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All TopicsForum: HER2/neu Positive Breast Cancer → Topic: Oncotype and HER2

Topic: Oncotype and HER2

Forum: HER2/neu Positive Breast Cancer — Testing, Herceptin (trastuzumab) treatment, side effects, and more.

Posted on: Sep 19, 2009 07:57AM

mmm5 wrote:

Hi Ladies-

Did any of you have oncotype with your early stage Her2 dx? Most say they don't because with the Her2 it is going to be high anyway and you have to have chemo too so why bother. My ONC did it and it came back very high. However it shows the affects of chemo on that score and made a huge difference. (and it has not even been updated with Herceptin yet)

So the score tortures me but I think how can it be so high (30 percent chance of recurrance) without nodes and LVI. It comes down to 10 percent with chemo and tomox and of course I add in the Herceptin to take off another 50 percent off the 10.

Anyway just curious if you all had to go through this dumb test too?

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Sep 19, 2009 08:04AM suemed8749 wrote:

No, my onc (the "second best onc in the area", as you know Wink) doesn't do it for Her2 patients. It didn't even come up. He also didn't do it for my friend who is ER+ Her2- since she had one positive node. I guess if he knows someone is going to need chemo anyway, he doesn't bother.

(By the way, I got my port out two weeks ago - what a great feeling! I can wear a seat belt again!)

Have a great weekend,

Sue

Dx 1/15/2008, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Sep 19, 2009 08:11AM noellech wrote:

Sue, I just had my port out two weeks ago. What a great feeling!

mmm5, I also did not do the oncotype. My onc at Northwestern never even mentioned it. Although she did cite a 10-15% chance of recurrence without treatment. So I am surprised at your 30% number. I was grade 1 with 0.5 cm tumor but still I am depressed about your 30% number. Seems high for your circumstances. Maybe I am glad I didn't do the test.

Dx 6/21/2008, IDC, <1cm, Stage Ia, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Sep 19, 2009 08:21AM mmm5 wrote:

Personally I think it is dumb and the data show (md anderson retrospective study) somewhere I think around 30 percent for >1 cm with NO treatment. The thing that the ONCOtype does illustrate is the huge effect that chemo has on the tumor and then if you add Herceptin things look good.

I always wonder what percentage of woman with Node Neg have LVI, I bet Orange will know. Then I wonder if they are the ones that suffered in that study without chemo or Herceptin and perhaps that is why stats are so much better now.

Anyway just thinking out loud

SUE so glad to hear from you ....I had a big LOL from your post. I might have to vote for yours now cause he is smart enough not to do the ONCOTYPE. oh thats right its just Doctors voting for their peers.....how fair is that.....NOT

So glad to hear about your port..what a difference that makes.

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Sep 19, 2009 08:23AM mmm5 wrote:

By the way Noelle you are grade 1 and that is perhaps why the 10-15...who knows.

Don't worry your stats are great less than 1 cm grade 1 and Herceptin...I am sure you have a lower recurrance score

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Sep 19, 2009 04:51PM helena67 wrote:

Hi mmm5,

I would also think that it is the difference in grade (1 vs 3) that must make a difference in the score. Maybe you also had a higher Ki67? - though I am not sure if that is somehow counted in the Oncotype score. I will never know my score but it is probably very high. Part of me wants to know and part of me doesn't.

How are you doing lately? Hope you are very well. Have you gotten the hormonal treatments (tamoxifen vs AI) sorted out?

Best regards,

Helena.

Dx 8/2008, ILC, 6cm+, Stage IIIa, Grade 2, 4/11 nodes, ER+/PR-, HER2+
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Sep 20, 2009 12:34AM mmm5 wrote:

Hi Helena

Actually my Ki67 was relatively on the lower end still positive but only 15%. They believe that it was a high score just based on how highly Her2 the tumor was, and Oncotype scores just have not added in the benefit of Herceptin not updated yet.

I am doing ok and am still off of the AI until they take my Hormone levels one more time at the end of this month to determine exactly where I am at.

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Sep 20, 2009 01:23AM, edited Sep 20, 2009 02:07AM by swimangel72

Hi mmm5 - I'm glad you started this thread - you always ask interesting questions!

I DID get the Oncotype DX test done - but it was done in error. My onc ordered it before he received the results of my FISH report. My Her2 status originally was "equivacal" and in tiny print at the bottom of the path report, it said the tumor was sent out for a FISH test. My breast surgeon and his office dropped the ball on this one - while I was so sick in the hospital with the MRSA - and while my brast surgeon was moving from his old dusty office into a brand-new shiny more expensive place Money mouth -  no one bothered to follow-up on receiving this report - not even me, because I had no clue what was going on.   Once I was released from the hospital (3 weeks after my original surgery date) and finally saw my onc in his office, he said the results of my Oncotype DX were "low" and I wouldn't need chemo - I could just go home with a prescription for Arimidex..........but "oh wait a minute, what's this? Your FISH report was never received. Wait here just 5 minutes while I have them fax it over, then you can leave."...............well, 5 minutes later he opens the door with this really serious expression on his face and says, "Come back inside and let's talk about your FISH report." My heart dropped.........almost as much as when I was first dx'd with bc. My onc proceeds to tell me that my FISH report shows the tumor was Her2+++ and I would definitely need chemo with Herceptin and probably a port. Cry Later (after researching info here at bc.org and getting MUCH smarter) I asked him what my actual Onctotype DX score was - and he said 22. Well - duh - 22 is NOT a "low" score - but "intermediate" with a 14% chance of recurrence! I was flabbergasted! I was led to believe by my breast surgeon that by getting a mastectomy instead of a lump with rads, I had decreased my chance for recurrence to near 0% - so much for believing numbers from a surgeon..........stupid me, I should have seen a medical onc before making any surgery decisions. My onc was so shocked at my Her2 status, he sent the tumor out to a second lab for a second FISH test - and it came back even higher - Her2++++. He said it's very unusual to see Stage 1 Grade 1 tumors showing up so highly Her2+..........I just mentally keep thanking the radiologist who first saw the nodule in my mammogram!

Sorry for being chatty-Kathy (my nickname since kindergarten!) Even though your score was very high mmm5 - it was good your onc got the Oncotype DX test done, sounds like he was being very thorough, especially considering your Grade 3.  There are a lot of genes they examine to determine your recurrence rate.........and I for one like to KNOW all about the good, the bad and the ugly with this horrible Beast! 

Edited to add:  A new study reported here at bc.org shows that many women are not getting the proper testing done prior to being treated with Herceptin - I would have fallen into that category if my onc hadn't noticed my missing FISH report!

http://www.breastcancer.org/symptoms/new_research/20090914.jsp

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53

Dx 2/5/2008, IDC, <1cm, Stage Ib, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Sep 20, 2009 02:26AM mmm5 wrote:

I don't know if they are interesting questions or just a sign that I am obsessing wayyyyyyy tooo much!! LOL.

Here is my thought I don't believe that even an oncotype test is enough to look at the full picture especially when Herceptin is not factored in.

One thing they do not take into consideration is the Ki67 which shows how on the move the tumor is and LVI (which data show that for node negative women presence of LVI increase risk up to 4x) So while they are looking at the histology of the tumor they really aren't looking at the actual state of tumor at the time which I believe (and of course I am no scientist) is extremly important.

My score illustrated a 30% recurrance rate w/o treatment, 20% improvement with chemo, and 50% improvement with Herceptin which takes me back to the same old 95% number that HERA and my Oncs quote. So Again I wonder on the significance of Oncotype...I really appreciate the feedback from you all and the discussion.

And Swim I love the "chatty cathy" it makes for a very good discussion and I don't get that with anyone in my immediate circle  because they don't get BC AT ALL!

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Sep 20, 2009 02:40AM swimangel72 wrote:

Thanks mm5 - my tumor had no evidence of LVI - did yours? And you are right - no one test alone is enough for an onc to determine the course of an individual's treatment........that's why one onc told me, "it's an art, not just a science". Actually - I never saw any mention of a Ki67 level on any of my path reports..........just that the tumor was "well differentiated" and had a low Bloom-richardson score (I think 3/9). I know other women who never had a Ki67 test done........again, I suppose it all depends on the onc and his "art". Have a nice weekend - the sun is shining here - and I'm finally getting off the computer and to the pool to help my hip! Cool

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53

Dx 2/5/2008, IDC, <1cm, Stage Ib, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Sep 20, 2009 02:21PM orange1 wrote:

Hi mmm5

re: Incidence of LVI - I haven't read much on this, but I did see one study from Annals of Surgery, August, 2004.  

This study looked at the LVI status and prognosis of 374 women with BC.  Out of these 374 women, 105 had tumors with LVI (Includes all stages of BC).  171 women in this study had node- BC.  Out of these 41 had LVI.  

Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Sep 20, 2009 02:39PM, edited Sep 20, 2009 02:41PM by mmm5

Swim - did not have LVI, . However I want to point out that many many are fine with the Herceptin that have had LVI and Positive nodes. I know 8 women personally (family and friends) that have had BC 2 of which were Her2 positive and both had many nodes big tumors and both are 6 years out.

I did read a retrospective study that looked at LVI in node negative women, now keep in mind this is prior to Herceptin use and many stage 1 women were not getting chemo back then, but it did say that LVI in node neg women were more likely to reccur by 4-5x. That being said that was still only putting them at 15 percent at 10 years and again not Herceptin, chemo etc.

This is why it is truly important to look at the big individual picture and not just rely on Oncotype score for deciding on chemo. If you look at some of the other threads you will see women trying to make the decision on chemo their ONCS are on the fence because they are node neg and their Oncotype is low or in the mushy middle, that is when I believe they should consider LVI and Ki-67 etc.

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Oct 15, 2009 11:28AM amyob wrote:

This is my first time on the board.  I have my first oncologist appointment on Monday, Oct. 19.  I was diagnosed with DCIS, had a bilateral mastectomy on Oct. 2, and have desperately been trying to figure out what my options for treatment may be.  I am ER+ 10%, PR+5%, and Her2 pos, +3.  Can anyone help?  I am so scared right now.  It hasn't even been a month since my mammogram.  This has all happened so fast and my mind is spinning from research....

Dx: 9/19/09, Stage T1mic, DCIS, < 1mm microinvasion, ER+/PR+, Her2+, 0/2 nodes

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Oct 15, 2009 11:58AM, edited Oct 15, 2009 02:28PM by orange1

Hi amyoboe -

I know this is all scary, especially since it is so new.  But try to relax a little.  With only a microinvasion and grade 2, its very unlikely you have any cancer cells still lurking around so you have time to gather information.  If I were where you are now, I would hear what your onc suggests, that will give you direction for future research.  You absolutely do not have to make any treatment decision immediately.  You can always make an additional appointment with your onc to discuss further once you've had time to digest it and come up with more questions.  Or just call him - most are good about calling back. They are  very used to phone calls and additional questions. 

Some questions to start with: 

Do I need chemo - why or why not?  I would guess not for only a micro invasion.

You will likely be offered hormonal treatment.  Ask him the pluses and minuses of all of them so you get a better understanding of your options.  Ovarian suppression, tamoxifen, oophorectomy + A!.

Just know that you have a great prognosis.  And you have time to conduct more research or get a second opinion, if that makes you more comfortable.

Good luck on Monday - let us know how it goes.

Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Oct 20, 2009 10:59AM amyob wrote:

I really can't thank you enough for all the good advice.  The discussion board has definitely given me the information and moral support I've needed to get through this.  My oncologist wants to put me on Tamoxifen only.  I asked him about the 2D6 test and he said he would find out where I can go to get it, whether my insurance will cover it, and how much it costs.  He suggested an ooph if the BRCA comes back positive.  He also said Tamox reduces your risk of ovarian cancer, which is very hard to test for.  I then spoke to my doctor at the genetics center and she told me I could have the 2D6 test done at the Mayo Clinic or have it sent to a hospital even closer.  I sure hope I am an EM!  The PM outcome is so terribly daunting.  What are your treatment options if you are a PM, I wonder?  I feel relieved to have a plan, but I really thought they would be doing more tests to see if the cancer managed to get past my lymph nodes and regular testing for recurrence.  He told me that since I was node negative, they only do testing if you have symptoms.  He also said if there was a distant recurrence, it would be stage 4 because I'm Her2 pos, 3+.  My genetic doctor asked me if I hit him for being so blunt.  That part is hard to deal with right now, but I am getting better at focusing on doing everything I can to be healthy.  Tomorrow I see my surgeon and, although I actually really liked the onc despite his bluntness, I will ask for a referral to get a second opinion.  It couldn't hurt, right??         

Dx: 9/19/09, Stage T1mic, DCIS, < 1mm microinvasion, ER+/PR+, Her2+, 0/2 nodes

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Oct 22, 2009 05:11AM mommymac wrote:

I have yet to seen my onc yet (next week) but am really confused with what different treatments people are getting.  Like amyobe, only being put on Tamoxifen?  WHat aabout the Herceptin???  I thought Herceptin was suppose to be the wonder drug for Her2+ ?  I realized there are many factors in how you are treated but still very confusing.  I surely don't want to be overtreated but don't want any regrets either.  Is chemo almost always in the cards for Her2+?

Lisa

Dx 9/8/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR-, HER2+
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Oct 22, 2009 05:32AM orange1 wrote:

Mommymac - you are right, just about everyone with Her2+ breast cancer will get Herceptin.  The reason Amyoboe may not is because her tumor is minsucle - about as small as it can be and still be called a tumor.  It was more than 10x smaller that yours and mine.

I am sure you will get Herceptin.  Let us know how it goes with your onc next week.

Good luck.

Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Oct 22, 2009 07:28AM amyob wrote:

Dear Mommymac,

 I am still unsure of what I am going to do.  I started a thread called "help with treatment options after bilateral mastectomies" and have posted most of my worries there.  I know just how you feel.  Embarassed  Maybe we can help each other get through this.        

Dx: 9/19/09, Stage T1mic, DCIS, < 1mm microinvasion, ER+/PR+, Her2+, 0/2 nodes

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Oct 28, 2009 11:52PM amyob wrote:

Can someone please explain LVl and Ki-67?  I see that Ki-67 shows how "on the move" the tumor is and LVl increases your risk 4x, but I'm not clear on this.  Thank you in advance.

Dx: 9/19/09, Stage T1mic, DCIS, < 1mm microinvasion, ER+/PR+, Her2+, 0/2 nodes

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Oct 29, 2009 11:43AM, edited Oct 29, 2009 11:45AM by Liz08

This Post was deleted by Liz08.

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes

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Oct 30, 2009 02:00AM flash wrote:

ki67 is an expression of the proliferation

LVI is the lymphovascular invasion

multifocal multicentric IDC, DCIS, pagets et al. - er+,pr+ her2+++, mast,chemo, ooph, hyst

Dx 10/10/2007, Paget's, Grade 3, ER+/PR+, HER2+