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Topic: Oncotype scores!

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Apr 1, 2008 11:52AM

matic22 wrote:

Hi all ladies with ILC!

I just want to tell you that we have got the results and the scores came back 16, which means 10% is the average rate of distant recurrence in 10 years.

Well, these scores are great, she is in the low risk group, so it is now good to continue with hormonal therapy beyond 5 years ,with Femara maybe.

I hope you are all doing great. Our pathologist is very happy. We also have done another test for another patient, who is a doctor, and also low risk group-so no need for chemo;)

Kind regards and be well:)

Matic from Slovenia

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Apr 1, 2008 05:31PM wallycat wrote:

Excellent.

I think you mentioned your mom did chemo, no?  

Still, 16 is fabulous...I wish that were my score Wink .

May she, and all of us, get many, many healthy years! 

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Apr 1, 2008 08:37PM Lynn12 wrote:

Fabulous news Matic!  Congrats to you and your mom.

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Apr 2, 2008 05:51AM matic22 wrote:

Hello dear wallycat and Lynn12!

Thank you so much for support words. Yes, she did chemo, with an anthracyclines, but I did not know so much about her tumour type back in 2004 and also about oncotype. If that was today I definitely would not let her do chemo because I know what chemo can cause and in this case there is no benefit for her, only hormonal therapy. I have assumed this from the very beginning and I have been right all the time.

Back in 2004 her oncologist said to her that her prognosis was favourable but because of 2 micro positive nodes, chemo is recommended. I have to say that now when we live in the molecular era, this is so misunderstandable to have a look at those nodes, which mean nothing to me. The only thing that stage tell you is the time of discovery of cancer .But oncotype studies have prooved that even metastatic cancer in low risk group can have a very good survival, so please, do not let your oncologists think or say you have worse prognosis only because you are node positive, let s say 10 positive nodes. I would not treat my patients in low risk with chemo because there is no benefit for them.Only aggressive hormonal therapy!!!

This is the point becase it is target therapy.

Yesterday there was a friend of my Mum at our house and she said she did know one woman who had very tiny tumour and no nodes, she unfortunately died within 2 years. So, I guess this was a very aggressive tumour.

So, please, those who are node positive, do not make your life difficult because of some positive node, it really does not matter for your prognosis.It is more important to have a look at your biologic profile together with your lymph nodes.So, if you have an aggressive tumour, for example, ER,PR- grade 3, mitotic count 3, Ki-67 high, and node positive, in that case you need to be very aggressive with chemotherapy with anthracyclines and taxanes.

Thank you again for your listening and kind regards;)

MATIC

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Apr 6, 2008 01:51AM Gitane wrote:

Please be careful about putting your life on the line completely based on the OncoDX score. While a low score indicates that the cancer may not have some markers of a tumor destined to relapse, it is very far from being the last word. The formula they use, the genes they selected, all are still very much "early stage" in the genomic world, and experts in other countries seem to be questioning that we have put so much faith in them at this point. I am far from knowing what I would need to to judge, I'm just sharing the opinions of others in the field. Do not discount the fact that a high grade lesion may need chemo, regardless of size or negative nodes. Be careful about thinking that chemo may be too harmful; it may be the only thing that saves your life if the endocrine treatment doesn't work. ER+ status does not guarantee a response, and certainly not a lasting response in many cases, especially PgR negative cases. The risk for ER+ BC lasts for many years, and we are far from knowing what markers to use to determine risk with any precision. I am worried about what chemo may have done to me. Yet, I feel I needed to do it, and as so many of you have said, we have to make a decision we can live with. I say this hoping that it does not dishearten those of you with low scores, they are certainly something to be happy about.

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Apr 7, 2008 09:50PM texas94 wrote:

I agree the Oncotype test is only one factor determining someone's treatment. I had no idea how different all breast cancer cases are until I was diagnosed myself!  However, it's a wonderful advance in breast cancer treatment and just one more factor to consider when determining care. My score is 20 (intermediate), and my onc does not recommend chemo.  I had a bilat mastect, had no involved nodes, and my ILC was 1.4cm and low grade. Not to mention ILC tends to be less responsive to chemo than IDC, which can be both a blessing and a curse, dependent on the case.  My onc (and her 8 colleagues) agreed I would only need 5 yrs of Tamoxifen.

EHK

ILC 10/2007 age 36 (BMX, 410 gummies, 3 ½yrs Tamox, Oncotype 19). ILC recurrence 6/2014 age 43 (6mos Taxol & FAC chemo, ALND, LUMP, biopatch left sac to keep implant in place, 33 Rads, Oophorectomy & 10yrs Femara). I also had Thyroid Cancer in 2004! Dx 10/19/2007, ILC, 1cm, Stage IB, 0/1 nodes, ER+/PR+, HER2- Dx 6/19/2014, ILC, 1cm, Stage IIIC, 11/19 nodes, ER+/PR+, HER2-
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Apr 7, 2008 11:03PM LauraGTO wrote:

matic - That's great! I am so happy for your mum...keep us posted...don't forget about us. Best wishes to both of you.

Laura

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Apr 8, 2008 05:26PM matic22 wrote:

Hello ladies and dear LauraGTO!

Thank you, Laura for your kind words. It means a lot to me;:)You and dear SherriG were the first ladies with bc when I first came here on these boards about 3 years ago:)

Well, I know you have to look at all prognostic markers together and not only oncotype BUT it seems that onco scores provide much more reliable and real prognostic information than every other test. That is the reason I point it so much out. There were also done studies when they compared grade,size and nodes to oncotype scores and scores were the strongest predictor of recurrence.That is the reason why some lady with grade III can also have low risk score, and on the other hand another one with grade I-II high scores, because you can just not know which genes are more expressed in individual woman-and there is also a lot to do with invasive genes, not only with HER-2 and ER group genes, but also imune genes-CD68 and the others.So,that is the reason why I believe this is the future of individual treatment plan and prognosis. As I have already said if that was today I would not let my mum to go on chemo with these scores.If she was in high risk group, then yes, she has some vein irregularities in that arm chemo was given, for instance,which was caused by Epidoxorubicin.I just want to point out chemo is not recomended for those with low risk group becase hormonal therapy is the target therapy that improves survival and not chemo.

Kind regards and best to all of you:)Stay all of you healthy:)

Matic

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Apr 8, 2008 09:46PM revkat wrote:

Matic,

You don't know how hard I tried to get an oncotype test even though I was node positive. But I was told several times it wasn't possible even if I would pay for it myself. I'm with you -- the future is in the genes of the individual tumors. And even though I'm doing chemo, in the back of my mind I wonder if it really will help me at all. The only thing that pushed me over to do it was the reality that I can only act based on today's information, not what we will probably know in 5 years. As someone once said "it was the best of times, it was the worst of times". That is certainly true of breast cancer research right now. We are just so close to being able to individualize treatment. But not. quite. there. 

Dx 1/28/2008, IDC, 2cm, Stage II, Grade 2, 1/20 nodes, ER+, HER2-
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Apr 9, 2008 12:07PM matic22 wrote:

Dear revkat!

Well I understand you because it was the same with us at the beginning, but then I wrote to them I am almost a doctor and that I understand everything and that my mum will eventually change her therapy beyond 5 years and that I need to know what are her scores of recurrence.Then they said if the oncologist thinks it is okey to be done, that we can do it.And we payed it by ourselves.

Mother"s oncologist is very I just do not know what word to use to describe her-she said to me what would I do if the scores came back high, I was very angry and said to her I was dissapointed in her and then she saw actually what I meant to say. I added to her the scores were NOT going to be high, she just shut up!

Later on I did not even tell her the scores, and she left from our country to Amsterdam, which I am also glad for that.And another thing I would point out here is that these patients, on which oncotype dx breast cancer assay was done extensively were actually micro node positive(the majority), because in the past there was no so good tehnicque for staining micro deposits or isolated tumour cells, only macro things.Today it is different.

I can say at our Insitute the younger oncologists also think these genes are the best way to predict prognosis and treatment plan, for them size for example and nodes do not mean anything.They do not even look at tubules within the grade, only mitoses.The older oncologists are more old-fashioned and they decide about treatment plan based on size and nodes, and there are many cases which I looked at them when I was doing a research last year and year before, who relapsed because those patients were not given adjuvant chemotherapy based on aggressivenes of their tumours but only on size and nodes.So,please, I am very accurate at these things and if I were sick, I would not let to treat me like this.I have been very surprised many times because of those mistakes.

P.S.:If you would really like to do oncotype assay,ask somebody you may know in your insitute to help you and then she/he writes a requisition of you to genomic health.You do not need to explain everything to them.well, I did and that is the reason why it took so long to doing the test.

If you are kind to them,I am sure they will help you as well.

If I were your onco, I would definitely help you and would fill in the requsition form.;)

Kind regards.,MATIC

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Apr 9, 2008 12:34PM TenderIsOurMight wrote:


Several years ago, at a U.S. government-sponsored breast cancer survivorship conference, I pointed out the potential utility of Oncotype Dx in node positive as well as node negative patients. My public comment was quickly shut down with "there is no role for Oncotype DX in the node positive patient at this time". Precisely the point, there wasn't, yet some two years later it is now being actively investigated. I say this not as projecting myself as a rocket scientist, in fact I'm not even a scientist, just a patient. Yet it seems to me that obvious research takes too long to surface, a fact that Matic and others correctly point out, and one I hope, we as patients, will advocate against through the various Foundations and Congress.

Thank you Matic, for noting that Paiks work, not by intent but by practicality, did not include the IHC node positive cells. I did not know this. Maybe this is why now the TailorRx trial has lowered the recurrence score (RS) numbers for participation in the intermediate randomization. I don't know.

Keep trying everyone, keep bringing up what you think is right, advocating for yourself. Through our individual voices, a unison symphony may be heard. And thank you Matic for all of your contribution here and of course, to your future patients and breast cancer knowledge. You will go far.

Warmly,
Tender

It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)
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Apr 9, 2008 05:32PM DoreenF wrote:

Hi Tender -  I was on a conf call with the lead guy for the TailorX trial many months ago ...  he explained that they were using different scores for TailorX simply because they wanted to study the mid range group and wanted to include those at the top of the low risk group and the bottom of the high risk group in the group being studied ... as the role of TailorX is to determine the cutoff point for what oncotype score should be treated with chemo. 

they want to make sure that people with higher scores are not under treated (by not including chemo when warranted) and that people with lower scores are not over treated with  chemo (by including chemo when its' not warranted).  That's how it was positioned anyway...

Doreen 

"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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May 29, 2008 09:21PM VBG wrote:

Hi All,

Got my oncotype score and it was 24, so after all my other treatments chemo is now in my future.   I was a low grade, found very early cancer - twice in 18 months.  I was ILC with some IDC as well.  My surgeon felt that my surgeries and AIs would be sufficient.  The real decision to do chemo was the oncotype score in conjunction with the fact that tamoxifen did not work for me after my initial DX.  Therefore my onc felt that hormonal treatment alone might not be sufficient.  All indicators, high metabolizer of tamox/PR +, would have suggested that hormonal therapy would work for me........but with BC there are no guarantees.  I am now doing chemo as an extra "insurance policy" so that I have done all I can to beat this thing for good.

So my hope is that all of you that fall into the "intermediate" scores insure that you do not push off chemo too readily given my experience a low grade/stage one/no nodes does not always mean we are "safe".

Wishing you all the best!

Valerie

recurrence 12/07 IDC/ILC stage 1 grade 1 6mm; 4/29/08 bilat/recon/ooph chemo starts 6/11/08 Dx 5/21/2006, ILC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 29, 2008 11:28PM nash wrote:

Wow, Valerie. That's really interesting. On paper, you should be the Tamoxifen poster girl, but that's obviously not the reality. Thanks for sharing your story.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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May 30, 2008 07:00PM Gitane wrote:

Hi Valerie, Your score of 24 is an intermediate score, but your decision to have the chemo sounds reasonable to me. Let us know how you are doing.

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Jun 3, 2008 12:37AM priz47 wrote:

I am new to all this. I am ILC, > 1cm ( exacts not known yet, node negative, ER+. I asked the BS if she would do an Oncotype and she said she wasn't sure if it would help with ILC. I am still awaiting BRCA test back as family hx is quite extensive. i feel like I should push for the Oncotype, but is it necesary?

D

Dx 4/22/2008, ILC, 1cm, Stage II, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jun 3, 2008 08:12PM bethrose wrote:

I have just been diagnosed with ilc and was wondering what should I look out for and ask. Also, I want to go to LA or surrounding areas for a second option. I wasn't sure if I should do City of Hope, UCLA Breast Center or John Wayne Cancer Center? any thoughts. Also, what does infiltrating carcinoma measures 11m mean?

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Jun 3, 2008 08:12PM bethrose wrote:

I have just been diagnosed with ilc and was wondering what should I look out for and ask. Also, I want to go to LA or surrounding areas for a second option. I wasn't sure if I should do City of Hope, UCLA Breast Center or John Wayne Cancer Center? any thoughts. Also, what does infiltrating carcinoma measures 11m mean?

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Jun 3, 2008 08:12PM bethrose wrote:

I have just been diagnosed with ilc and was wondering what should I look out for and ask. Also, I want to go to LA or surrounding areas for a second option. I wasn't sure if I should do City of Hope, UCLA Breast Center or John Wayne Cancer Center? any thoughts. Also, what does infiltrating carcinoma measures 11m mean?

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Jun 3, 2008 08:12PM bethrose wrote:

I have just been diagnosed with ilc and was wondering what should I look out for and ask. Also, I want to go to LA or surrounding areas for a second option. I wasn't sure if I should do City of Hope, UCLA Breast Center or John Wayne Cancer Center? any thoughts. Also, what does infiltrating carcinoma measures 11m mean?

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Jun 3, 2008 08:12PM bethrose wrote:

I have just been diagnosed with ilc and was wondering what should I look out for and ask. Also, I want to go to LA or surrounding areas for a second option. I wasn't sure if I should do City of Hope, UCLA Breast Center or John Wayne Cancer Center? any thoughts. Also, what does infiltrating carcinoma measures 11m mean?

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Jun 4, 2008 12:02AM nash wrote:

Hi, Beth. Do you mean 11mm or 11 cm? Probably 11mm, which is 1.1cm, and which is sort of a medium sized tumor. Inflitrating means the tumor is invasive (vs in situ). Carcinoma means cancer.

I know several people who have been very happy with City of Hope. UCLA has some top docs and would be fine for a second opinion, too. I don't have any experience with John Wayne. You might want to start a separate thread on the Just Diagnosed Board on this topic, and that way more So Cal girls will see it and respond. 

As far as what to look out for and ask, you need to know the ER/PR and HER2 status of your ILC, which will most likely be ER+/PR+ HER2-, although there are some triple negative ILC tumors and some that are triple positive. Pretty rare, though.

If after your sugery you are told your lymph nodes are negative, you should request to have Oncotype DX run on your tumor. It's a test done on a tissue sample that analyzes the DNA and gives you a score that puts you in a risk recurrence group. It also tells the onc whether your particular tumor will be more likely to respond to hormonal therapy or chemo. You can read more about it at www.oncotypedx.com. The test can only be done if you are ER/PR positive and lymph node negative. 

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jun 4, 2008 01:22AM Gitane wrote:

Priz47, Knowing the OncoDX score may help you decide if you want chemo. Some people just want it because they want to know more about their cancer. I think the OncoDX company, Genomic Health, has enough data on different types and stages of BC to give you a reference range that would help you interpret your score. Their web site has some studies and info you might want to review.

bethrose, Here is a California referral for you. Dr. John Glaspy, Oncologist, at UCLA (310) 794-4955, 100 UCLA Medical Plaza Suite 550.

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Jun 4, 2008 03:01PM swimangel72 wrote:

My Oncotype DX score was also intermediate (22) and at first my oncologist was just going to give me Arimidex for 5 years since my tumor was .9cm, ER+/PR+, clear lymph nodes and I had a mastectomy. However, once he finally received my FISH report showing I was Her2+ (which was a month overdue because of some administrative foul-up) he immediately changed his treatment plan and put me on Herceptin and Navelbin. He said the Her2+ status totally changed everything - that the tumor was more aggressive than originally believed - that the "motor" driving its growth was the Her2 protein. I am still confused about his change-of-treatment because I would have thought that the Oncotype test would have INCLUDED an evaluation of my Her2 status - and that a score of 22 would have been "low-intermediate" meaning I could skip chemo. But my onc did say he treats all BC very aggressively (like myself, which is why I opted for a mastectomy) - so here I am looking at 3 more months of Navelbine and a year of Herceptin. Oh well - better to be safe than sorry later on!

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, Right, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2+ (FISH)
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Jun 4, 2008 04:59PM nash wrote:

Swimangel--I'm confused, too, about Oncotype and HER2. I've read that the Oncotype gene assay includes HER2, but then I've read that the test is only designed to be used for HER2 negative women. You definately need the Herceptin no matter what, and HER2 tumors tend to respond very well to chemo, so I think your onc has a good plan of action.

I think the important thing to consider is that the Oncotype score is just another decision making tool--it can't really stand alone as a decision driver.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jul 20, 2008 01:06PM GaPastor wrote:

my Oncotype report did not include a HER2 score- only ER and PR

in fact, ER and PR scores have been reported by 3 labs and all are different!

 ---------

Genomic      had ER 9.2, PR 8.5

lumpectomy had ER 75%, PR 80%

biopsy          had ER 85%, PR 69%

its interesting to note that even relative to each other, they are different- but they all agree they are ER+ and PR+ which is what is important after all.

what i have decided to do is just make the best decision on what I have, stay connected, and don't look back!

  

Dx 6/13/2008, ILC, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-

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