Oncotype results

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  • Rocket
    Rocket Member Posts: 1,197
    edited June 2010

    Hang in there Beanius.  You can do this!  You have a very positive attitude. 

     I'm over halfway through the rads, and then I have a hysterectomy/oophorectomy scheduled for August 11th.  After that I'll be done with invasive procedures.  I'm planning a wonderful vacation for the fall/winter.

  • Beanius
    Beanius Member Posts: 1,697
    edited June 2010
    Rocket - so glad to hear you're getting through it. That is great to have a wonderful vacation to look forward to in fall/winter. That's just around the corner.Smile
  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited June 2010

    Navygirl,I did not know the Oncotype test could be used with HER postive cancer.I wish I had known this when I was diagnosed.I thought the HER status meant chemo was a must.

  • Rocket
    Rocket Member Posts: 1,197
    edited June 2010

    My big concern regarding the Oncotype test is the fact that I had three tumors and they oncotyped only one.  I was told that they were histologically similar so that should mean that the oncotype would be similar for all three.  I'm not convinced however.  My tumors were multi-centric meaning that they originated separately and simultaneously rather than one tumor spreading to another and then another.  So, I've tried my best to shove the statistics out of my mind and recognize that I have treated this cancer as aggressively as I know how.  If it comes back, no one will be able to say I didn't do everything possible to eradicate it.

  • u32374
    u32374 Member Posts: 68
    edited June 2010

    After my DX my Drs and I thought I'd only have to have a lumpectomy, radiation and take arimidex. Then my score from the Oncotype test came back 25/26.  All the Docs thought I should do chemo and I went along for the ride.  Decided I could do it if it meant I would sleep better. 

    Read everything this site recommended to be prepared and it was doable.  The nasty mouth taste was the only thing I couldn't dose with something or get rid of fast enough and now believe it or not I miss taking my chemo naps.

    I had T/C X 6, wish though it could have been x4 instead as I did really drag the last two treatments.  You'll manage what ever you need to and this forum will help tremendously.  Good luck.

  • Mah
    Mah Member Posts: 10
    edited June 2010

    Hi Julia 2,

    I read somewhere that the oncotype dx test can be affected by other factors.  In one case the tumor sample included granulocytes that were next to the tumor.  Granulocytes are apparently rapidly dividing, and the whole sample is put into the mix being tested.  Well apparently this falsely raised the oncotype dx result.  You would need to check with the pathologist who sent the sample.  I can't say that this is what happened.  Some people do get very different scores anyhow.  I know nothing about medical stuff, I just recall reading it when I was researching the test to see if I would want it. 

    Mine came back today, very close to what was expected by onc. so I am not questioning it.

    Hope that this helps.

  • jankell7
    jankell7 Member Posts: 7
    edited June 2010

    Not sure how reliable those oncotype tests are. I had mine done five years ago when it was fairly new (and not covered by insurance). Mine was a 16 so I didn't have chemo or radiation. I had had a double mastectomy 5 years ago (one side prophylactic) and was told that would do it. Six weeks ago (2 months short of 5 year anniversary) I found a lump. So, i just had a lumpectomy from what tissue was left and have been told I need radiation and to be on Femara for the rest of my life. I'm really angry and am looking for a new oncologist. Who prescribes Femara for the rest of your life!?

  • Mah
    Mah Member Posts: 10
    edited June 2010

    Hi Janke117

    I would be angry too after 5 years free, thinking you are safe and only to have it come back. I am only newly diagnosed and completed surgery so am hoping for the best.

    I am a bit unclear, did you have hormonal therapy after the surgery? I gather you mean that the cancer grew in the small amount of breast tissue remaining after surgery? Radiation will kill any local cancer cells and Femara to hold any that got away seems OK.

    The alternative is radiation, chemotherapy probably plus Femara.  You need to avoid any recurrence outside the breast. Metastases are bad outside the breast. 

    Your survival is important.  I had 3 opinions on my treatment, and I think that it is a good idea to seek other opinions, and whatever you decide, you will have more confidence in the result.

    I wish you the best in whatever choice you make.

  • jankell7
    jankell7 Member Posts: 7
    edited June 2010

    Mah:

    I was supposed to take tamoxifen for 5 years after the mastectomy, but I hated the side effects and stopped taking it after about 6 months. Guess I really thought with clear margins and no lymph nodes involved that it was gone. Just shows how little we really know about this disease. I'm starting the Femara slowly--only 1/2 pill a day--until I see how it affects me. I'm working out or walking everyday since I already have osteoporosis and am trying to protect my bones. Femara is a bone killer from what I read. Being told I have to take it forever just really took the wind out of my sails since Tamoxifen affected me so badly. So far, so good though. Might try a second opinion. I wish you the best in your journey.

  • Mah
    Mah Member Posts: 10
    edited June 2010

    Hi Janke 117

    I understand that VitD and Calcium supplements help with the bone thing. Won't Hurt. In the other sites on hormone therapy, they say changing the time you have the tablet affects the side effects or when they happen.  As well as maybe after eating.  I have now had 3 Arimidex tablets (in the morning after breakfast), no side effects but it is probably still too early.  At least I haven't had an allergic reaction.  I would rather have a broken bone and a hip replacement than metastatic cancer.

    Maybe move up to 3/4 of a tablet then a full tablet.  You will be there before you know it. 

    You never know, this new vaccine that they are trialling at the end of next year may really work and change the playing field for breast cancer in years to come, and provide a template for the development of treatment of other cancers. You may not need to be on Tamoxifen for the rest of your life.

  • kmom
    kmom Member Posts: 4
    edited June 2010

    Hi Jankell7,

    If you have osteoporosis, have you thought about taking bisphosphonates? According to my oncologist, they are indicated for osteoporosis, and the clinical trials show that for patients with breast cancer, it also seems to reduce the incidence of metastasis not only in the bone, but also liver and lung.

  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    Jankell7--The women who provided the database for the oncotype test had all taken tamox for five years. If a patient does not do this, the risk of recurrence is increased and the score no longer applies.

  • otter
    otter Member Posts: 6,099
    edited June 2010

    Seabee, thanks for adding that clarification about interpretation of Oncotype DX scores.  You are right -- the "10-year risk of distant recurrence" associated with each score applies to women who have taken tamoxifen for 5 years.  It's assumed by oncologists that the scores would apply similarly in women who are taking AI's.

    Most of us understand that the risk of recurrence is low, and the absolute benefit of chemotherapy is low or nil, when the Oncotype DX score is low.  And, vice versa -- a high Oncotype DX score is associated with a high recurrence risk but a greater benefit from chemotherapy. 

    What I think many women do not realize is that, while chemo works better if the Oncotype DX score is high, the opposite appears to be is true for tamoxifen.  Tamoxifen provides a greater benefit (absolute decrease in recurrence risk) if the Oncotype score is in the low or intermediate range.  Conversely, women with high Oncotype DX scores are more likely to benefit from chemotherapy, but less likely to benefit from tamoxifen.

    Here is an excerpt from a report that was presented at the 2005 Annual Meeting of the American Society of Clinical Oncology:

    "The 21-gene Oncotype DX recurrence score has been validated to quantify the risk of distant recurrence in tamoxifen-treated patients with node-negative, ER+ breast cancer. To determine whether the Oncotype DX score predicts prognosis, response to tamoxifen, or both, we studied the patients randomized to placebo or tamoxifen in NSABP B-14.  ... [T]he test for interaction of tamoxifen treatment and ER was highly significant (p=0.0007), indicating quantitative ER expression predicts tamoxifen benefit. The test for interaction of tamoxifen treatment and PR was not significant (p=0.64). ... In contrast to quantitative ER expression which is only predictive of tamoxifen response, the 21-gene Oncotype DX assay is both prognostic and predicts the response to tamoxifen. ..."

    The abstract contains a table that refuses to copy-and-paste here in a readable format.  So, I'll translate it into words:

    In women with "low risk" Oncotype DX scores (scores < 18), 93.1% of those who took tamoxifen were alive without a "distant recurrence" (i.e., did not have metastases) over the next 10 years.  The women in that same "low risk" group who did not take tamoxifen were significantly less likely to be recurrence-free over those 10 years:  85.9% were distant recurrence-free.  That means the absolute benefit of tamoxifen in women with "low risk" Oncotype DX scores in that study was 7.2%.

    Women with "intermediate risk" Oncotype DX scores (scores from 18 to 30) also benefitted significantly from 5 years of tamoxifen.  Among the women in the intermediate-risk group who took tamoxifen, 79.5% were still metastasis-free 10 years later.  But, only 62.2% of those who did not take tamoxifen survived 10 years without a distant recurrence.  That's an absolute benefit of 17.3% from tamoxifen.

    In contrast to the benefit from tamoxifen in the women with low- and intermediate-risk Oncotype DX scores, women with scores in the "high-risk" category (scores > 30) were much less likely to benefit from taking the drug:  70.3% of the women in that group who took tamoxifen were distant recurrence-free after 10 years, compared to 68.7% of those who did not take tamoxifen.  This 1.6% absolute benefit in 10-year, distant recurrence-free survival among high-risk women was not statistically significant.

    The authors of that study drew the following conclusions:  "Not all ER+ patients benefited equally from tamoxifen. The largest benefits of tamoxifen were observed with high quantitative ER and low Oncotype DX recurrence scores, while smaller benefits were observed with low quantitative ER and high Oncotype DX recurrence scores."  [I've added the italics.]

    I need to mention that the study I'm citing was presented at the 2005 ASCO meeting and was published in the Journal of Clinical Oncology in abstract form.  I don't know if it was published in full form in a refereed research journal.  Here's the citation, nonetheless:  

    S. Paik et al.:  "Expression of the 21 genes in the Recurrence Score assay and tamoxifen clinical benefit in the NSABP study B-14 of node negative, estrogen receptor positive breast cancer".  Journal of Clinical Oncology, 2005 ASCO Annual Meeting Proceedings. Vol 23, No. 16S, Part I of II (June 1 Supplement), 2005: 510.

    I read that abstract a long time ago, but had not been able to find it again until yesterday.  I think it's something to consider whenever someone is thinking of going off tamoxifen, either because of the SE's or because she thinks a low Oncotype DX score means she's not likely to have a recurrence.

    otter

    [P.S.:  I've never taken tamoxifen, but I have been on Arimidex for the past 2 years.]

  • Raili
    Raili Member Posts: 435
    edited June 2010

    Otter, thank you so much for that post and all of that information.

    My Oncotype score was low (15), and my ER+ score is high - 10 on a scale of 6.5 to 12.5.  I didn't know that this means I am likely to derive the greatest benefit from Tamoxifen!  All along I've been questioning/doubting whether I even need the Tamoxifen, since my Oncotype score was so low, tumor so small and Stage 1, etc., etc.

    But your post has given me new resolve to stay on the Tamoxifen.  Thank you!!!!

  • jankell7
    jankell7 Member Posts: 7
    edited July 2010

    Yes, I tried all the pill-types and they upset mystomach, but I've been taking the infusion of Reclast for the last three years with no side effects at all. Will probably have another scan this fall to see if it's working.

  • llswong
    llswong Member Posts: 7
    edited August 2010

    Yes, I agree you should verify the onco test results.  A bit unbelievable.  My onco score was eight.  But my tumour is 1 cm and of grade 2. 

  • llswong
    llswong Member Posts: 7
    edited August 2010

    Also, one more point, Julia2, what is your Ki 67 proliferative index?  If this is high, it may contributes towards a high onco score.

  • BostonLex
    BostonLex Member Posts: 28
    edited October 2010

    My docotr called and told me my Oncotype DX score which is 6. That seems to be unusually low for a 4mm IDC, don't you think?

    I'm trying to convince myself not to take Tomaxifen. My doctor said that my 10 yrs recurrence rate would be 9% without Tomaxifen, 5.5% with taking Tomaxifen for 5 years. The benefits of taking Tomaxifen don't seem to outweigh the risks.

    Does anyone with low oncotype score opt out of Tomaxifen? I'd love to hear from you.

  • thegoodfight
    thegoodfight Member Posts: 560
    edited October 2010

    I might be mistaken, and hopefully someone will correct me if I am, but my understanding is that the oncotype score was to determine if chemo would be a benefit.  I believe the score is with the assumption that you are taking tamoxifen or another aromatose inhibitors.  With a 6,  I would certainly opt for no chemo, but I would take the hormonal therapy for the prescribed 5 years.  Just my opinion................................Caren

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    Caren,

    You are right the 6% is with tamoxifen. My score was 24 but with tamoxifen use it brought the score down to 16.

  • MarieKelly
    MarieKelly Member Posts: 591
    edited October 2010

    KIRA, I noticed in your earlier posts that you listed your cancer as a grade 2 in the bio profile and then it suddenly changed to grade 1 as it is now. What happened? Did you get a 2nd opinion on the slides? 

  • CNSTP
    CNSTP Member Posts: 11
    edited October 2010
    I am 63,post menopausal and was diagnosed in November,2009 with an 8 mm ductal tumor of my right breast,grade 1, er positive (98%)/pr positive (80% ),her2 negative,node negative.I had a bilateral mastectomy(my choice).My oncotype score was 18 and I was advised by Sloan Kettering to take Arimidex only,no chemo,which is what I am doing.
    I am wondering why the NCCN treatment guidelines say that if the tumor is node negative between 6mm and 1cm and grade 1,er/pr positive and her2 negative ,the NCCN recommendation is for NO adjuvant therapy at all and that the oncotype test is NOT recommended .I know that many node negative women with er/pr positive her2 negative tumors less than 1 cm and grade 1 are advised to have an oncotype test,which appears to be at odds with the NCCN guidelines.Does anyone know why the discrepancy? Does tumor grade and size trump biology?
  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    MarieKelly,

    You're right it did change. My early posts are from the biopsy. After the lumpectomy my score changed.  It changed in more ways than just that. It went from PR 67% to 34%. I really don't know why the change. It was looked at 2 times for both pathology reports.

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    CNSTP,

    I was suprised when I looked at the NCCN guidlines. Boy I wish I could answer your question. In my case with the oncotype test being 24 it led me to chemo. My BS and Radiologis both felt it wasn't needed, but the onc. felt I should. I will say seeing the NCCN guidlines makes me feel better about stopping chemo.

  • MarieKelly
    MarieKelly Member Posts: 591
    edited October 2010

    CNSTP, the reason they're not recommending any adjuvant therapy for well differentiated (grade 1 tumors that are less than or equal to 1 cm with no unfavorable features is because these types of tumors are very low risk. With any kind of medical treatment risk vs benefit is always going to be priority when determining who should get a certain treatment under a standard of care.  Since all treatment imparts some degree of risk, the potential benefits of that treatment need to far outweigh the risk for it to be recomended.

    With small, well differentiated tumors and otherwise prognostically favorable indications in women over age 40, the risks tend to outweigh the benefits. With any grade, tumor size is always a factor but given equal size, a well-differentiated grade 1 tumor is far less likely to become locally or distantly metastatic as compared to a poorly-differentiated grade 3 tumor.  A small 1 cm or less grade 1 tumor at diagnosis is statistically very, very unlikely to have spread anywhere - so much so that the potential risks of adjuvant therapy are likely to outweigh the benefits for most in that situation. So therefore, not recommending adjuvant therapy makes sense.

    The reason they're not recommending oncotype testing for these types of tumors is again, based on their very low risk. You generally don't expect to get anything other than a low oncotype result on a truly well differentiated tumor - and if you do, the logical thing would be to question the validity of the pathologists diagnosis. Since the predicted result would be a low score and that low score would not recommend chemo, what's the point of doing the test - other than maybe to crosscheck the pathology findings? 

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    MarieKelly,

    It will be interesting to see if the Dr. decide not to test the low risk tumors now. Makes me wonder, it sure would save the insurance companies. As for me I guess I'm the odd one with a grade 1, but then as you noticed it changed from the biopsy reportto the lumpectomy report. The nuclear pleomorthisn went from a 2 to a 1.

    Karen

  • CNSTP
    CNSTP Member Posts: 11
    edited October 2010

    MarieKelly,

    I essentially agree with you.However,I have seen a number of women on this board with small( less than 1cm tumors with favorable characteristics(er/pr+,HER2- neg,grade1) with high oncotype scores .I do not believe that they were misdiagnosed as grade 1,but some grade 1 women with favorable prognostic indicators have a high oncotype score indicating that the tumor biology may indicate a more aggressive nature than the tumor characteristics initially indicate.Perhaps the  grade 1 coupled with the tumor size of <1cm trumps biology in these instances . </p>

  • CNSTP
    CNSTP Member Posts: 11
    edited October 2010
    MarieKelly,I essentially agree with you.However,I have seen a number of women on this board with small( less than 1cm tumors with favorable characteristics(er/pr+,HER2- neg,grade1) with high oncotype scores .I do not believe that they were misdiagnosed as grade 1,but some grade 1 women with favorable prognostic indicators have a high oncotype score indicating that the tumor biology may indicate a more aggressive nature than the tumor characteristics initially indicate.Perhaps the grade 1 coupled with the tumor size of <1cm>trumps biology in these instances.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited October 2010

    i just tried to read the link.i think you have to be a rocket scientist to figure this damn thing out.just like bc its a big puzzle.im goin on the 27th for the test.i have a list of questions but im scared to death and after almost 1 yr.i still want to wake up from this sureal nightmare.

    i guess im gonna need your help after i get the score because right this minute i dont want to do anything.dont even want to go for the results of the test.this suks.bc suks.

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