Topic: Anyone with DCIS had the Oncotype test?

Jun 3, 2012 09:04 AM Neeners815 wrote:

Infobabe - I'm sort of wondering if your doctor isn't familiar with the Oncotype test for DCIS patients in determining if they should have rads or not.  It's pretty new, and even at my breast center they had only heard about it a few days before my post-op surgery, so I was the guinea pig on the test (and dang it, I failed!).

Jun 10, 2012 06:41 PM Infobabe wrote:

Can you answer this question?  I have found among my saved documents that the DCIS must be 2.5cm.  Mine is 1.0cm.  Does that mean I am disqualified?

Jun 10, 2012 07:33 PM, edited Jun 10, 2012 07:38 PM by Infobabe

Jun 10, 2012 07:41 PM Infobabe wrote:

Tomoxifen if often given to post menopausal.  My DCIS is about 100% ER/PR+.  Thank god I don't have to take those other poisons with the dreadful side effects.

Jun 10, 2012 07:45 PM Infobabe wrote:

Yes, the HER must be negative.  ER/PR+

Jun 10, 2012 07:52 PM Infobabe wrote:

I think I may have answerd some of these post twice.  Please forgive me.  This oncotype thing is making me crazy.

Jun 10, 2012 08:32 PM JamieB86 wrote:

julz4 - if you had a micro invasion, I don't think the Oncotype for DCIS will be for you, but not 100 % sure on that.  Let us know what the good doctors tell you.

Jun 10, 2012 08:51 PM JamieB86 wrote:

There is one for invasive cancers that helps to determine chemo treatments I believe.  The test for DCIS is different.

Jun 10, 2012 09:11 PM, edited Jun 10, 2012 09:12 PM by Infobabe

 julz4

That's what I would need too.  The HER + or- test.  They do not do that routienly fpr DCIS.  There is a whole lot of things they do not do. 

Jun 11, 2012 12:06 AM aanyclk wrote:

Yes. I had the Oncotype DX test in April to determine my recurrence score (which in turn would signal to me and my onco whether I was a good candidate for chemo prior to rads). I thankfully ended up with a low onco score and was able to forego chemo and start with radiation. Mine was 100% covered by my insurance, so I would suggest calling the Onctotype folks directly; it's a lab in California and they have a great group of customer service people who can maybe check, and check with your insurance company too. Good luck to you.

Jun 11, 2012 07:27 AM redsox wrote:

Infobabe wrote:

Note however that the test is for patients who have low or intermediate grade DCIS that is ≤2.5 cm in size, or high-grade DCIS that is ≤1 cm.

Those were criteria for the underlying study used for the analysis of Oncotype DCIS Score reported in December.  If you don't meet them it is reasonable to question whether the test applies to you.  Infobabe seems to meet the criteria.

There can be other factors that put a particular patient at high risk but without those, it seems like a good idea to have the test.

Jun 11, 2012 12:04 PM Infobabe wrote:

Well, I got a call from the U of Michigan and they do not do Oncotype for DCIS.  So I am off to the RO and try to convence him.  Since U of M doesn't do it, I doubt he will differ.  

From everything I read, I should not be having rads. 

Jun 11, 2012 04:13 PM Infobabe wrote:

JamieB86

I will never be comfortable, but the truth of the matter is that I am about 5 years ahead of the curve.  He said I could wait.  He is a joker.  That is part of the problem as he has quite a personality and it is hard to argue with him.

My RO said he would order the DCIS but he wouldn't base any medical decisions on it.  I would have to pay the $4,000. 

There is also another gene test that he knew all about and read the extract.  I guess larger double blind studies on these two are proceding.  He also knew about the second gene test and the radiology community is excited about it.  Again, tests done on only a few women.  Double blind is always tough because some are getting denied any treatment at all.

Soooooo, i start rads June 18 and it goes on for 5 weeks.  Probably 5 weeks and a day since July 4 will be in the mix. 

Thanks for this support. 

Jun 11, 2012 06:26 PM Infobabe wrote:

JamieB86 

When I hear back from Oncotype, I will ask them about that.   I wonder if I would be obigated to follow up and do what the Oncotype score sugests.  If I do not, there is no point in it.

Did you hear today that an NBC moring show woman has a pre-leukemia condition caused by rads for breast radiation?   She is getting a marrow transplant from her sister.  I think her name is Robin Roberts.

Guess that is my problem:  I want to skip rads but am afraid to do so without the blessings of the medical community. 

Jun 11, 2012 07:16 PM Infobabe wrote:

That's what I just found out.