Oncotype test - too small IDC to test?

Options
kimag
kimag Member Posts: 114
edited August 2018 in Just Diagnosed

Hi I was recently diagnosed with IDC 1a ER+, invasive tumor was 2.5 mm and I was told by oncologist that no chemo needed and Tamoxifen is optional for me - that I can decide yes or no... I asked him for Oncotype test to help me decide but he said that with 2.5mm IDC there is not enough material to do the test. Does it sound right? Has anybody had that test done with similar size IDC?

Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    Hi kimag - You might check with bethq, I think she had something similar. I hope all your treatment goes well. Take care. 

  • smo23915
    smo23915 Member Posts: 165
    edited August 2014

    Hi Kimag,

    My spot was 2mm and I had second opinions at MD Anderson, John Hopkins and UofM.  They all told me too small for the test, and they left the use of Tamoxifen up to me.  They told me the benefits of Tamoxifen were maybe 1-2%.  I had Lobular C., ER/PR+, Her2-, and no lymph node involvement.  But I did decide for a BLMX for my own peace of mind.  Are you going to take Tamoxifen?

    Sharon

  • kimag
    kimag Member Posts: 114
    edited August 2014

    Farmerlucy- thanks

    Sharon - I do not know yet would I take it or not... I had high radiation to the chest 18 years ago, my BC was induced by that - opted for BMX right prophylactic. On one side I think that since it was mostly radiation induced cancer and there is no breast left just maybe 2% breast cells and that risk and benefits equals I do not have to take it, then I think well those 2% breast cells left were radiated as well so who knows if would not grow again... and maybe maybe my risk is higher then doc thinks and I should take it...

    What about you are taking Tamoxifen?

  • mel147
    mel147 Member Posts: 479
    edited August 2014

    kimag - mel147 here from the July 2014 thread...I was just going to PM you and noticed you had started this thread so I'm posting on this one.  I am in a very similar situation regarding the Tamoxifen.  I had four small invasive tumors - largest was 3mm and the others were 1.5 mm and less.  My oncologist and I discussed Tamoxifen but he is thinking that I might not tolerate it very well since I have reacted negatively in the past to hormones.  I tend to agree with him and am also worried about the possibility of blood clots since I have some bad varicose veins in my legs.  The problem is, I am wondering if this is the right move or not.  I was so excited that I had no positive lymph nodes and clear margins and I thought I was in the clear, but then I read how the cells can travel through the blood stream and pop up later after they have metastisized in other places like your bones.  That scares me a lot!!  I have been reading so much on these boards trying to see what other people are doing and I do see others with my same stats and they are taking the Tamoxifen.  My MO said I was in a grey area and it would be difficult to guess my risk but he was saying 5-10% as a range but said it was probably more like 5%.  He then said if I had a 6% risk then the Tamoxifen would reduce my risk by 50% and it would then be 3%.  I wish they could tell us more concrete info, but I know they can't.  I feel so fortunate that my cancer was small and all removed, but I am still worried about the future and want to make the right choice.

  • smo23915
    smo23915 Member Posts: 165
    edited August 2014

    I have been on Tam. for 2 years now even though I was told by many different MO it was up to me.  John Hopkins told me there really isn't good data for small tumors so they have to extrapolate data.  I have been told many times I have been cured (if there is such a thing)  When I was at JH, I met with Lilly the nurse who does the Ask the Expert on the JH breast cancer boards.  She said to do the happy dance and not to worry, also she would not take Tamoxifen, in my situation.  She is a 2 time BC survivor so she understands all this.

    BUT I am now having some SE such as hair loss, it has destroyed my nails (thats ok) but also Cataracts.  My gynecologist who is also an MO told me I am being over treated.  I had 3 uterine biopsy's.  Grr what to do!!

    I was also told 2 years is better than none, no data for year 3-5 and 5 is best.  I also have osteoporosis and was told by many docs the Tam.  should help since I am post menopausal.  It did not I still lost density and now am on Prolia.  The one reason I stayed on it was for my bones but now I am really afraid to stop it, even with only a 1-2% chance of recurrence.  My BS also told me I did not need it so I also am not sure what is the right decision.  And the more second opinons- always the same answer.

    Sharon

  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2014

    I have been on Tamoxifen for 31/2 years. It is no walk in the park but more of a necessary evil. I have IDC Stage 11, Grade 1 BC. My tumor was larger enough to have the Oncotype test done. My score was 11. Recurrence rate is 8% but that includes 5 years of Tamoxifen. I had a lumpectomy and 33 Rads treatments. 

    If my dr told me it was optional I would take it. A drug that can reduce the chance of a recurrence and its optional? Sometimes I think the drs are too blasé about treatment plans. I know they have over treated women for years but no need to go too far the other direction either. 

    It's an individual's choice of course. Just be sure you don't look back and say what if. Get a second opinion if you have to. 

    Diane 

  • Dancermom1999
    Dancermom1999 Member Posts: 122
    edited August 2014

    Hi Kimag:

    My IDC was 2.6 mm and I too was told by my Onc that it was too small to test.  I had my bi lateral in January of this year and on this Thursday I will have the final procedure in my reconstruction process.  Very pleased with my results.  I am on Tamoxifen but will change to an AI when post menopausal. 

  • theresa45
    theresa45 Member Posts: 314
    edited August 2014

    My tumor was 6mm, and I was able to have the OncotypeDX test performed on the tissue.  There was some discussion as to whether my tumor was large enough for the OncotypeDX test.  If you want to confirm that your tumor is too small for the OncotypeDX test, I would call Genomic Health directly, the company that performs the OncotypeDX test, to ask how large a tissue sample they need.  They had a very helpful patient hotline...

  • kimag
    kimag Member Posts: 114
    edited August 2014

    Ladies thank you so much for your posts - it does seem like there have to be enough tumor tissue to test it... 

    Diane - I think that once facing heath issue and treatment there always be "what if.." Yes I think about it if I have mets later or recurrence how would I face the question what if I would have taken Tamoxifen when offered... but there is also other side - if I develop uterus cancer or my heart will get worst  or will end up with pulmonary embolism due to blood clot I will also ask what if I didn't take Tamoxifen in the past... and the risk for both versions according to the oncologist is same in my case that is why he said he leaves it to me - and as we all know having a choice is sometimes a curse - should he just said - your next step is taking hormone for such and such time I would probably not think about it as much.

    Of course not everybody has SE from Tamoxifen or not all SE are equally as bad. But I cannot forget the fact that I have BC as a late side effect of my previous treatment - radiation, that my echo of the heart showed recently borderline low ejection fraction which is linked to one of the ingredients of my chemo in the past. So when the oncologist is not convinced I should take the drug it makes me wonder do I really need it would it not cause more issues. That is why I wanted to support my decision either way with Oncotype test and hear back from other Ladies if someone has it done with small IDC

  • kimag
    kimag Member Posts: 114
    edited August 2014

    smo23915 would you mind sharing your DX? how big was your IDC have you had mastectomy? I have not had second opinion nor hae I asked for one yet  I was told that each case is seen by few oncologist before decision is made as a group, so even if I meet with one oncologist after all the proposed treatment option has been "second opinioned" already

  • smo23915
    smo23915 Member Posts: 165
    edited August 2014

    kimag my tumor was 2mm, Er/Pr+, Her2-.  No lymph nodes nor lymphatic involvement.  I had ILC and was given the choice of radiation or MX.  I chose Bilateral MX for my peace of mind.

    I was diagnosed 2 years ago.

  • kimag
    kimag Member Posts: 114
    edited August 2014

    thanks smo23915, It sounds very similar except I have/had (still cannot decided how to frame it) IDC, could not have radiation so MX was the only choice,decided on BMX for peace of mind as well.

  • kathy1925
    kathy1925 Member Posts: 34
    edited August 2014

    hi, my tumor was 4mm and I had the oncotype test performed.

  • MiMi11
    MiMi11 Member Posts: 9
    edited August 2014

    I am waiting on the test results of my Oncotype DX & am scared that the numbers will come back high & will have to have chemo! What is the highest number I can have and not need chemo? I am PR/ER+ HR-. Thanks for any info in advance!

  • mel147
    mel147 Member Posts: 479
    edited August 2014

    MiMi11 - I haven't had the test, so I don't know specifics about the numbers.  I hope your results will come back soon and that they are low - the waiting is difficult!  Did you have to ask your doctor to run the test or did they do it for yo automatically?  I am wondering why some people have it done and others don't.  It seems like it should be an automatic thing.  Thanks!

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    Mimi - the intermediate range starts at 18 and around there docs start talking about the benefits of chemo. 

    Mel - my tumor was 1.1 cm, my doc discussed it and asked if I wanted it.  I believe that generally it is for node negative invasion cancers under 2 cm, but I have seen exceptions on these boards (i.e. 1 node, bigger than 2 cm). There is a newer test for DCIS some docs are using. I'm not sure about a low end cutoff for IDC. You can read more about it at  http://breast-cancer.oncotypedx.com/en-US The professional area has some very interesting graphs.

  • thinkpink4ever
    thinkpink4ever Member Posts: 205
    edited August 2014

    I just received my oncotype results today.  It's 30, so it looks as if chemo is in my future.  I did not have chemo during my first battle in 2001, and the oncotype test was not being done back then.  I have an appointment with my MO next week to discuss details.  Decisions, decisions, decisions....

    One love,

    tp4ever 

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited August 2014

    ThinkPink: from your signature line, you state that you had DCIS in 2001. I'm not sure when the OncotypeDx test was implemented, but if you had pure DCIS, there would be no recommendation for chemo. I also see that your current IDC diagnosis is ER+/PR- and I think that's at least a pretty good part of why your score was high. PR- almost always adds to the risk as several research studies find hormone therapy to be a little less effective than if you were PR+. 

    I hope chemo is gentle for you.

    Best wishes.

  • thinkpink4ever
    thinkpink4ever Member Posts: 205
    edited August 2014

    lintrollerderby, I need to change that info on my first DX.  It was initially thought to be in situ, but the path report from my first surgery came back as invasive, which is why I had the second surgery to do a re-excision of margins and sentinel node biopsy.

    I wasn't aware of the PR- risk - that's interesting.  But what does the effectiveness of the hormone therapy have to do with the genomic testing results?  I'm still trying to make sense of all this stuff...

    Thanks for the gentle chemo wishes.  I also wish the same...

    One love,

    tp4ever 

  • kimag
    kimag Member Posts: 114
    edited August 2014

    Thinkpink4ever - I am sorry to hear about your Oncotype result and chemo future... I hope it all go smooth and easy with chemo! Can I ask how long have you been taking Femara? It seems you started it 5 years after Tamoxifen. I wish I could have Oncotype test done... keep hearing the tumor too small. I still do not know what to do in regards to taking Tamoxifen or not... I guess I will wait for cardio consultation

  • thinkpink4ever
    thinkpink4ever Member Posts: 205
    edited August 2014

    kimag, I was diagnosed in Jan 2001, and after my radiation treatment , I took Tamoxifen from June 2001-June 2006.  I started the Femara right after that.  I took the Femara for two years after my 5 year Tamoxifen regimen, so it was a total of 7 years of hormonal therapy after my first diagnosis.  I hope that makes sense.  And I honestly believe that the oral drugs kept the cancer at bay until it recurred and I was diagnosed again in May of this year!  It was worth the SEs - I got to watch my daughter grow up into the beautiful young lady that she is today!

    One love,

    tp4ever

  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited August 2014

    mmm....this is all so confusing. I was told prior to surgery that the tumor was  less than a 1 cm

     I was scheduled for a lumpectomy, sentinal node. If the node was clear, pathology would do a oncotypeDX.

    If the node was involved chemo would be indicated regardless of the Oncotype.

    At no time was it ever said that small tumors couldn't benefit from OncotypeDX.

     It turned out to be 3.2 cm. I had the oncotypeDX, it cam back low 12 so no chemo.

     However, everywhere I read the general treatment is chemo is always given if its StageII . So tuesday Im going to bigger cancer instittute for a 2nd opinion. I want so much that they all agree because I really dont want chemo but I also dont want recurrance.

    There was never the option of NOT taking hormone therapy.

  • Dancermom1999
    Dancermom1999 Member Posts: 122
    edited August 2014

    I was told by my oncologist that any tumor under 3mm cannot get an accurate result.  They do the onco test 3 times and ideally they need 1mm per test.     I have seen on the site where some women with tumors at 4mm have the onco test.  NCCN guidelines do not recommend chemo or the onco for tumors under 5mm.  You can register on the site at:  www.nccn.com.  Great information on the site.

  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2014

    Raidergirl- Stage II is not automatic chemo; neither is lymph node involvement. The Oncotype test is recommended when the ONC is unsure about treatment, I had the test; my score was 11. No chemo based on that score. My tumor was Grade 1. Higher grades may warrant chemo. Again your ONC makes the call. Of course you can choose not to agree with your ONC. Your decision ultimately, your life. 12 is a low score. 

    Diane 

  • SailingWind
    SailingWind Member Posts: 110
    edited August 2014

    no chemo for me. Stage 2a grade 2, 2.8 cm, ER 100% PR 99%, Her-, Ki-67 19, node clear clear margins, oncotype 17 only doing rad.   67 yr. ( For some reason I have been saying 68!) 

    In rads now, will take Femara

  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    All: My tumor is 2mm, and I'm wondering if my onc -- who said he'd send tissue off Monday for test -- might come back and say it's too small for accurate result? If so, what usually happens next....chemo is off the table, and you move forward with radiation? I.e., the tumor is so small that it's nearly certain chemo would be of very little benefit (as indicated by NCCN guidelines)?

    Or -- depending on path report/tumor biology, is it wise to get another opinion, since you don't know what recurrence risk the test might have indicated? Everything on my path report pretty good except PR- status, which it seems confers higher recurrence risk. Don't know if this higher risk is independent of tumor size and other variables.

    Anyone with small tumor had the test done and were told that results were inaccurate or inconslusive? Do they charge the full amount if this happens?

  • Lilac17
    Lilac17 Member Posts: 31
    edited August 2018

    I had a 3mm IDC removed during the core needle biopsy. My surgeon said I didn’t qualify. But according to your post, there is enough to test. How long are our specimens kept? My biopsy was done at the end of April and here we are in August

Categories