Ordering Oncotype test for DCIS- Frustrated!

I know waht you mean Shayne.

Knowing what the treatment will be after surgery and rads would have a bearing on whether or not to have rads or not.  I would like to know what kind of hormonals they want to put me on.  what dosage.  I would like a complete picture, not piece by piece as we go through each procedure.

I'm having my onco-dcis test run right now.  Yes, it does take two weeks for the results.  I probably won't hear anything until after Memorial Day weekend.  It is worth the wait for the kind of information it promises though.  My results could mean the difference between more surgery or just radiation. I hate waiting but I'll endure somehow.

Shayne,  

You might want to check the Oncotype Dx website about the test -- from my reading the test can't be ordered until after surgery and the pathology test is completed.

http://www.oncotypedx.com/en-US/Breast/PatientsCaregiversDCIS 

Hope this helps answer some questions.

Shayne, Dear Shayne, may I kindly suggest untwisting your panties and taking a breath?

There's a first for everything (ordering the test for DCIS).  After all, the doctor is working for you, not the other way around. I think you are right on the mark to ask for the Oncotype test; however, a little patience now will be helpful in the long run.  

My understanding of DCIS is "in situ" means the cancer is containted.  Difficult to understand why a path report would state invasive.

"have to go through rads" ~ how about considering rearranging your childcare & radiation schedule until there's more definitive information.   I know childcare arrangements can be difficult to rearrange; however, this is your life you're talking about.  Radiation (or not) is a significant choice, not to be hurried in my opinion.

Perhaps a face-to-face meeting with your oncologist is appropriate before making life-lasting choices.  

I am hoping and praying for your healing and thriving - in the midst of all of the chaos that goes with a breast cancer diagnosis & surgery (which I've experienced twice in 15 years) you will give yourself some time to gather information and consider your options.  Namaste, CMG

Shayne, they roared their terrible roars and gnashed their terrible teeth and rolled their terrible eyes...

I was originally dx with DCIS.  Had a lumpectomy and 2 tumors were discovered (neither showed up on mammo's?)  Path report from that surgery indicated IDC, DCIS and I came back Er/Pr+.  My Med Onc requested the OncoType due to the weird things going on and I gave the doc's more reasons to scratch their heads.  One of the tumors came in Her2- and the other came in, you guessed it, Her2+.  My Onco came in at 51, which is pretty high. 

Keep up with the doc's but really, you almost have to learn to chill; so much of this is hurry up...now wait.  Hurry up...now wait. 

Blessings

Shayne,

A lot of folks get surprised with the final pathology report.  Some things don't show up on the pre surgery tests.  I had  micromet in my nodes and LVI,  both of which were too small to show up on PET/CT or MRI with contrast, or the premliniary path during surgery.  At the time these made me ineligible for for the oncotype test.   That added chemo to the  treatment plan of radiation and hormone therapy.

My surgeon was very good at explaining what the expected treatment plan was, but made sure that I understood that nothing was set in stone until the final path report was in. 

You're right that it feels like a rollercoaster when we're waiting for things to get sorted out for a treatment plan.  It's kind of like an obstacle course where extra  challenges get added along the way. In that spirit, you may want to check that if your insurance covers the oncotype test, and if so what hoops need to be jumped through. 

 A book I found really helpful in dealing with the unexpected twists in life is Pema Choron's When Things Fall Apart: Heart Advice for Difficult Times 

All the best,

Meg 

Shayne - when my left nipple bled spontaneously one day, my PCP immediately got me in to see the breast surgeon. She reassured me that it was probably a papilloma, but just to be on the safe side, she ordered some more diagnostic testing.

Well, I had seven different procedures (diagnostic mammos, ultrasounds, a ductogram, and two ultrasound-guided core needle biopsies.) For the first five or six procedures, the results came back pure DCIS.

However, on the last (I think) core-needle biopsy, there was evidence of a microinvasion of IDC (invasive ductal cancer).

I was offered a lumpectomy with radiation, but since I had multi-focal cancer (in two different places) the surgeon said I might not be happy with the results, and recommended a UMX.

I had three months to consider my options, because my surgery got rescheduled twice.

I made the decision to have a BMX with immediate reconstruction, and had my surgery on December 5th.

Like most all other women who go through surgery, I was waiting for the other shoe to drop. We get as much information as we can through biopsies and procedures, but ultimately, it's the final pathology report that gives the Oncologist the information he or she needs to determine any treatment for us. They have to have all the facts first. I didn't see my Oncologist until December 30th.

I was fortunate. My margins were all clear, and there was no node involvement. The BMX was my treatment, except for 5 years of Arimidex which I will start in the fall. I never had the Oncotype test, nor did I have the BRCA test. My MO didn't think I needed either one.

I do understand how frustrating all of this is for you. I am wishing you the best!!!

Shayne,

I asked my BS about oncotype testing. He did not think it would be worthwhile for me based on my youthfulness and high grade of DCIS.... my risk of recurrence is high enough to automatically warrant rads. He said if I was grade 1, or older, then oncotype testing could help with the decision making process. FWIW. 

Hope you're feeling at peace as your surgery day approaches. Take care!