Another Oncotype question

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  • dobie
    dobie Member Posts: 424
    edited June 2012

    Comments on the last few hours of discussion:

    Purple 32- It made sense to me not to take hormonal therapy 5 years ago, based on what I knew and it makes sense to me now to take it now that the situation is different. I wish you had better options for yourself. I wish we all had better options. That's what I mean, no easy decisions.



    Lisa2012- this is my understanding of survival vs reocurrance: Not everyone who gets BC dies of BC. Those of us who have early, small cancers detected then treated are not very likely to die of the disease even if it reoccurs. Our survival rate is darned near 100%. So taking tamoxifen or an aromatase inhibitor (AI). Will reduce the risk of reocurrance but it will not change risk of dying of BC because our risk is already very very small. This is the reason that some people will chose not to take the risk of hormonal therapies. Some chose to live with the risk of reocurrance rather than the risks of side effects and change in quality of life from tami and AIs. But there are so many other factors that go into individual decisions, that is why it is so personal. I have been very impressed (for the most part) with the respect posters have for each others decisions.



    Julz4- I have been a women's health care provider and certified menopause practitioner for many years and have read a lot of studies about hormones and birth control. There is no evidence that hormones cause breast cancer. The combination of estrogen and progestin together may slightly increase risk of BC but does not cause it. In fact the 2002 WHI study that got so much press actually showed that taking estrogen only, decreased risk. Your friend with the hysterectomy, almost certainly got just estrogen since progestins are given with estrogen to protect against uterine cancer which is a SE of unapposed estrogen. Truth is no one knows for sure what causes BC other than the BRCA gene. Yeah, that pretty much causes it, but other than that...We all know people who seemingly have no risk factors and get it and those who took hormones, drink , don't exercise, eat unhealthily who never will get it. Go figure. Irregardless, no one deserves it. Let's hope in our lifetimes we see this puzzle solved.



    Ok. That's my 2 cents worth.
    Edited to add: Purple 32- You do know that Tamoxifen actually acts like estrogen on bone and can increase bone mass, don't you?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    According to the 2012 NCCN breast cancer treatment guidelines, page 17 of the professionals' version (not patients' version), the Oncotype DX test should be considered for ER + tumors that measure greater than 0.5cm. The guidelines DO NOT distinguish grade when considering the test. Considering that the guidelines constitute the accepted standard of care, I do not believe that Mass General would single out grade 1 tumors and not recommend testing them. If your tumor is smaller than 0.5 cm then regardless of grade, the NCCN guidelines suggest NOT considering the test. Furthermore, the NCCN guidelines recommend that if your tumor IS greater than 0.5 cm and you DON'T have the Oncotype DX test, they say you should do endocrine therapy +\- adjuvant chemotherapy (Catagory 1level of evidence).

  • bangotti40
    bangotti40 Member Posts: 19
    edited June 2012

    High ER (99%) and high PR (97%) and my oncotype came back in the low range.  My KI67 was in the high range (30?) so I really think it was the high ER and PR scores that made my oncotype low.  I've read from my MO that the ER/PR scores are a huge determining factor in the oncotype score.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    Bangotti. ER/PR scores are just part of the complicated equation that goes into determining the Oncotype DX score. It would be nice if it was that simple, but it isn't. There have been a number of sisters that were highly ER + that came back with high Oncotype scores. The good news for you is because you are highly ER+, if you choose endocrine therapy, you should get the most benefit.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Dobie

    Yes, I do know  about the tamox., which is why I refused arimidex and opted for that .  I still have reservations when I think of blood clots, strokes and other cancers... like you said, not many good options.  Thx.

    Voracious

    If your tumor is smaller than 0.5 cm then regardless of grade...

    I was told mine was 0.8 cm.  Go figure .  I am not 100% sure what you mean when you say ,  " I do not believe " ...  , regarding MassGeneral.  It's true !  The RO told me they dont do the oncotype ( in cases with my stats) because there is no need to ' quantify" the ER PR positive ...endocrine therapy is recommended - period.  The BS told me they dont do it because  I would nto be a candidate for chemo - period.  I contacted the Genomics,and they thought I was wrong too---- until they strated looking through cases.  I am telling you the factual info that I got form several reliable sources.  That's all I can say !

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    Purple... I was Stage 1 and Grade 1 and the Oncotype DX test was suggested to confirm that I would not benefit from chemo. Interestingly, with my type of tumor, mucinous, the Oncotype DX test isn't recommended in the current NCCN guidelines.



    All I am saying is according to the NCCN Guidelines, there is NO MENTION of grade when making the recommendation for the Oncotype DX test and I find it hard to believe that Mass General has an ABSOLUTE rule that would contridict the NCCN guidelines. And if your tumor was 8 mm then you qualify for the test according to the NCCN guidelines. Furthermore, it is believed that the Oncotype DX test trumps grade because grade can be subjective.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    Purple... I just checked over at the johns Hopkins Ask The Expert website devoted to breast cancer questions and looked at a recent question dated 5/20/12 under the Chemotherapy heading. The person wrote in with a 4 mm grade 1 tumor and asked if chemo was warranted. The answer Lillie Shockney, RN gave was that the patient should discuss getting the Oncotype DX test with her team.



    Have you checked the NCCN guidelines? It's not that I don't believe you, I just don't believe that Mass General would not be making the recommendation. Why have guidelines if practitioners ignore them? I know I would be very annoyed with my team if I read the NCCN guidelines after I made a decision and then realized I wasn't given the recommendation to have the test during the decision making process.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    voracious

    I dont know why there are guidelines that are ignored...yes, I AM very annoyed. I WANT the testing!
    es, I *have* checked with the team!  I didnt even know aboit any of this until this forum.  When I saw people's stats, I started to question it. First, I questioned my BS who said she does not do the test on ppl with my stats because chemo is not indicated with my known stats . Then,  I asked the MO and she said it did not matter and she does not need to quantify ER  PR %. I also asked the RO----no!  FInally, I calkled again just FRI and got an assistant ( one of the DRs was on vaca) who *finally* agreed to order the ki-67 (only) though she actually said they normally dont do that in cases such as mine and therefore my ins. probably wont pay!  ( Wonder how she is coding that bill)

    I do not have DCIS.  Bonafide IDC ., I do not understand either, but I do know what I have been told by all of them.

     I have also called Genomics... at this point, if we are going to belabor the issue , I think PM might be best.  I have told you all that I can. I can assure you it is factual. I have checked and double checked.

    Thx .

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    https://elcaminogmi.dnadirect.com/grc/physician-site/oncotype-dx/oncotype-dx-testing.html

    Purple....Above is a very simple explanation explaining the NCCN and ASCO guidelines.....

    Rest assured, like me, you have EXCELLENT prognostics and IF you had the OncotypeDX test, your score would probably be in the low recurrence category.  However, I am surprised, to say the least, that you are NOT be offered the test.  My situation was very straight forward.  My surgeon passed along my tumor sample to Genomics and by the time I had my MO appointment, my Oncotype DX results were known.  Mucinous breast cancer is a very rare breast cancer with a "favorable" prognosis and my score came in EXACTLY where the average score for mucinous breast cancer would be, which is a "15."  However, I just want you to know that over on our mucinous breast cancer thread, we've had sisters whose scores fell in the intermediate range even though they were Stage 1, Grade 1.  Annicemd has a thread, "Stage 1, Grade 1, premenopausal" and many of sisters who post there also have the OncotypeDX test. 

    IMHO, I would go back to your doctors with the ASCO and NCCN guidelines in hand and tell them you want the test.

    I wish you well!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    Purple....One more thing about the importance of the OncotypeDX test....Depending on the score, even if it's in the low recurrence category, there are still treatment decisions, besides chemo that need to be made.  Because I was still premenopausal at diagnosis, I decided on doing ovarian suppression because of my score.  Had my score been much lower, I might not have done it.  Furthermore, if you are post menopausal at diagnosis, and are older than 40, you might have a discussion with your MO about doing Zometa.  So, IMHO, the score is VERY important because it can help you decide how aggressive you might want to be....OR UNaggressive.  Your doctors assuming your score would be low seems out of step with current practice.....

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    voracious

    No argument here .. I agree !

  • dobie
    dobie Member Posts: 424
    edited June 2012

    Like I tomed earlier, I discussed the Oncotype testing with MO and to my surprise he ordered it without a fuss despite the fact that I do not fit the guidelines having two

    0.2 mm tumors. Guidelines are just that and not law. Each physician or system can make their own judgements and decisions about testing. Obviously, Mass general has a policy not to order testing in cases like Purple's. But policies can be changed, so I also encourage you to push for it. I got a call from genomics a few days after MO ordered test stating that insurance would cover test and did I want to go ahead with it? The MO ordered it on condition of my final approval, giving me the choice to have it or not after knowing insurance status. I am one of those cases, as voracious stated above, where my score will help me make other treatment decisions besides chemo. Good luck, Purple.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012
  • DianaNM
    DianaNM Member Posts: 281
    edited June 2012

    The first time I met with my MO, she said no Oncotype test. Because of my 99% positive ER score (70% PR), I guess. At the time, my tumor was measured at 2.3 cm. 

    After surgery it was at 2.5 cm with the highest mitotic score. Don't know if it grew. The surgeon offered to order the Oncotype test.

    It came back at 25, right in the middle.  I see my MO next week. Guess I will have some decisions to make. 

    None of this is easy, is it? I thought MX without recon would be pretty easy to recover from, but that has not been the case. I'm pretty terrified of chemo because of my history of problems with meds, and again the HT. But I know I'm going to need to give those a good shot.

  • lisa2012
    lisa2012 Member Posts: 652
    edited June 2012

    I did take the HRT patch for 3 yrs when I had the menopause from hell. Tooo bad. However, my sister and cousin who have BRCA1 as I do both have had cancer and DIDN"T use any hormones, even birth control, so who knows. And my mother and stepmother both took premarin for over 30 yrs, no cancer.

    My MO did oncotype, it was 38. Insurance paid, fortunately My grade was 3 on my little 8mm tumor. So who knows if it was needed... maybe since I was hesitant about chemo he wanted to convince me. Anyway, here I am, about to finish my TC4 next week, with moderate though unpleasant SEs. No infections, hurting fingernails, watering eyes bigtime, managing tummy with prevacid, colace, and occasional miralax. Weird rashes that come and go, 8 lbs steroid weight gain... and hurting stiff legs. Plus the fatigue factor of course. I am scheduled to try a hormonal follow-up.

    BTW after treatment my sister did Herceptin, Tamoxifen, and Aromatase- no side effects except a little bit of bone thinning. She looks great 7 yrs out.

  • cyano
    cyano Member Posts: 67
    edited June 2012

    I'm Stage 1 and Grade 1 with 95%ER and 80% PR, but the Oncotype came out as 26. I meet with the oncologist on Wed.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    Cyano... If you are stage 1 grade 1 and also premenopausal, annicemd has a thread with a wealth of info... Do a search and you will find her thread. It is quite active. Good luck with your appointment. I wish you well!

  • Myopiawmn
    Myopiawmn Member Posts: 38
    edited June 2012

    ER+ bit had an oncotype score of 47. I had already had chemo (oncotype was done a year later) because of my age but if I had it done beforehand, I probably would have pushed for a more aggressive chemo or have gone with a mastectomy.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    I got my ki67 score! Less than 5%. I am con sidering skipping hormonals.if there is any reply please pm. I have no access to computer for. 1 week.Thx















  • Layla2525
    Layla2525 Member Posts: 827
    edited June 2012

    lisa, I was mentioning the hormone therapy for menopause like Premarin,I finally got the copy/paste to work and think I stuck part of the article on Exchange City thread.

  • DianaNM
    DianaNM Member Posts: 281
    edited June 2012

    OK, for the OP. There is a chart on the Oncotest report called "Node Negative, ER-Positive Breast Cancer Chemotherapy Benefit". Because my score was in the mid range (25), and PR positive % was high, it shows a negative chemo benefit for scores in the mid range (18-30). But it looks like if your score is over 31, chemo would decrease distant recurrance by almost 30%. 

    So I think it was worth getting the test.  

  • RaychlD
    RaychlD Member Posts: 11
    edited July 2012

    Hello everyone,

    Just joined this forum today although I have visited it a few times a week since my dx last December. I appreciate everyone's candidacy and openness. My oncologist never discussed onco type with me just that I was stage 11 grade 1 and multi focal so he was glad I decided a mast over lumpectomy. Completed chemo and looking towards Rads but since I'm still learning more about the onco score, I'm hoping to avoid it. If in fact one wasn't preformed on my tumors (2), is it too late to get one done? Thanks for any help around this...

    Raych

  • DianaNM
    DianaNM Member Posts: 281
    edited July 2012

    Hi Raych. The Oncotest gives you a score to let you know how much chemo would benefit you. Since you have already had chemo, I don't know how much good it would do you.

    Did you have positive nodes? I was able to avoid rads by having a mastectomy instead of a lumpectomy. Really, you might want to consider a second opinion on that. 

  • bevin
    bevin Member Posts: 1,902
    edited July 2012

    HI Raychld, If you already had chemo it would not make sense to have the Onco tpe done.  The purpose is to see if your tumor type benefits from chemo.  Since you've had it, it makes the cost and expense a moot point. 

    Good luck and I hope the rest of your treatment goes smoothly.

  • RaychlD
    RaychlD Member Posts: 11
    edited July 2012

    Thanks for your replies,

    I was looking for the Oncotype to help make a decision around radiation, to know my statistical chances for recurrance, etc. I think it's better to know exactly where your at statistically although how much weight one wants to give stats is another thing altogether. Sigh... I had one lymph node involved w mast and a close margin which puts me into the rads. I was 35 when I found the lump last year but 36 at dx so on the younger side. Seriously bumbed out about all this, don't know when I'm going to have a day w out crying or having insane mood swings... Thought it was just the chemo but since I'm two weeks complete from that now, I guess this is the new normal.

    Thank you all,

    Raych

  • bevin
    bevin Member Posts: 1,902
    edited July 2012

    HI Raych, I'm sorry you're so upset.  I was diagnosed at 43, now 45. So a bit older than you, but still young for this darned disease. 

    What are your Oncologists recommending. ?  I honestlly have never heard of Oncotype being used for radiation determination.  That is not what its for as I understand.  You can also go to cancermath.com and see your recurrence with your cancer type, or adjudavanton line. just sign up like you're a doctor.

    My dear friend had 9 lymph nodes involved, major disease with 6cm tumor. She had a mastectomy , chemo and then  had a CAT scan to determine if Rads was necessary. onco told her she didnt need it. Could you talk to your Onco about that idea?

  • RaychlD
    RaychlD Member Posts: 11
    edited July 2012

    Thank you Bevin,

    I heard that radiation targets the faster dividing cancer cells as well, not sure of my source so maybe it's mute pt.... Thanks for response :-)

  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    @RaychID, you might ask your doctor about looking at the Adjuvant!online website with you. I only got a very quick glimpse at it during my last appointment with my oncologist, but I think it might be helpul for you as you decide about your further treatment. As I understand it, the site uses data from research to give an estimate of recurrence probability based on your tumor characteristics like size, hormone receptors etc, and can also take into account what treatments you have received and what additional benefit (if any) you could expect from adding RT to the treatments you've already had.

  • lisa2012
    lisa2012 Member Posts: 652
    edited February 2013

    Weird, here I am 9 mos later, after chemo because of my Oncotype 38, and my ER <5 from Genomics and 30% on the IHC. MO said because of high Ki67, (I think 140 or something) and oncotype, and BRCA1 pos- he really wanted me to do chemo. OK. Now I am struggling with AI hormone treatment. Arimdex and now Aromasin. Unfortunately I seem to be struggling with the aches and pains with both. Sure need ibuprofen!!

    So I  hope I the hell AM ER positive or taking this is really not worth it!! Anyone else out there struggling with conflicting results on tests???

  • doxie
    doxie Member Posts: 1,455
    edited February 2013

    lisa2012,  

    A lot of people find the Oncotype ER and PR scores confusing when compared with the IHC %.  One problem is that the Oncotype doesn't use %, but different ranges of numbers.  Even more confusing is that these aren't even the same amongst the ER, PR and HER2 scores.  Then they add whether the score is in a positive or negative range.  A negative in the Oncotype range doesn't mean you have 0% ER, it means that your ER is low enough that Tamoxifen may not be as effective as on tumors with higher scores.  So it is a "negative" on your overall Oncotype score making that higher than if your ER had fallen in the "positive" range.  This all gets more confusing when a HER2 score of "positive" causes a higher Oncotype score overall than if it had fallen into a "negative" range.  These numbers and more all plug into a formula to get your overall score.

    One way to visualize this is to stretch out the ER chart from 0 - 12.5.  Look at where the arrow falls for your score.  Is it at about the 30% point?  When I do this for my ER, PR and HER2, my ER seems lower, my PR and HER2 higher than my pathology reports, but not enough of a difference to effect what my treatment was or needs to be.  And that's really the point of all this, right?  Giving you and your team the information to make the right treatment choices?  

    The problem with those of us on AIs, is that the Oncotype takes into account Tamoxifen, not AIs.  Also CMF, not TC, ACT, and other stronger chemos.  There are some plums to pluots comparisons here, not quite apples to oranges.  

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