Oncotype DCIS testing

T_C

Hi all,

I posted for the first time on here a couple years ago when they found a benign nodule. However, I was diagnosed with intermediate to high grade DCIS earlier this year and had a lumpectomy. My surgery was a breeze and the surgeon did a wonderful job maintaining symmetry.

I requested my surgeon do the Oncotype DCIS to help inform my decision for radiation, as I have another medical condition that may make radiation pose more health risks for me. She initially refused, but after some discussion, the practice did order it.

My Oncotype DCIS result came back as a 58 with 18% recurrence probability in the next 10 years (I am 42, dx at 41).

I was not told by the surgeon's office that insurance may not cover the Oncotype DCIS and my insurance, which is an excellent plan, denied this test, sticking me with a bill for $4,600.

I am doing radiation now because the Oncotype score was in the high range. We of course are fighting the bill and my insurance said the lab charged a lot more than they are supposed to for this service. It has been exhausting and I am filing appeals, going through radiation, trying to keep my full time job, and manage my home/kids.

I just wanted to inform everyone about this problem. I am thankful I have excellent health insurance; they have covered more than I thought they would, even second and third opinions and other "just in case tests". I was stunned when this was denied, espeiclaly since it did inform my radiaiton decision.

T.C.

Chloe-Forward8

Dear TC,

I am praying for you and I also had OncoType Testing. My score was low and it helped me make the decision to not have radiation because my margin was so low and I was Stage 0 with a 4mm leison.

Even with all the information I worried was I making the right decision to not have radiation but the OncoType Test confirmed with my Oncology Radiologist and Oncologist that we would skip radiation. I am like you I have health risks regarding radiation.

I am hoping for everyone reading this knows about OncoType and will help will fight to get the test. I am like TC, I did pay for my Oncotype Test and I paid for my genetic Testing. I slowed down the process after diagnosis because I wanted to make the right decision. It was hard not taking action but I researched and I learned so much.

I highly recommend the book "Breasts the Owners Manual" by Dr. Kristi Funk, she is the doctor that helped Sheryl Crow.

I have changed my diet and I am exercising more and my recent blood test revealed Hypothyroid which was messing up my estrogen (I am ER+ DCIS) I wish I would have had that blood test years ago and possibly prevented my Estrogen issues.

TC, lets stay in touch I want to hear how you are doing.

Chloe

Puzzlewoman

I just want to add that I had a very similar experience. I wanted that test to know my occurrence risk. Low, I would not have agreed to radiation. Intermediate, I would have asked for a second opinion. But mine was high. I met with a genetic counselor today and she said the problem is this test is not standard practice (standard: just do radiation). I had peace of mind from it. The labs are trying to push this test into standard practice. But no way should the individual have to pay $4,600 for it! Good grief, that's more than I paid for my lumpectomy

mwaucker

T_C -
My BS told me my insurance would likely not cover oncotype DCIS testing (they did cover my genetic testing) but that the company (oncotypeIQ) would cover it if my insurance didn’t pay because they are trying to “get the test out there” as the DCIS test is apparently relatively new. That may be worth looking into if you haven’t done so already. I was hoping to get the oncotype testing done but there wasn’t enough DCIS recovered during my lumpectomy to test (<1mm). I am considering requesting my MO check with the hospital that did my biopsy to see if there is enough of a sample to test... I’m already in the middle of rads so it isn’t going to impact that decision but I am supposed to start Tamoxifen (I was 99% ER+ & PR+) after rads and I am NOT excited about it. I - like you - am young (40), have a full time job and an small child...the thought of being in a chemically-induced, pseudo-menopause for the next 5 years is not awesome. My MO wants me to try the tamoxifen for 2 months and see how I do, if I can tolerate it great, if not I go off of it. I know the oncotype isn’t designed to help make HT decisions but I’d like to know my risk of recurrence for my own sanity regardless...especially if I decide to decline the tamoxifen. I hope you were able to get your insurance company to pay for the testing.

Col321

Is dcis oncotype testing only recommended in the case of lumpectomy (rather than mastectomy) as a decision-making tool for radiation? I had mastectomy and i don't think my final testing included oncotype info.

Mommyathome

I did not have onco done. BS said I didn’t need to . I had mastectomy. She also said going on tamoxifen had more cons than pros.

After having a mastectomy did you go on tamoxifen?

Col321

thanks for replying, mommyathome. My breast surgeon also didn't rec tamoxifen for me. I was wondering if having oncotype testing would have possibly changed that recommendation. I wasn't eager to go on tamoxifen bec of the side effects, but I also don't want to regret not going on it.

T_C

mwaucker: thank you for sharing information about possible coverage. I am waiting on the appeal from insurance now. Oncotype needs to be honest with us about insurance not covering it in all cases, that is unfair to advertise and promote how it helps make decisions, but then to face a hefty bill on top of everything else is a significant burden to carry. It was vital in my decision making process.

I did radiation, but cannot take Tamoxifen due to my other medical issue. The MO said since it does not affect mortality rates at all, it is not worth the risk it may pose.

I do wish I had known this before I chose the lumpectomy. May have chosen the MX. Not sure now, but the thought of getting frequent mammos, MRIs, biopsies, etc is not appealing.