Diagnosed 11/26/14, Invasive Ductal Stage 2b, Avoided Chemo!

Allygator

Hi,

I'm newly diagnosed with Stage 2b. The usual sequence of treatment for my Stage if you choose lumpectomy is chemo, radiation and then an aromatase inhibitor. Luckily, I'm at Fox Chase Cancer Center in Philadelphia where I learned about the Oncotype DX genetic test (it was being offered in a clinical trial). This is a genomic test that analyzes the activity of a group of genes that can predict how a cancer is likely to behave and respond to treatment. (Since this test is investigational for my stage of cancer, the cost was not reimbursed by my insurance.) The results can help you and your physician determine the best path forward. In my case, the results showed that I would not benefit from the addition of chemo. I start radiation at the beginning of February.

I have no reason to share this information other than to save patients in my situation from unnecessary treatment with chemotherapy.

Moderators

Welcome to the BCO community Allygator. Thanks for sharing your story. We hope that you will continue to post and share your treatment experiences. We wish you the best with your Radiation coming up next month. If you are interested in more information you might be interested in reading about Oncotype Dx test on our website. Many here are taking advantage of this test to gain as much information as possible to aid in treatment decisions.We hope to continue to hear from you. The Mods

Hopeful82014

I'm surprised that you have been told it's investigational for stage IIb, Allygator. This doesn't jibe with anything I've been told. You might want to look into that a bit more.

Allygator

It is "investigational " for those who have node involvement (Stage2B); not for those without. I've spoken with and have a hard copy of the "directive" from BCBS. It is considered "investigative". Although, those within the scientific community know that genes are genes; insurance is waiting for the results of studies.

I wish more folks would have a good place to find about this test. Even though it is relatively expensive, (in my case around $1250) the chance that one might not have to go through chemo is worth ANY expense, IMHO.

mathrules

I am so happy for you! My grandma avoided chemo because of this as well. Great share!

Hopeful82014

Allygator, BCBS may be treating it as investigational for node positive disease but I don't think that's universal. I am node positive and, while I've not done the Oncotype yet, my MO has included it in the plan from the beginning.

Now, I realize that MOs aren't involved with the insurance billing but if they were having to spend time writing letters to insurers to plead for coverage, they would be aware of the issues. I'm not arguing with you about your experience but I do think BCBS may be short-changing you, possibly.

I'll check with my MO and BS about my situation, of course.

I fully agree with you that even paying out of pocket for this would be worthwhile, if that's the only choice. I, personally, would probably sell my first born in order to avoid chemo!

I think standard of care anymore is to order the Oncotype. MOs who do not do so are seen as dinosaurs.

coraleliz

To add confusion to the insurance coverage....Genomic Health(the oncotype people) contacted my insurance BCBS FEP prior to running my oncotype test. They contacted me & told me it would not be covered but I would incur no charges because they were contracted with BCBS FEP. They also sent me a letter stating this. A couple weeks later I got an EOB & my plan payed for it! Huh! Not complaining just don't understand. Another stage II chemo dodger here.

Hopeful82014

Hi, Kay - you nailed it with that last sentence.

Hopeful82014

Coraleliz - that is a perfect insurance story! Glad it was covered, one way another and that you were able to dodge chemo. Do you mind if I ask what your score was?

coraleliz

Hopeful- my score was 4

aussieched

Hi Coraleiz, thank you for your post. I was diagnosed in 2007, and had 1 positive node. Back then the oncotype test was not available to us in Australia, so I did not have the test.

Also I did not have chemo and it has always really worried me that I didn't end up doing the chemo, particularly with the positive node. My doctors thought having my ovaries out was a good alternative, and at the time I took that option, but have worried ever since.

The oncotype is now available here, but costs $5,000 as the test has to be sent to USA.

As time has gone on, it appears more women with positive nodes are not being given chemo now.

My IDC was a luminal A with 80% er and 80% pr. If I am not being too nosey, would I be able to ask what your %'s were.

thanks Ched