Onkotype

26young

Did anyone have their onkotype done and if so what what your score. My score was 12. I was diagnosed in july, had mastectomy and now I will be starting treatment. My stage was early, stage 1, grade 1 no lymph nodes. My dr wants to start chemo, but I think I will just take tamoxifen. I was wondering if anyone had similar diagnosis.

Jen44

Hi 26young,

I was wondering why your doctor is recommending chemo.  If you are stage 1, grade 1 with no lymph nodes, and your oncotype is 12 I am not sure why you would be having chemo.  Here are the numbers I found for the oncotype test:

Using the Oncotype DX test, the researchers analyzed the genes in the tissue samples and assigned each sample a "recurrence score":

• less than 18: a low risk of distant recurrence (51% of the women were in this group),
• 18 to 30: a medium risk of distant recurrence (22% of the women were in this group), or
• 31 or higher: a high risk of distant recurrence (27% of the women were in this group).

Of course I am NOT a doctor so I don't know his reasoning.  I was just wondering if you knew why he/she was recommending the chemo with your cancer.  Regardless it sounds like your prognosis is very good which is always a good thing.  Still sucks having to go through all this though.  Keep us posted on your progress and good luck with everything.

Jenny

JoelKM

That is a low score. Your oncologist may be more aggressive since you are at such a young age. But even at that, the endocrine therapy wil be more important in the long term if you are ER/PR+. I'd get a second opinion on the chemo nevertheless.

prayrv

26young,

My score was the same as yours although my dx was grade 1 stage 2 ( I had 8mm invasive).  My onc and I discussed my options and we decided that it would not be worth it to put my body through chemo with that low of a score.  The recurence rate for me would be 8% after 10 years.  We chose tamoxifen.  I am comfortable with my decision.  You must be with yours as well.  Keep us posted.

Take Care

Trish

melody

I am still trying to get my insurer to allow the oncotype test. They are trying to say it is investigational while my oncologist says it is not.

 My oncologist did tell me that she would expect my score to be good (under 12) and so chemo would not be necessary, however I would be more at ease having the test since my invasive was only found BECAUSE I had a bilateral mastectomy due to high grade dcis and brca2+.  I have been told that an ooph and/or  tamoxifen/arimadex would be the way to go. I would definatly get another opinion. You certainly don't want to put your body through chemo  unnecessarily.

good luck

JoelKM

It makes no sense that insurance would challenge this, just from an economic standpoint. If you decline chemo due to the OncotypeDX score, they would save a ton of money on treatment. I would think that if anything, the insurance companies would be pushing for it instead of questioning it's use here.

melody

I wish that were the case. They have informed me that I can only appeal AFTER the test has been done. But if the deny it again then I have to come up with  3 grand! That is not in the cards for me. I am in the process of trying to figure it all out

nevaeh

My oncotype score was 21 (low intermediate); neither of the two oncologists I spoke with are advising chemo.  After much thought, I have decided that any benefits from chemo will be outweighed by the side effects.

If your insurance will not pay for the oncotype test you might check into joining the TailorX study.  I posted earlier about this (do a search for TailorX) where the study will pay for the test (at least that is the literature I have)

ellbe

My insurance company was treating this as out of network which meant the costs would be much higher. There was a point where we weren't sure if they would pay anything. I did talk directly with a financial representative from the company and they can work with you to help reduce the cost. She took down my financial information concerning income, housing and certain expenses. She gave me a figure much much less than the $3000. My insurance ended up paying 100% in the end. You might call the company and ask them about the cost and how you might be able to do the test.

rubytuesday

My insurance company didn't want to pay for it either and I had to appeal it.  The Oncotype DX people will work with you to get it paid.  I'm guessing mine was finally paid as I only got one bill and have never heard another word.  My score was 11 (7% chance of recurrence).  Chemo wasn't recommended for me (although it was BEFORE the test results came back).  I am doing Femara only. Your age may be playing a factor.  If you are young, the 'benefit' of chemo is that it may put you into menopause thus reducing the estrogen in your body.  I would get another opinion on your options.   Best wishes!

CarolC

On the company working with you, I just wanted to add my experience.  My onco submitted my request a little over a week ago and within 3 days, a representative named Gwen from the company called me to say that their experience with my group insurance company had been that they usually only pay part of it and that I might be left with a balance of $1000 +. She asked if that was ok and I told her that it would be a bit of a hardship with all of my other deductibles and out of pocket expenses I was accruing. At that point, she asked me what my income is and my mortgage payment and said that because of my debt to income ratio, I qualified for their assistance program. Much to my surprise, she said they would be paying for the entire test! She said that they believed that no woman should have to make the chemo decision without having this information. I am so impressed with this company - at the end Gwen wished me a low score!

Give them a call if your insurance company is balking and see what you can work out with them.

Now I am waiting for my results which she says take 10 days or so.

CindyZY

Blue Cross Blue Shield did not pay anything for my oncotype test. Many letters were written it was contested until the end and they finally declared they absolutely would not pay anything. They view it as "experimental". It is ironic that had I not had the test I may have ended up having chemo, costing them much larger sums of money. Go figure. Oh by the way my score was 21. Two oncologists were very on the fence about chemo, my final decision was tamoxifen only.

wishiwere

What state are you in, CindyZY?  I have blue Cross and they paid without a problem from the get go.  I'm in Michigan, so perhaps its the state you are in? 

rubytuesday

Mamhop, I also had pure tubular grade 2 (1.2cm and 1.6cm----two tumors) and my score was 11.......weird, huh?? 

Jaanee

My score was 40. :-(

I've got one more chemo treatment left then I'll have bilateral reconstruction.

I just received a letter from the OncoType people saying they are filing an appeal with my insurance. I too have been told that I qualify for their financial assistance if my insurance doesn't pay. I believe that Mayo Clinic is using grant money in order to assist in gathering data. Even though I was assured by the OncoType people that my insurance generally pays for the test I made sure I had a letter from them saying that I qualified for financial aide before I okayed the test.

I would have had the chemo anyway since my tumor was very aggressive. So in my case it was a waste of money for the insurance company. I would have refused the test except the onc told me it would determine whether or not my low positive for HER 2 needed treatment. Once the test results came back he said if I wanted to test for that I'd have to request it specifically. He swears he didn't tell me it would look at the HER 2 status. Really, why would I make that up? Does chemobrain start before you even have chemo?? I think the fact that the oncologist is a Mayo Fellow has something to do with it. Based on my path report I had already been assured by my surgeon, gp and another oncologist that I would need chemo.  

Anyway - You have enough to deal with. Don't go insane arguing with your insurance on this one. Contact the OncoType people and get their assistance!!  

MaryGirl

My score was 20.  Stage 1, clean margins, no lymph nodes.  At first my doctor recommended chemo.  But then when he considered I had chemo 25 years ago for Hodgkins Disease, he changed his mind and said the risk was too great.  Even if he had stuck with the chemo recommendation, I don't think I would've done it.  I'm on tamoxifen only and feel like I made the best decision with my circumstances.

I had to fight the insurance company too (Aetna PPO).  The OncoType folks appealed twice and were turned down.  Then I turned in a personal appeal.  The gal from OncoType helped me with the appeal letter content.  In the end Aetna paid 100%.  During the 9+ months of the various appeals, OncoType didn't ask me for a dime.  They were good people to work with.

Mary

ChellLvng

i just received my Onkotype score and it was a 75 which my Oncologist states is off the chart. Has anyone else been told that their score was that high?

BarredOwl

Hi ChellLvng:

No one has posted here since 2008, so you may not receive a reply from previous posters.

Please note that there are two different Oncotype tests:

(1) One for invasive breast cancer (to aid in chemotherapy decisions in certain patients with hormone receptor-positive, HER2-negative disease); and

(2) One for those with pure DCIS treated by lumpectomy (to aid in decisions regarding radiation therapy).

The scale is from 0 to 100 for both tests. However, they have different risk category cut-offs, as explained in my reply in the second link below.

If you have invasive breast cancer, visit this currently active thread:

Invasive test and Higher Scores: https://community.breastcancer.org/forum/85/topics/719253?page=1#post_1024034

If you have pure DCIS, visit this more recent thread:

DCIS test and Scores of 70+: https://community.breastcancer.org/forum/112/topics/843717?page=1#post_4700641

Best,

BarredOwl