Oncotype DX Test

pjones · September 2010

7/13/10 Yearly mammogram was suspicious. Followed up 2 days later with another mammo, sonogram then needle biopsy. 2 days later the results indicated a small cancer and 1 cyst. MRI ordered the following week Lumpectomy on 8/13/10 (excision with wire guided localization). Tumor size 1 cm (tumor: pT1b) Sentinel Node biopsies negative (snpN0 (0/5). ER 99%, PR 5% Her2/neu: negative.

As per my surgeon, I am to undergo 6 weeks of radiation 5 days a week and be put on Arimidex for 5 yrs after radiation has been completed.

I retired from my job 7/30 and am moving out of state 9/15. I have scheduled with a radiation oncologist near my home out of state on 9/20.

However...I had my first visit with a medical oncologist yesterday and was told about the Oncotype DX test whose resulting score can indicate the probability of recurrence. This test has been ordered and I am a nervous wreck as if my score is high, chemo would be recommended and it would have to be done before radiation.

Of course I'm hoping for a very low score but what if it isn't. I have not prepared, nor do I think there is time to prepare, to get chemo in the middle of a move to an area a good distance from major cancer treatment centers. I have a call into my surgeon to find out why this test wasn't ordered at the time of surgery - the results would have been back by now! Also, the test would now be done on archived tissue. I didn't even know that the tissue was kept. How is it stored and is it a viable a test specimen now as it was on 8/13 (surgery date)? Had I known about this test, I could have postponed the move if chemo was needed.

Any advice?

Thanks in advance!

LoriL · September 2010

I don't have any advice for you other than to give you a ((((hug)))) and just try to take it one day at a time. I know how hard it is to plan things out and then have a "wringer" thrown in there. It's frustrating and hard to wait. But, I also know that things always just seem to have a way of working out in the long run.

The Oncotype DX test is a very valuable piece of information, so I'm glad that you are having it done. I'm not certain, but I believe the tissue is stored in a chemical preservative at the time of surgery. It's not unusual for it to be sent for the Oncotype test a few weeks after surgery. My Oncologist had discussed this test with me at my first appt. with him (prior to surgery), but didn't actually order the test until I met with him a few weeks postop. Like you, I had assumed that the surgeon would have ordered it at the time of surgery. But, I found out that the surgeons don't usually even get involved with that particular test. It's the medical oncologist that makes that call. There is a whole insurance approval process attached with it as it is very spendy, and also there are various research studies available that some oncologists are involved with.

If I recall, it takes 10 days to get the Oncotype results back. Also, if it's any comfort to you, if you have a stage 1 tumor, the odds are in your favor that the Oncotype test is going to be lower. I don't know what the percentages are, but I do know that it is NOT 50/50% chance of being low versus high.

Good luck to you and hang in there!

pjones · September 2010

LoriL - Thank you for your quick response. I've been healthy to date so this experience is like a bolt from out of the blue as it probably is for most. The info you provided is very helpful and comforting. I'm trying to be positive in spite of the drama of being newly retired, in the midst of a move and recouping from surgery. I do feel VERY lucky that the cancer was caught when it was.

Thanks again.

raincitygirl · September 2010

pjones and LoriL - I am in about the same situation as pjones as far as timing and diagnosis. I also was surprised to learn of this needed test on Friday - chemo had never even been mentioned for me and now the med onc says possibly it will be needed - it will be two weeks before I know those results. Frustrating! But, I also feel so very fortunate that it was caught early. Recovering from lumpectomy and SNB has not been bad at all. I feel like I can face the rads but the chemo scares the heck out of me. It will be two long weeks or longer because of Labor Day Weekend.

DiDel · September 2010

Hii Ladies!! I was sort of in the same boat as you all in I didn't really understand the ramification of the Oncotype DX score. Chemo was never mentioned to me as a possibility in fact I was alway told I was not going to do chemo. I don't think it was intentional I think that my rollercoaster ride was a fast one, one day I was doing a lumpectomy next thing you know I had not 1 but 3 tumors all very small and I was facing a RMX which I had in December 2009. My primary tumor was 9.25mm and well differentiated grade 1, during final pathology a 4th tumor was discovered 1mm and was moderately to poorly differentiated grade 2. I've found that usually the grade of your tumor usually matches your score. If you are grade 1 you will likely be in the low range, if you are grade 3 the high range ALTHOUGH this is where the test comes in handy. Oncotype helps determine if the chemo will be benefitial on your cancer. Instead of just saying oh you're grade 3 of course you will do chemo they analyze your tumor markers to determine if chemo will help. NOW with that said, here's where I fell, my score was 17 highest end of the low range. So then it just becomes a personal choice of whether you do chemo or not. I am the kind of person that worries so I wanted to ensure that I did all I could to fight this. I had a 3-5% benefit from chemo and while that sounds small when you talk about your life and you've gone through surgery you just figure you're almost there a few more steps to peace of mind. I did 4 rounds of Taxotere and Cytoxan and it was very doable. Of course while you're in it you think it will never end, but once you're through it (3months) you're like WOW that went by fast. I won't lie losing my hair was the worst thing but I am hoping it was a small price to pay for kicking cancers A$$!!! I sort of decided that I was sitting out 2010 and 2011 is a NEW HEALTHY START!!

Good luck with your scores, here's hoping they are low!!!!

DiDel · September 2010

OH Also Oncotypedx.com will give you more information about the test and how to read the results.

pjones · September 2010

Hi DiDel and Jodimaca,

Thanks for your feedback. I'm in the middle of packing for our out of state move and to all new doctors. I do have radiation scheduled in our new town but the results of the Ocotype Dx may affect my treatment. I may not get the results prior to our move. I spoke to my surgeon who was surprised that the oncologist ordered the test. She said my ER is 99% and thinks the test was ordered based upon the grade which was 2. We both agreed that knowledge is power and that the test results will provide more information as to how my treatment is to proceed. So, I'm up in the air like you Jodimaca, just waiting...

Regards and be well,

Pat

Anonymous · October 2010

Hello Ladies! I had the Oncotype DX test and my score was an 11, 7% chance of recurrence, but mine was based on me doing 5 years of Tamoxifen. Anyone know how to determine the scor if you don't do the Tamoxifen? I checked the site and couldn't find that information. Of course it was a question for my oncologist, but didn't notice that until I read through my copy of the report at home.

Appreciate any insight or direction on this... THANKS!!

In Pooh's Grand Adventure, Christopher Robin says it best when speaking to Pooh,

"You're braver than you believe, stronger than you seem, and smarter than you think."

Sherryc · October 2010

k9kim--I was just watching a video on recurrance on the Susan G. Koman website. The doctor that was being interview stated that if you ar ER positive and did not take tamoxifen that your chance of recurrence was 30% to 40% more than if you take it. So with your recurrance rate at 7% that would raise you to 37% to 47%. I asked my med onco what percentages are good and he said if he can get someone under 30% that is great. Hope this is helpful and you may want to watch the video. Good luck with your decision.

lisa-e · October 2010

Here is how you determine what your chances of recurrence are if you don't take tamoxifen, given a particular oncotype score. Tamoxifen is supposed to reduce your risk of recurrence by 50%. so this the formula you would use to figure this out:

if RNT = your chance of recurrence with out tamoxifen and ONC = chance of recurrence derived from the oncotype test

RNT = ONC/0.5

Therefore K9Kim's chances of recurrence would be 14% or 7%/0.50.

The figure Sherry gave way over states K9Kim's chances. The doctor being interviewed was giving a relative statistic, not an absolute one.

kira1234 · October 2010

lisa-e,

I have a question I see the 7% chance, but how does the onco test come up with the first number? I see k9Kim was 11% to start with.

lisa-e · October 2010

Kira, KpKim's oncotype score was 11, which predicts a 7% chance of recurrance. In otherwords, the 11 was the raw score, not the percent chance of recurrance. Both are given on the report you recieve after having an oncotype test run.

LoriL · October 2010

Sherryc- It's my understanding that the 30% increased risk of recurrence would be 30% of the 7%. In other words, if my chance of recurrence with taking tamoxifen is 7%, then if I choose to not take it my recurrence risk goes up to 9.2% (30% of 7% equals 2.1%. So 7% plus 2.1% equals 9.1% Not 37%) Make sense?

It's all so terribly confusing sometimes! My oncologist has repeatedly told me that all of those calculations don't take in to consideration other factors that have a HUGE influence on recurrence rates- such as body fat levels, exercise, healthy diet, etc.

lisa-e · October 2010

Lori, your understanding is right. I think the only thing in question is how much of a (relative) advantage tamoxifen give you - I've read 50% and have been told 50% by my onc. So I am wondering about the 30% to 40% range Sherryc mentions.

I am taking tamoxifen, so I like the idea of 50% a lot more.

kira1234 · October 2010

If I understand it right using the AL'S will reduce the risk a bit more. I'm hoping it does because I had to stop chemo after my 1st treatment, and my score was 24 with a 16% chance of it coming back.

I would love to know if anyone has any idea how much 1 chemo treatment helps if at all.

lisa-e · October 2010

I think the AI's give another 5% advantage or so...

kira1234 · October 2010

lisa-e, Thanks that makes me feel a bit better. I'll take anything at this time.

LoriL · October 2010

lisa-e, Thanks for your info.!

As of last week, I'm taking a 3 month break from Tamoxifen (after being on it for 14 months) because of side effects. So, I personally like the idea of only a 30-40% benefit instead of 50%! :-)

I'm tentatively planning on just staying off of it unless I chicken out and decide to restart it. My oncologist has told me that the little benefit that I'm gaining from it right now is not worth the side effects (weight gain, insomnia,etc.) that could in theory increase my risk of recurrence anyway. He said that the stress on my body from the side effects are likely negating the benefits. It's a tough decision, though.

Sherryc · October 2010

Thanks for the clarification. If you want to watch the video i saw it on the Susan G. Komen website. It just gave percentages (30-40) but did not go into the calculations of determining your outcome. So all the information here is very helpful. THANKS

Oncotype DX Test

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