a decision, superiuschantgal!

    You may want to join the July 2015 Chemo thread to meet and discuss with others as you go through chemo together. (There will surely be an August 2015 thread started soon!)

    We hope this helps and we look forward to hearing more about your journey, and helping you along the way!

    --the Mods

  • Giazuc
    Giazuc Member Posts: 44
    edited July 2015

    Hi there, my oncotype score came back at 12 even with 2 micromet node positive. My MO said no chemo for me. That was last year so hopefully I've made the right decision.


  • 4pink101
    4pink101 Member Posts: 45
    edited July 2015

    hi Giazuc- thanks for your reply. Are you now taking tamoxifen? If so, how is that going? Several MO agreed no chemo with strong hormonal therapy.

  • hyphencollins
    hyphencollins Member Posts: 109
    edited July 2015

    Hi, Just chiming in. I had chemo with one pos node because my score was intermediate. However, had it come back low, my MO wouldn't have recommended chemo. She said with intermediate score she couldnt not recommend at this point but she suspected it was overtreatment. I was 40 and premenopausal.

    Btw, for me Tamoxifen has been fine. Best wishes with everything.

  • 4pink101
    4pink101 Member Posts: 45
    edited July 2015

    hi hyphencollins- thanks for the information! That was very helpful. How did you handle radiation and have you had reconstruction yet

  • superius
    superius Member Posts: 340
    edited July 2015

    Yeah, my score was 27. so it's at the high end of the grey zone. That's why my Dr suggested doing chemo. had it be toward the low end, then probably not...

  • Giazuc
    Giazuc Member Posts: 44
    edited July 2015

    Hi 4pink101, yes I'm taking tamoxifen for 5 or maybe 10 years. So far I've been ok with tamoxifen, the only thing is I haven't been getting my period. I've menstruated only 3 times since starting tamoxifen June of last year 2014. I've been going to my gynaecologist for ultrasounds and I have a little endometrial thickening. I've had 2 endometrial biopsies so far in the last year. This is my only issuewith tamoxifen.

  • 4pink101
    4pink101 Member Posts: 45
    edited July 2015

    Hi Giazuc .. Thanks so much for the info! Did they recommend RO for you? I had immediate reconstruction and they are strongly recommending radiation as I had extensive DCIS with my IDC but I'm extremely concerned with the SE to the reconstruction among other SE. I'm so confused and I just don't know what to do.

    Hope things improve on your end with the tamoxifen!

  • Giazuc
    Giazuc Member Posts: 44
    edited July 2015

    Hi 4pink101, no they didn't recommend RO. I also got immediate reconstruction but wasn't offered RO they said because I had a double mastectomy. I'm not sure what to tell you regarding this except I myself worry about recurrence. Especially now I have a bit of thickening happening on my implant. I had an ultrasound and the radiologist told me not to worry it isn't malignant but they are keeping an eye on it. They've already scheduled me for my second ultrasound in September. Hope that helps

  • 4pink101
    4pink101 Member Posts: 45
    edited July 2015

    Giazuc- thanks for the reply. Do you mind me asking what your surgical margins were. They told me they were recommending RO due to my young age, positive node and close margins (1mm) RO brings its own set of SE and I'm trying to weigh the risks/benefits .. They are really pressuring me and it's starting to upset me a bit.

  • Giazuc
    Giazuc Member Posts: 44
    edited July 2015

    Hi4pink101, my margins were 4mm. But I don't really understand what it means to tell you the truth.

  • 4pink101
    4pink101 Member Posts: 45
    edited August 2015

    hi Giazuc

    Well, I picked up the tamoxifen last night but haven't dared to take it yet. Are you finding the SE ok? There are horror stories out there- people having a horrible time, hair falling out in clumps- bald spots- miserable joint aches- please give me some good news. I have to find strength and take these pills but I'm terrified. Were you?

  • Giazuc
    Giazuc Member Posts: 44
    edited August 2015

    Hi 4pink101,

    All I can tell you is that I feel it's important for us to take the tamoxifen given our diagnosis. I'm sorry but you got me in a bad time with the experience of tamoxifen. Yesterday I had another endometrial biopsy because of thickened lining as well as they found a few cysts on both my ovaries with one that's more concerning because it's a complex cyst. Of course I'm freaking out now. I'm going today to a lab to get blood work done for the CA 125 test. I'm sorry but I really don't know what to say to make you feel better about taking tamoxifen except that we need to take it despite these side effects. I'm now trying to figure out if I should get a hysterectomy.

    Good luck and a big hug to you

  • 4pink101
    4pink101 Member Posts: 45
    edited August 2015

    oh my gosh! I'm so sorry to hear all of this! My heart goes out to you. Sending you a big hug. You're not alone. I'm here if you need to vent

  • Giazuc
    Giazuc Member Posts: 44
    edited August 2015

    Thank you 4pink101

  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2015

    Pink I didn't have tamoxifen but anastrozole then exemestane. My hair is good thank God. My aching ramped up after 1 year on anastrozole. I am tired and have general aches on exemestane. Remember you can always stop the pills.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited August 2015

    Pink - I've been on tamoxifen for 6 months now. I have hot flashes and that's all. I did chemo and my hair has come back better than before while on tamoxifen (I've been taking biotin too). Now who's to say what's to come, but so far so good. There are a lot of ladies that have taken tamoxifen with few side effects or none at all. They just don't post. We tend to hear from those having difficulty because they are looking for some answers.

    Nancy

  • 4pink101
    4pink101 Member Posts: 45
    edited August 2015

    thanks Nancy. I think I'm so nervous about the tamoxifen because I'm opting for that treatment over chemo (as Oncotype showed no difference in recurrence rate). Thank you for your input. Hopefully the side effects for me will also be minimal. How much biotin do you take? I've read that can help with the changes

  • Giazuc
    Giazuc Member Posts: 44
    edited August 2015

    Hi 4pink101,

    I can tell you that aside from these ovarian complex cysts, I've been doing ok on tamoxifen. I think I need to learn to handle some challenges that may pop up and then it will work out fine. I haven't lost any hair and I haven't gained weight. Except for some joint pain and constipation I'm doing ok.i wouldn't be too scared. I also didn't do chemotherapy because of my low oncotype score so that's why I feel I need to take the tamoxifen.

    Sorry if I scared you before, I really didn't mean to.

    :

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