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New Member, Anyone ever have Oncotype DX test?

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Posted 2/28/2005 3:13 PM (GMT 0)
Hi,

 

Brand new member here.  I was diagnosed with invasive lobular carcinoma from a lumpectomy January 24, had partial mastectomy January 31 with lymph node dissection.  It is a stage I cancer with no lymph node involvement.  The tumor was only 1.6 cm. 

 

When I went to the Oncologist for the first time she recommended a fairly new test (only been available for about a year) called Oncotype DX for determining the need for chemo.  From what I've learned they use a sample of tissue from the biopsy to determine genetically what your chances for a recurrence would be.  Giving them a better idea of who should have chemo.  It is an expensive test at $3,500 and not all insurance companies pay for it.  Luckily mine did.  But it takes 2 weeks to get the results back.  So now I'm in the waiting period.  I was told I will have radiation regardless of the results and if I need chemo it would come first. 

 

I'm just curious to know if anyone else on here has had the Oncotype DX test.  If you have, what were your results?  Anyone have any other info I could use?  I welcome all comments, as I am reading everything I can get my hands on.  I'm trying to be as informed and educated as possible.

 

Thank you,

Mia 

Posted 2/28/2005 4:41 PM (GMT 0)
Hi Mia, welcome! The third post (gray'd out) is our roll call, you can get a sense for who we are and our stories.

Many of us are "old timers" and did not have the advantage of this test. I sure wish I did! I have heard about it and meant to ask my onc at the last visit, but I forgot.
Not sure I can offer much except a cyber-hug and welcome to our group!

Lori
Posted 2/28/2005 7:38 PM (GMT 0)
Thank you for the welcome!  I think from what I've seen so far on this site I will be here quite often.  I will be attending a support group for the first time tomorrow.  But I'm not sure it will provide what I'm looking for.  This seems to have all the information I would ever need.  With of course the exception of experience with the Oncotype DX.  But I knew with it being so new there wouldn't be lots of others to talk to about it.  I really just need to know others going through the same things as me.  This is a nice way to feel informed, less alone and empowered.

 

Thanks for being here with me!

 

 

Posted 2/28/2005 8:21 PM (GMT 0)
As I understand lobular breast cancer, it is different in that it tends to mirror in the other breast. This was not my diagnosis, but a very dear friend of mine was diagnosed with it about 14 years ago. She had 23 of 25 nodes positive, so her prognosis from the start was not real great. However, she had a bone marrow transplant and a bilateral mastectomy. She did well for about ten years and somehow talked her doctors into allowing her to have some estrogen to lessen her terrific temperature swings. Sadly after taking the estrogen for a couple of years she had a recurrence that was very aggressive. Your tumor is not large and stage I is good. I will be interested to learn what your test shows. My daughter was diagnosed and had early stage six years ago. Her oncologist told her because of her age (39) he was strongly recommending four chemo treatments. She is showing no signs of cancer now and is certainly living a busy life, she has horses, cattle, works outside the home and has two kids at home. On the go all the time.

By sharing new treatments and information, we all learn lots here. When I was diagnosed eight years ago I was totally in the dark and followed doctors suggestions for the most part. We know now through our friends here to learn all you can and question the doctors when you feel you need to. Some doctors make statements like, "you are too young to have breast cancer", which we all know now to be totally false and very misleading. So ask any questions you have we will try, even if we don't know the very latest in technology we will learn from others like you. If you noticed there are now two of our group that will be on a brand new drug.

Hugs of welcome, Mary K. (MK)
Posted 3/7/2005 8:56 PM (GMT 0)

Hi, Mia-

I'm in pretty much the same boat you are: small tumor, no positive (or at least no "reallly" positive) lymph nodes. I had one very conservative oncologist who recommended chemo, and another who thought I could skip it. I had the Oncotype DX test in January as a sort of 3rd opinion. My recurrence rate came back at about 12%, which was low enough for me to be comfortable skipping chemo and taking Arimidex. I am still arguing with my insurance company, Aetna, over payment for the test. They have a clinical bulletin in which they list it as "experimental", but that bulletin predates the New England Journal of Medicine article in Dec. 2004 that validated the test. I'm keeping my fingers crossed that Aetna pays, but even if they don't, I'm happy I had the test done.

Good luck,

Lauren

Posted 3/7/2005 9:10 PM (GMT 0)
Aetna can be a pain. I had a friend with pancreatic cancer who had Aetna several years ago. She was willing to try anything to prolong her life as she had two daughters she wanted to see graduate from college and high school. She had an excellent doctor who was willing to go the extra mile and contact every experiemental treatment and learn about it. Aetna bulked at everything, so they got the media involved. 20/20 came and did a story about her which was never aired, because Aetna suddenly decided she could have what she needed. She was written up in a New York City paper, can't remember now which one, but Aetna was not given good press. The outcome of the story was she lived four years and until the final six months she was doing pretty well as far as quality of life. Pancreatic cancer is usually a few month prognosis because it is so difficult to diagnose. So, Lauren, fight Aetna they will change their mind. How old are you? Sometimes the older we are and I was 58 at diagnosis, the less likely we are to have recurrence or aggressive cancer. My daughter was told she needed chemo because of her age, 39, while I was told I did not. Our pathologies were very similar except her tumor was a little larger than mine. Both of us are doing just fine, she is six years out and I am eight years out. Keep us informed. Please. Hugs MK
Posted 3/7/2005 9:37 PM (GMT 0)
Thanks for the info. I'm going to appeal Aetna's decision as many times as I can.
Lauren
Posted 3/7/2005 11:28 PM (GMT 0)
I agree, keep on them and get them to pay for it.  They are benefitting from the test too.  You could have chosen to just have the chemo and that would have cost them a lot more!  That is what my oncologist told me has worked with some insurance companies.  This test has so much to offer us yet is being treated as though it's shady.  That's too bad.  I can't imagine how many people will have to forgo the test because of insurance red tape.  And if I hadn't had the test I would have pushed for the chemo.  As it is my results were 3 out of a possible 100.  From what I was told they have a scale they use to determine the need for chemo on that scale.  There are three categories but I don't know the scores for them.  The low range doesn't need chemo, mid range is questionable and the high end they recommend chemo.  Now how would the insurance company feel if they knew we were given the option to have chemo, choose it because they wouldn't pay for the test and we wanted to be sure and in the end it wasn't really necessary.  They pay for it in the end with the higher cost of chemo and all the other meds that go along with it.

 

Keep fighting them and let us know how it turns out.  It's stories like this that make me embarassed to have been a part of the insurance industry.

 

Blessings,

 

 

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