Topic: Oncotype scores!

Fabulous news Matic!  Congrats to you and your mom.

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.

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

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

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

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 

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.

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

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?

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?

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. 

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!

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!