Oncotype Test of any value for ILC treatment option?

Illimama

My oncologist doesnt think the oncotype test is of value for women with ILC as very few women with lobular cancer were included in the data base upon which interpretation is made. As such I still insisted on having the test done. Waiting for results but am so confused about how much chemo will really help me as opposed to just Tamoxifen alone. Should I put any value on the oncotest result if I have ILC stage2 (2.2cm) grade1 no lymph nodes ER/PR+? She's pushing hard for chemo TC 4 doses.

toomuch

lllimama - That's interesting and I've never heard that before. I had an oncotype of 12 and then had 3 MO (2 at NCI certified centers) recommend chemo for me but I had 2 positive nodes with extracapsular extension (ECE.) My primary MO said oncotype was just one thing to consider. Others included age, menapausal status, tumor size and nodes. I'm sorry that your facing this tough decision. I would recommend getting a 2nd opinion.

momof3boys

I've never heard that. I had Oncotype done- score was 16. I did 4tc because of my age (43) and size of tumor. No nodes, no LVI

DianneNC

My oncotype score was 19, and I did 4 rounds of TC also. Size of tumor and family history (2 sisters with breast cancer) made my MO strongly recommend chemo for me. The ILC didn't even factor in that he ever mentioned.

Good luck with whatever treatment you choose!

gramwe

My oncotype score was 16 oncologist didn't recommend chemo. He also told 0/3 nodes my GP went over my reports with me 3 days ago and his report said 2/3 nodes. Like you I have questions to be answered. He lead me to believe that the oncotype test was the determining factor in my treatment plan, he never mentioned that it may not be so important with ILC.

Good luck with your decisions.

Anonymous

I didn't have the oncotype, but it was because I had positive nodes and my oncologist and I agreed we were going to throw everything and the kitchen sink at my dx inc. AC DDx4 and Taxol X 12.  So we didn't even consider it.

Claire

edwards750

Its amazing to me how Oncologists differ about the value of the Oncotype test. I did have it done - my score was 11 and I had a micromet in the SN which according to Genomic is considered node negative. I had IDC. My sister has lobular and also had the test. She had a mx and I had a lumpectomy and Rads. She didnt have rads or chemo. She takes Arimidex; I take Tamoxifen. I dont think there is a one size, fits all treatment plan.

cookiegal

I could be wrong about this but I thought ILC trends low

gemini4

My oncotype score was 16 (highest # in the low- risk group) so my oncologist didn't recommend chemo. She also said that lobular often doesn't benefit from chemo (and as such considered my score in line with that thinking). At the time I didn't know enough to ask why, I was just happy to hear it ... But it's an interesting notion.

wallycat

My first oncologist was SURE my oncotype score would be low because I was er/pr positive and it was ILC.  Surprise.  I scored 20.

I asked my  breast surgeon what he thought and both agreed that the benefit of chemo for me was only 3%-4%.  If I would have benefited more, they said it was worth the risk.  I was dx a few weeks before turning 50.  I did not do chemo.

Interestingly, there's a gal here that scored a 9 on her onco score and had a local recurrence.  She ended up having to do chemo and she posted saying chemo blasted her recurrence. 
Not sure if that means ILC does not follow the same pattern, can onco scores be improperly done? or is oncotyping just not as accurate as we wish.

Illimama

Thanks everyone for the input. Its all sooo confusing!!! The numbers the oncologist showed me just didn't seem worth the risk of going through chemo. She didn't mention the test during the consult, I found out about it here (Googled it after looking at everyones siggi!), feel like she isn't looking at everything. Its so upsetting that 2mm pushed me from stage1 to stage2! Anyway going for a 2nd opinion on 5/14. Will decide then....

Lily55

Hormones are almost more important than chemo for lobular cancer as it is almost always highly hormone positive.........and lobular seems to be less well researched than ductal, it is a definite category of its own, i was recommended chemo but refused it,,,,,,and I feel content with my decision. But it took a lot of heart searching



Good luck with your decision making.....

Robyn_S

As so many have stated, treatment for BC whether ILC or other types should be individualized and the many parameters to be considered include stage, grade, positive lymph nodes or metasasis. presence of hormone receptors, HER status, menopausal status, age, comorbidities and overall health.

Not routinely offered here in Oz, I had an oncotype result of 10. Being young 46yo, pre menopausal with a large tumour 9cm(and another smaller 1.6cm) positive nodes (no ALD by choice) and healthy I was advised to have chemo and rads. Being young and healthy means that I have recovered from the TX well. I now faithfully take femara and will for a long time. Individual circumstances have to be weighed and the risk/ benefit of treatment decisions are different for everyone.

Good luck ((hugs))

sgreenarch

Hi, just chiming in so you have plenty of opinions (and support.)



Never heard of not doing oncotype due to lobular dx. Mine was 17, node neg, dx at age 49. Had 3!!! Different oncologists emphatically recommend against chemo in my situation, so i didnt do it. Had unimx, oopherectomy, Zometa, did 2.5 yrs of tamoxifen, now on Femara. Doing well, thank God.



Get all your info then get several onc opinions. Hard decision to make on your own so see if you can get a consensus from a few respected oncs.

Wishing you love, luck, Shari

edwards750

I think its that Oncotype, like everything else, is no guarantee that you wont get a recurrence. Based on what their findings reveal about your tumor calculates what they believe to be the %of recurrence. Again nothing is foolproof. There was also a lady on this forum who had an 8 and had a recurrence. Dont recall if it was local or distant but a recurrence just the same. I feel guardingly optimistic about my chances but I also know I could be one of those unlucky ones too. Thing is we are all doing all we can to prevent bc from coming back but also with the knowledge we cant really control what happens. Researchers will freely admit they simply do not know why some women get bc and others dont kind of like other cancers. Why do some people who dont smoke get lung cancer and yet people who do dont. diane

BBs2

My oncologist highly recommended the Oncotype Test.  I am glad I had it.  It identifies the specific makeup of your particular tumor.  It does not generalize.  Based on my test, I was not a candidate for chemo or radiation.  My tumor was not one to respond to those treatments.  I have to take the oral drug anastrozole for 3 years and I should be good to go.  My percentage of cancer recurrence is less than someone who has never had cancer.  The Oncotype Test has given me great reassurance and made my daily life less stressful.  I would advise everyone to have the test done.

toomuch

BBs2 - I'm glad that you're comfortable with your treatment plan. I just want to clarify what the oncotype test can do. It looks at 21 genes in a way that can predict the chance of BC recurrence and the benefit of chemo in women with ER + tumors. The test has been validated in ER +, node - premenapausal women and ER+, node + (1-3 nodes), post menapausal women. It does not evaluate a tumors response to radiation. The test result is one more piece of the puzzle that MO's can use to develop an individuals treatment plan.

Gitane

The Oncotype test will give you a very accurate measurement for ER, PR, and Her2, and measures these in a different way from the path lab.  This might be valuable information for you and your oncologist to have as you make your decisions about treatment now and in years to come as new research results become available.

QuinnCat

toomuch - about your statement:  "The test has been validated in ER +, node - premenapausal women and ER+, node + (1-3 nodes), post menapausal women."

I'd never heard it differentiates between pre-menopausal and menopausal women, and that it only applies to node negative er+ women.  Can you elaborate?

toomuch

Kam - Here are links to the oncotype website:

http://www.oncotypedx.com/en-US/Breast/PatientsCaregiversInvasive/TestRightForMe/Eligible

http://www.oncotypedx.com/en-US/Breast/PatientsCaregiversInvasive/TestRightForMe/Eligible

I need to correct my previous statement, the study group included pre and post menapausal wome in the node negative group. I thought it was premenapausal women because it compared a Tamoxifen group to a chemo group.  The node positive group has only been validated in post menapausal women. That doesn't mean that the results would not be the same for premenapausal women but no study has been published in this population.

I know that my premenapausal status was one of the things that my MO considered when making a recommendation to me for chemo inspite of my low oncotype score. I also had 2 positive nodes with ECE.

QuinnCat

Thanks for clarifying!!

Rdrunner

It is also important to note re oncotype.. the research done for this test aside from the Taylor X which is still ongoing, was retrospective, also its important to note the inclusion/exclusion criteria for this research. Tumours over 5cm were excluded as were women with more than one tumour.

riverhorse

Oconotype 25 no chemo. I think it important to know that the results or recurrence rate predictions are based on statistics. That is a formula that can say tumors with certain characteristics are more or less likely to result in mets. i think the sample size for the original retrospective was fairly small, less than 1000. by way of comparison the MD Anderson Moonshot study looking at 46 genes is seeking to recruit 5000. I don't think the company , Genomics, provides much info on exactly how this analysis works. If it did any pathologist could look at the same tumor characteristics and reach a conclusion without paying for the test.



I think it is a useful tool, but other factors may be just as important. In my case it just added to the difficulty of making a decision. Without it I would have opted out of chemo. That was my final decision but the 25 score was a problem.

sgreenarch

Just a quick reply to rdrunner, I believe that having more than one tumor doesn't exclude women from having the oncotype test. In my case my ILC was multifocal (common w ILC) and the paths were similar. Did oncotype on the largest tumor.

I agree w BBs2 that there is a peace of mind element that goes along with this test. Of course no guarantees of anything down the road, but helpful in the decisions about chemo or not. Having a low end oncotype helped reassure me about my treatment decisions. I wanted to be treated very aggressively and practically begged my onc for chemo. In my case there simply wasn't enough benefit shown in doing chemo and I rest more easily with this decision.

Rdrunner

Sorry sgreenarch.. I should have been clearer, women with tumours over 5cm and more than one tumour were excluded in the retrospective research done to evaluate the accuracy etc of the oncotype test. 

Hollyshooters3

My oncologist feels Oncotype is very valuable in regards to how to best treat ILC. 

MMSS

There are other things to consider besides oncotype. For instance chemo tends to work best against cells that are multiplying rapidly so agressiveness scores matter. In my case while the tumnor was large the KI67 was just 2, it was grade 1 and the oncotype which was not done until later came back at 6. Because it was highly hormone positive 3+++ in all the cells the oncologist told me that hormone therapy would simply be much more effective than chemo would and it did shrink the tumor dramatically before surgery. I am doing radiation and may be on hormone therapy forever but I am enormously grateful to be spared from chemo. Sometimes I think that some oncologists sell the idea of chemo as the only way to be sure that you have done everything possible to fight the disease but it makes no sense to put your body through something like that if the stats do not support the idea that it will make a large difference. A MO sould be willing to show you the tables that give you the stats with and without chemo and then calculate that against your likely recurrence scores to show you what the real statistical benefit is likely to be. Good luck on your second opinion and don't hesitate to get even more that that if you aren't satisfied that they are giving you all the information that you need to make a good desicion.

sgreenarch

The chemo issue can be murky and it is incredibly difficult for those of us who fall in the grey area. Of course we want to throw everything at the cancer but that can at times be more of an emotional decision than an effective one. And suddenly we went to medical school? How are we supposed to make these decisions? I agree w mmss wholeheartedly that one should get several learned opinions to help make this decision. Another interesting thing to simply be aware of (but not paranoid about; I prefer to think that most oncologists have our best interests at heat and are largely honest) is the local culture re chemo. I heard a few times while making the rounds that here in Israel and in Europe they simply prescribe chemo less readily than in the US. It may be that American medicine is more cautious (not a bad thing) in the grey area. I also don't know if that's just an impression oncs get at their yearly meetings or if it's based on any real statistics. I do think the oncotype test has been very helpful in our decision making process. Not easy, but whichever way you choose, most important is to make peace w your decision, get through treatmt and move on toward living. BC has taught me not to look back and rue mistakes pre BC, couldas, shouldas, but instead to live best I can each day forward.

chasingdreams

HI All,

My Mom's MO did NOT rec the oncotype testing be done d/t her age, ILC, ER/PR+ HER-, neg node status... and fact her tumor had been there for awhile, was not fast growing, though it was large. He felt strongly it was Hormone fed and that chemo would not offer any help with the BC, but do more harm- to her body in general.

He felt it was better to get started on Radiation and then Hormone Therapy. The only test she got done before Rads was a Bone Scan, and she has to date  not rec'd the outcome of it, though the Radiologist *?* doing the scan felt her hip showed something! This is what she reported to me. I remind her to ask her RO who she sees for barely 5min each wk, and she has never brought it up (i am not there to do so).

She has 2wks left of Rads, I need to remind her to make appt for the MO, and then she has to decide on the type of HT.... Her 33 treatments have left her tired, but that is about it, other than the RadRash!

*to the original poster* If you are not comfortable with what your MO is stating etc, you are allowed a 2nd opinion, and should most definitely seek one out--- for peace of mind if nothing else! My Mom met with a MO who suggested no Chemo, but did order the Oncotype- stating it would be low#- and the RO agreed no Chemo needed, so then the 2nd opinion MO and the MO she wanted to treat her, also said same thing, No Chemo, but dont waste time getting oncotype either. She feels confident in her treatment plan. And that is what everyone needs to feel- they need to feel they are making the best informed choices for their specific BC circumstances etc....

HUGS

Illimama

Here is an update... My oncotype came back as 8, the oncologist now informs me that after reviewing the result with other doctors on the cancer team, chemo would be of little or no benefit to me. Also strangely enough, I no longer need to have rads due to my double mastectomy! Not sure why she suddenly changed her mind on that...I went into the consultation with my double mastectomy!!!

So she is now recommending 5years of Tamoxifen only. Huge difference from 4rounds of TC followed by 30 rads and then 5years of Tamoxifen.

I had a very strong gut reaction that I didn't need to have chemo and I feel the oncotest confirmed that. I won't be going for a 2nd opinion now. Just wish this test had been performed initially and am thankful that I didn't blindly follow the oncologist's recommendation.

Illimama

Here is an update... The oncotype came back as 8. My oncologist now informs me that after reviewing the result with other docs on the cancer team, that chemo would be of no benefit to me.



Also I do not need rads because I had mastectomy. This one baffles me as at the time of my consultation with her she was adamant that I needed rads regardless of the mastectomy. Don't know what suddenly changed her mind about that.



Anyway she is now recommending 5 yrs of tamoxifen only (huge difference from 4 rounds of TC followed by 30 rads and then 5 years of tamoxifen).



I am thankful I followed my "inner voice" and pushed for the test. Without that information I was slated to begin chemo on 5/15.