Question about the "intermediate range" on OncotypeDX

24

Comments

  • curveball
    curveball Member Posts: 3,040
    edited January 2013

    @Lee7, you could be right. It isn't clear to me from chris' comment what her onc is recommending, only that she isn't recommending an AI, or at least not an AI immediately or only. I was going to participate in the trial for use of Oncotype in node-positive BC, but couldn't because at 28, I scored outside the eligibility range. But I remember the graph that came with my test results, and even with four or more positive nodes, at those very low scores, 5 year death rate from all causes including bc is higher with hormone tx + chemo than with hormone tx alone. I just did a little search on chris's posts and found this one from last November in which she said the Oncotype on the 2nd tumor was 16. She decided not to do chemo, and was taking an AI plus other lifestyle changes to reduce her risk. I guess she just isn't following this thread any more.

  • pupmom
    pupmom Member Posts: 5,068
    edited January 2013

    Curveball, strange.

  • Loral
    Loral Member Posts: 932
    edited January 2013

    I'm 51 years old my DX score was 34, MO said I should do Chemo, Radiation and Tamoxifen. After 9 weeks of research and fighting with the thoughts of doing any or all treatments. I choose to only take Tamoxifen, the one I think will benefit me the most,(ER+). I hope for the best, and if it returns at a later time, I can then decide on other treatments. My MO said based on my DX score of 34, my chance of getting liver, or bone cancer was 23% and by having Chemo that would bring it down to 11%. I didn't feel that that was enough of a change for me to put my body through Chemo, by the way breast cancer was never even mentioned when he talked about my DX score, only mets to other areas. I am not BRCA1 or 2, my breast cancer was a fluke. Hopefully to never

    come back again. It's a very tough decision, there is not a one size fits all in BC...I'm sure you'll make the right decision for you.

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Hi all,

    I need some help and opinions, please......I went to my oncologist today. She had predicted a low oncotype and just tamoxefin therapy. I'd already picked it up at the pharmacy! Well, it was not as low as she hoped. It was 18. She has given me three choices.

    1) take tamoxefin only and have an 11% reoccurrence rate to stage 4

    2) do 4 cycles of TC chemo to reduce the reoccurrence rate to 7%

    3) get monthly shots in my stomach to suppress my ovaries and put me in menopause, begin me on tamox and switch me to an AI. She said this would also reduce my reoccurrence rate to 7%.



    A big thing is that I had 5 tumors, 3 around 2 cm. My oncologist says things would be simpler if I had only had one. My age, 48, is also a factor.



    I have no idea what to do. Does anyone have advise or insight? She would like me to begin next week.



    Thanks in advance. It's been an unexpected day.

  • michellej1980
    michellej1980 Member Posts: 342
    edited February 2013

    I wish this test was available in the UK on the NHS. One thinks I've noticed from your signatures is that those with high scores tend to be ER+ and PR- like me so nth at concerns me. Could be just coincidence though.

  • momof3boys
    momof3boys Member Posts: 896
    edited February 2013

    My score came in at 16. My MO was on the fence about chemo, too. But, given my "young" age (43) and the fact that my tumor (one) was just over 4 cm....she recommended 4TC. I'm glad I did it. I just had a hysterectomy, too, and feel good about it.

  • momof3boys
    momof3boys Member Posts: 896
    edited February 2013

    Btw....I'm VERY highly ER and PR +, both over 95%

  • Tammy_M43
    Tammy_M43 Member Posts: 980
    edited February 2013

    Michelle - I live in Australia and had to pay $4,000 for the test!



    I only wanted chemo if it was a strong benefit and this was going to help me make the decision. My score was 18 and with just one lump and one micro met in my lymph nodes I decided no chemo. I think the result was of more benefit to my Oncologist than me.... it made her "feel comfortable" with my decision.



    This is a very personal decision but once made allows you to move on.



    Best wishes to everyone.

  • HealingDreams
    HealingDreams Member Posts: 50
    edited February 2013

    Hi, Lmimp64,

    What about exploring the side effects for choices 2 and 3 and letting those help you decide? What does your doctor say the advantages and disadvantages of 2 v 3 are? Also, if you start 3 and don't like the side effects, can you do 2? If you start 2 and don't think you can tolerate the side effects, can you do 3? Or, are these irreversible choices?

    My bias would be for the lowest possible distant recurrence rate. Mine, I think, is about 5%. You'd be doing well with 7%.

  • Rockym
    Rockym Member Posts: 1,261
    edited February 2013

    Lmimpo64, I would say to first go to cancermath.  You can find it at www.lifemath.net/cancer/breastcancer/therapy/index.php.  Specifically look at the therapy link where you can input your information with and without treatment to see the percentages.  I plugged in your numbers and it shows your risk with doing nothing is 7.3%.  Tamoxifen alone brings you to 5%.  Chemotherapy alone brings you to 3.3% and a combination gets you at 2.2%.  There are many of us who have gone though treatment because AFTER we did it, we brought ourselves down to the 7%.

    I had a small tumor, lumpectomy, but  had 2 micomets in the nodes.  I also had a 22 oncotype.  If the micromets weren't there, I would have gladly skipped chemo.  Some even say that micromets don't count as positive, but since I was at a 22, I decided to do it.  If my nodes were clear, I would have went right to radiation.

    The flip side now is that I couldn't take Tamoxifen.  This is something I would have never known ahead of time.  Tamoxifen had me jumping out of my skin and mind.  My gyn tested my hormone levels and I am now considered post-menopausal so the chemo brought it on perhaps 5 years earlier then it would have been.  The surgery, chemo and radiation aged me more than I ever thought.  I was the picture of health before this began.  Each treatment wears on you and the combinations can be rough.  Not always while you are going through it, but once everything is said and done.  So, you asked for opinions... there you go :-).

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Thank you so much for your input. I sooo appreciate your time. I think I'm going to try to get s second opinion. I haven't heard of option 3 being used much so I will dig a little deeper. Rockym - thanks for the site and plugging in my numbers. I will keep that information.



  • Yawls
    Yawls Member Posts: 39
    edited February 2013

    Hi all, I don't post often but this is near and dear to me. I was all set after the initial biopsy to go for internal radiation 5 days x2 per day, take tamoxifen and be ready to move on...because I had a rarer type of idc (mucinous) my surgeon ordered an MRI. results came back with two microscopic satellite rumors within the same quadrant. That took the short internal radiation off the table and opened up the possibility of chemo. The radiologist placed three wires so the surgeon could take out all three tumors...guess what, the two satellites were b9. However the real tumor was nestled in against the chest wall. The surgeon assured us that it had not breached the chest wall and was easily removed entirely. She was very confident that if she missed anything the radiation would take care of it. In my mind yippee, I don't have to convince anyone that I don't want chemo! Wrong, I did my mo consult and the first thing he suggested was...chemo. I reminded him of my favorable mucinous type and the fact that it had a very slow k67 8% nuclear and mitotic grade were also low...we finally agreed that we would let the onco test decide. I agreed that if it cam in in the grey area, was intermediate or high, that I would do the chemo. I went to the beauty salon and had my hair cut really short...I knew I was having chemo! Three weeks later when the results came back the mo seemed very hesitant to give me the results, I thought I had like an 80 or something, well turns out I got a score of 8. Mo saiid he would have a difficult time even recommending it with that score. He didn't have any trouble contacting the RO immediately and pushed for max radiation...I was so happy not to have the chemo that I was the most compliant patient. So I am on tx 20 out of 34 today. I will start tamoxifen after radiation for 2.5 years to build up bones then switch to AI for the rest. Rads are not easy, but not having chemo makes them much easier to handle. Good luck to all as you make your choices. Whatever you choose will be the right thing for you!

  • wildrumara
    wildrumara Member Posts: 450
    edited February 2013

    @limp64 - I was (sort of) in the same situation as yourself.  My MO was surprised when my score came back at 25.  I was 42 at the age of diagnosis and I had multi-focal disease also (two tumors, sized 2 cm and 1 cm).  I ended up choosing chemotherapy (neoadjuvant) and a few of  the reasons were my age,  my intermediate score, but in addition, I did some research on multi-focal disease. I think what your MO said about having that many tumors in one breast is an important piece to your decision.  I hope you get some clarity with your second opinion.  Keep us posted!

  • Rockym
    Rockym Member Posts: 1,261
    edited February 2013

    Definitely get second opinions... even third if that is what it takes.  I went to two different MOs.  One wanted to do TACx6 and the other said TCx4.  I also sent my pathology slides to Johns Hopkins for a second opinion on the tumor itself.  There were minor differences with those opinions, but it helped me feel more confident in my decision.

    You said, "A big thing is that I had 5 tumors, 3 around 2 cm. My oncologist says things would be simpler if I had only had one."

    I thought that would make you an IDC, 6cm (or something like that).  That changes things a bit.  I only had a 1.2cm IDC.  What you mention above would put you in a different boat.  Sorry if I didn't see that clearly the other night :-).  Please find out what it means or maybe someone will chime in on multiple masses.

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Thank you. You are very helpful by sharing what you did. I want to fight this and have the best chance of watching my son grow up.

  • Beckers
    Beckers Member Posts: 1,883
    edited February 2013

    I was 45 when diagnosed with synchronous BC. Largest tumor was 1.3cm and other side DCIS. Grade 2. 0/2 nodes. Oncotype DX 19. I opted out of chemo and rads for BMX and 2.5 years of Tamoxifen followed by AI. Two MO's stated they would not do chemo in my case. I was >95% ER/PR +. I am 50 lbs overweight so dietician also recommends mostly plant based diet and avoid plastics and styrofoam, etc to minimize estrogens. I had ooph 4 years before CA dx. Hope this helps. Good luck on decision making. It's not easy, that's for sure. I also think that I may be reserving chemo for later if needed.

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Rebecca. Thank you for sharing. That was helpful to know your choices. I appreciate it very much.

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited February 2013

    Hello ladies:

    Met with a med onc today and discussed next steps post surgery and internal radiation. We discussed my OncotypeDx results and he said with no further treatment, I am at a 15% distant reoccurrence rate with a score of 23. He is recommending the aromatase inhibitors and said that would bring me down to 10%. Chemo would only drop my risk 3% more. Felt like a relief that the numbers were not higher. I can live with the 10% with doing just the anti-hormone meds.

    I have one more med onc consult to do in my city (this was done out of state where I am getting my internal rad done). Will be interested to know more about his/her take on my pathology and genetic panel info. I think the decision will now be more about which anti-hormone meds to take and for how long.

  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2013

    Lorall...I am surprised your score was so high with a Stage 1, Grade 1 BC and Rockym it does make a difference if it is a micromet in the nodes. I had one in the SN. I was Stage 1 before that but that catapulted me to Stage 2. My BS said that would get me chemo but my ONC said she wanted me to have the Oncotype test. She said too many oncologists were overprescribing treatment costing women unnecessary expense and discomfort. So I had the test done which was paid for by BCBS. My score came back at 11 which saved me from chemo. Intermediate scores seem to generate a lot of different opinions among Oncologists.  I am sure they take several factors into account like age, general health, etc. but the decision is ours to make. After all it is our lives and we all want the best quality of life we can get. There are no right or wrong decisions for any of us. We make the best decision based on the best information we have. I was definitely resistant to doing chemo but to be fair who wants to? I did 33 RADS treatments and am on Tamoxifen. It was 2 years last month. diane

  • Loral
    Loral Member Posts: 932
    edited February 2013

    Edwards750.........I was surprised too. I guess out of the 21 genes they tested some aren't ER+ and those are the ones that caused my high score. It's quite confusing. I guess the cancer cells that aren't fed by estrogen are the ones my MO wanted me to have chemo for.

  • atanea
    atanea Member Posts: 58
    edited February 2013

    Hi,

    Does Oncotype DX show the KI67 value alone also?Or is just one score?

    Is there anyone here with a T1, grade 1, RE100+,RP100+,HER2-, negative nodes, Ki67 < 15%  but with LVI? Anyone that went chemo?  

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

    atanea,

    The Oncotype score factors in Ki67, but doesn't report it separately.  

  • curly123
    curly123 Member Posts: 127
    edited March 2013

    Hi there.  Just got my onco score.  It is 25. I am stage 2, grade 3, 0 nodes, 2.2 cm tumor removed via lumpectomy.  They are strongly pushing chemo.  My risk of distant recurrence with tamoxifen, rads and no chemo is 16%, which the chemo supposedly would reduce to 10%.  I am having a hard time believing in chemo for an improved 6% chance. They say they are very aggressive these days with young women with cancer (I am 38).  I just don't know what to do.  Hate the idea of poisoning my body but certainly dont want to make the wrong choice.

    Anyone have any advice?

    thanks

    curly

  • wildrumara
    wildrumara Member Posts: 450
    edited March 2013

    Hi Curlye-

    Like yourself, I had an oncotype score of 25, grade 2,  with multi-focal disease....(2 tumors about 2.8 cm total).   I had neoadjuvant chemotherapy which consisted of taxotere and cytoxan for six treatments.  After chemo, I opted for a BMX for various reasons.  My oncologist and I had a discussion before the results came in that if I was in the intermediate range, she felt that chemotherapy should be part of the treatment plan because of my age, which was 42.   While it wasn't easy, it was very doable.   There  are many things to take into consideration, and I think your age is definitely a factor.  That is great that you had negative nodes, so I would think oncologists would take that into consideration when  recommending the type of chemo regimen.....I think that TC X 4 would be suitable.  Another option is ovarian supression.  Some docs are now saying that ovarian supression plus Tamoxifen is just as good, if not better than chemotherapy for early stage, ER/PR positive women.   You definitely should have a second and maybe even a third opinion to ease your mind.  If I can answer any other questions, please don't hesitate to ask.   There is a TON of information on these boards regarding this subject.   I used to say often "I'm 42, I have a long life ahead of me, which also means I have a long time for cancer to recur.....I didn't want to take any chances, but that was me.   Please talk to your MO about ovarian supression option.  Its definitely something to think about in your case? 

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited March 2013

    Hi there:

    I am Stage 1 Grade 1 with bilateral bc. Invasive on 1 side, DCIS on the other. My invasive had a score of 23, DCIS was 12. The question was, what to do to treat the invasive since it has the higher score and was more of concern. MO said I have a 15% reoccurrence rate, and that could be brought down to 10% with hormone therapy. Chemo would only bring it down to 7%. He said if I wanted to treat it aggressively and get my reoccurrence number in the single digits, I could do chemo but he was not pushing it. I am 53 and think for my situation, that made sense. I finish my last rad treatment a few weeks ago and am gong in for a bone density test tomorrow and starting on Arimedex soon.

    Do get additional opinions as the intermediate score just has no clear answers. Trust your gut too, some women really feel chemo is going to give them the extra they need to ensure successful treatment, Other women (like me) really want to avoid it unless there is a large benefit. Explore your options through the different opinions. If 2/3 or 3/3 recommend chemo, you will go into it knowing you did your due diligence. 

  • beau
    beau Member Posts: 374
    edited March 2013

    Hi Curly,

    Sorry to hear about your diagnosis! My score was also 25 and as my signature below shows, i had Grade 2, 2 cm IDC.

    I was really not in favor of getting chemo but I did seek out a second and even third opinion. The more I learned, the more I felt that I needed to do it.

    You have a grade 3 tumor which means it grows quickly and could respond to chemo well. In my case, my tumor is highly ER positive but PR negative So there is some research that suggests that I might not get as much out of hormone therapy with PR negative.

    In Any event, I was 50 at diagnosis with two young children, so I felt that I needed to throw everything at it.

    I'm coming up on three years out now, I feel great and I'm very glad I did it.

    I wish you peace whatever you decide and best of luck. Best, Beau

  • curly123
    curly123 Member Posts: 127
    edited March 2013

    Hi Beau. Thank you so much for the response.  I really struggled with this but have decided to go ahead with the chemo.  If it came back, I don't think i'd want to wonder if the recurrence was due to not doing chemo in the first place.  I am really down about it, but I'm sure most people are.  it's just the way it is.  I am working on the hospital still, to allow me to do the cold caps.  Figure I have nothing to lose.  waiting to hear back from them.

    Wish me luck.

    Hope you are well.

    curly

  • wildrumara
    wildrumara Member Posts: 450
    edited March 2013

    All the best to you Curly.....Personally, I think you're making a good decision......You are young and will bounce back in no time!

  • curly123
    curly123 Member Posts: 127
    edited March 2013

    Thank you Wildrumara.  I think I know it's the right decision; just a brutal one.  The support on here has been amazing.  A big help to come here.  Thanks to all of you.

    How are you doing now?

    xoxo

  • wildrumara
    wildrumara Member Posts: 450
    edited March 2013

    Doing well!  The only thing I complain about on a regular basis is a 10 lb. weight gain since my diagnosis and some aching joints in the morning, but that's it! 

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