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Topic: Oncotype DX role in Bilateral Primary Treatment Decisions

Forum: Mixed Type Breast Cancer — Meet others who have mixed type breast cancer.

Posted on: Feb 22, 2016 10:14AM - edited Feb 22, 2016 07:07PM by Feathers68

Feathers68 wrote:

I am a 47 year old mom of three. I was diagnosed Dec 1 with IDC of my right breast. Initial path. looked very promising decided on bilateral mastectomy. Underwent MRI to determine candidacy for nipple sparing mastectomy. Results of that recommended biopsy of left breast as well. Fast forward to surgery day- 1-4-2016. Was found to have bilateral primary tumors- one in each breast- L stage 1, Right Stage 2. Neither surgeon, nor oncologist were rattled by this at all. Both said prognosis and treatment options were similar to that of a patient with unilateral disease.

In determining adjuvant treatment options, onc recommended Oncotype DX testing of both tumors. Said was recommended to test both tumors as histology can differ. My left tumor was found to have an RS of 9 (low risk) and right tumor had an RS of 18 (bottom edge of intermediate). After test, my insurance company denied coverage and called oncotype testing in my case “experimental" and “investigational".

Did anyone else have a similar experience? What was recommended to you and what did you ultimately decide for treatment?

Hormonal Therapy 2/19/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/1/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/4/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 22, 2016 11:17AM - edited Feb 22, 2016 10:08PM by Paxton29

What did your insurer deny?

I had bilateral cancer; what was thought to be DCIS in my rightt to be IDC at surgery. I was 45 at diagnosis. Left side tumor was 2.5 cm, right side 9 mm. Because the left side tumor had a ki67 of 25, and my age and bilateral tumors, I skipped Oncotype testing. I'm currently halfway through four rounds of taxotere/cyotoxan. I will also need radiation because even though I had a BMX, I didn't have a clean margin on the right. I didn't have much tissue to start with.

We're all different. Maybe I didn't "need" chemo; my MO said if I were 20 years older, she wouldn't recommend it, but at 46 it made a difference to her. And to me

Stage IIA left, Stage I right, Dx 11/20/15; BMX, TC chemo, rads--DONE. ER/PR+, HER-. Tamoxifen to resume after exchange surgery soon!
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Feb 22, 2016 12:21PM - edited Feb 22, 2016 12:27PM by SummerAngel

Did your insurance deny both Oncotype payments or just one? I had bilateral tumors, too, and my MO told me he would only test the right-side tumor if I insisted upon it. I'm not sure how many bilateral patients he's seen, but he seemed to think that testing only the larger tumor was the way to go. Maybe insurance has something to do with that...

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 3/27/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/28/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/4/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Feb 22, 2016 02:12PM ChiSandy wrote:

Appeal the denial--get an attorney who specializes in that. OncotypeDX is now standard-of-care, not “experimental,” in the USA. (Assuming that’s your location).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Feb 22, 2016 06:54PM - edited Feb 22, 2016 07:14PM by Feathers68

Thanks for the quick responses everyone!

Right now both tests are denied. They are disputing the use of the findings in a case of synchronous bilateral primary IDC. Each of my tumors qualifies independently for the testing but apparently you can't have bilateral primaries in the all knowing book of insurance. I looked online and found studies which proved that bilateral primary cancers should be tested independently of each other as they can (and mine did) end up with vastly different recurrence scores. My oncologist based an “offer but not push" recommendation for chemo based on the higher of the two scores which was marginal/intermediate risk of 18.

Right now I am starting a 10 year course of tamoxifen which may be altered after a few years to add AIs. I have a two week window to change my mind about going through a course of chemo--

It is so good to hear there are others out there with bilateral BC. Please keep the posts coming as I would love to hear everyone’s treatment decisions.


Hormonal Therapy 2/19/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/1/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/4/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 22, 2016 07:32PM ChiSandy wrote:

Use that two-week window to find an insurance attorney. I’m not kidding. At this point, evidence-gathering is your best friend. Keep a journal to document every symptom and side effect--you may need to refer to it down the line.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Feb 22, 2016 07:46PM BarredOwl wrote:

Hi ChiSandy:

May I ask why you recommend documenting symptoms and side effects, if Feathers68 has received the Onctoype test on both tumors (Oncotype Recurrence Score (RS) = 9 (left) and Oncotype Recurrence Score (RS) = 18 (right))?

Hi Feathers68:

Have you checked in with GenomicHealth (provider of the test) regarding insurance coverage in cases of bilateral disease, and what they may know about it? They appear to have some patient assistance programs as well, and you could ask about those.

http://breast-cancer.oncotypedx.com/en-US/Patient-...

BarredOwl

Age 52 at diagnosis - Synchronous bilateral breast cancer - Stage IA IDC - BRCA negative;

Bilateral mastectomy and SNB, without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Feb 22, 2016 08:04PM Gully wrote:

Hi Feathers,

I am also a SBBC patient. I had two oncotypes done. Left came back at 19 and right 5. My insurance did not question the need for two tests at all. I would agree that you need to fight the insurance on this one. The new ASCO standards do include the tests. My MO suggested 4 rounds of TC more so based on "young" age than anything else. My stats are below. I should also say I had a second opinion at Dana Farber who said it was up to me to choose, that I could have just started hormone therapy or do the TC and then do the hormone therapy. It is really kind of crazy how close our numbers are! Good luck in your decisions, this is the worst part, it does get better. Hugs....

Gully


Dx 1/18/2013, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/6/2013 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 3/8/2013, IDC, Right, <1cm, Stage IA, Grade 1, 0/0 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 5/2/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 8/6/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/29/2013 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/21/2017 Arimidex (anastrozole)
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Feb 22, 2016 10:07PM Paxton29 wrote:

I don't understand why they denied both. It seems like they would have at least paid for the first one even going by their reasoning. Could you perhaps post a quote from the denial letter that gives more context for their reasoning?

Stage IIA left, Stage I right, Dx 11/20/15; BMX, TC chemo, rads--DONE. ER/PR+, HER-. Tamoxifen to resume after exchange surgery soon!
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Feb 22, 2016 10:18PM ChiSandy wrote:

I suggested documenting symptoms essentially to prove that there was a need for the test (later on, should an appeal be filed, the attorney might need documentation of her personal experiences with the disease to show that they are substantially similar to those of the vast majority of patients with bilateral IDC whose insurers accepted Oncotype DX as std-of-care) . I should have omitted “and side effects,” since her decision regarding chemo would not depend on coverage for Oncotyping.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Feb 22, 2016 10:34PM BarredOwl wrote:

Hi ChiSandy:

Thanks for the additional explanation regarding documentation

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Feb 22, 2016 11:34PM - edited Feb 22, 2016 11:36PM by BarredOwl

This company is denying coverage for both tests, which Feathers explained as, "They are disputing the use of the findings in a case of synchronous bilateral primary IDC."

This is pure speculation, but the basis for the denial may relate to the scope of validation of the test in bilateral breast cancer (how many bilateral patients were included in the validation studies), and/or certain publications that might suggest that the prognosis of bilateral disease may differ from unilateral disease, such that in their insurance-toad view, the test might not be of prognostic and/or predictive value in the bilateral setting.

SummerAngel posted about the cloudy area of the prognosis of bilateral disease and the weaknesses and limitations of such studies in this thread:

https://community.breastcancer.org/forum/109/topic...

The fact that other insurers do cover the test in bilateral patients suggests the reasoning of this insurance company is cr@p.

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Feb 22, 2016 11:42PM ChiSandy wrote:

BarredOwl, I’d have used a far less polite epithet.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Feb 22, 2016 11:47PM Paxton29 wrote:

It would be helpful to me to see their specific language. Obviously I think they should cover the testing--who is this, anyway?--but knowing exactly what they're claiming is crucial to appealing.

Stage IIA left, Stage I right, Dx 11/20/15; BMX, TC chemo, rads--DONE. ER/PR+, HER-. Tamoxifen to resume after exchange surgery soon!
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Feb 23, 2016 07:33PM Feathers68 wrote:

Hello everyone!

Good news- after spending 45 minutes on hold with Genomic, my MOs office was able to get both tests covered by genomic if the insurance company does not step up. WHEW! Two kids in college doesn’t jive with an extra 8K bill popping up!

Just to clarify- the company called the application of the Oncotype DX in bilateral cases experimental. They did not dispute the validity of the scores at all. However, in any studies done on Synchronous Bilateral Primary BC, the protocol is always to treat as if it is a single tumor. This is especially true when patients present as node negative. My MO echoed what my BS said; if it were metastatic, there would be positive lymph nodes or margins that were not clear. It just seems that my body decided to grow a whole colony at once.

I like finding others with SBBC- it is an unusual diagnosis. When I tell people, they automatically assume I have Metastatic disease and I have to go through the whole explanation.

Hormonal Therapy 2/19/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/1/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/4/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 23, 2016 07:42PM Feathers68 wrote:

Gully-

Crazy how close we are- I agree! Looks like you chose a BMX as well. Hope things continue to go well for you too. I also like how you noted your diagnoses when they were virtually at the same time! It was not clear how to do this- going to change it now.


Hormonal Therapy 2/19/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/1/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/4/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 23, 2016 09:58PM L2girl wrote:

that's good news, feathers

Just wanted to chime in that I also had both tumors tested and I didn't have any trouble with insurance

Synchronous bilateral breast cancer. Age 47 @ dx. Dx 6/20/2013, IDC, Left, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Dx 7/24/2013, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Radiation Therapy 9/15/2013 Breast Hormonal Therapy 1/7/2014
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Feb 24, 2016 12:20AM Meow13 wrote:

I only had one tumor tested and I don't know if it was IDC or my ILC tumor. I am going to ask my oncodx which one. He doesn't seem interested in my tumors since I am 4 years out but my oncodx was 34. I didn't do the recommended chemo, and I just stopped the AI treatment.

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