Oncotype 24, indecisive on chemo, please help

BarredOwl

Hi Misty879:

You are correct that these tests are technically within the area of expertise of the medical oncologist ("MO").

If your MO does not support requesting these tests in your case, be sure to request an explanation of why he thinks each test is unlikely to provide useful information for decision-making and write it down. You can also ask his opinion about the potential value of other possible multi-parameter tests (e.g, Prosigna (PAM50)) in your situation. With that information in hand, you can consider whether the advice makes sense and/or seek a second opinion.

Please note that the cost of these tests is substantial (in the multiple thousands of dollars). Your MO's office should work with Agendia and your insurer to ensure authorization or a reasonable payment option for your advance approval.

These types of tests provide prognostic information about recurrence risk based on clinical studies comparing outcomes between groups. The outputs are statistical in nature, and cannot predict outcome at the individual patient level. Because of this, while certainty is not possible, hopefully you will have enough information that will help you reach a decision.

From above, one option presented to you was to decline chemotherapy, and receive ovarian suppression plus tamoxifen. Ovarian suppression is usually recommended to higher risk patients who received chemotherapy. This may be a point of additional discussion.

You may find a second opinion from an independent institution valuable to your decision-making process. The second opinion may include a review of all imaging, pathology (actual slides), test results (e.g., Oncotype), and related reports, and will provide an independent recommendation regarding treatment plan, plus an opportunity for further discussion and questions.

BarredOwl

BarredOwl

Regarding ovarian suppression, I have the following bookmarked.

These are documents are not a substitute for current, case-specific, expert professional advice. However, they can help to inform discussions with your medical oncologist ("MO"). It is easy to misunderstand such highly technical documents and whether and how their guidance should be applied in the individual case. Guidelines represent snapshots in time, there may be appropriate exceptions to what is provided for the general case. There may be additional and/or conflicting studies. Therefore, if a publication influences your decision-making in any way, it is essential to confirm your thinking with your MO.

ASCO 2016 Guideline Update: http://ascopubs.org/doi/full/10.1200/JCO.2015.65.9573

(Free PDF version available under PDF tab; See also, Supplement tab)

ASCO 2014 Guideline: http://ascopubs.org/doi/full/10.1200/jco.2013.54.2258

SOFT (Francis):

Main Page: http://www.nejm.org/doi/full/10.1056/nejmoa1412379#t=article

PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1412379

"[R]esults of the planned primary analysis in SOFT comparing adjuvant tamoxifen plus ovarian suppression with tamoxifen alone after a median follow-up of 67 months"

Supplementary Appendix to Francis: http://www.nejm.org/doi/suppl/10.1056/NEJMoa1412379/suppl_file/nejmoa1412379_appendix.pdf

TEXT/SOFT (Pagani):

Main Page: http://www.nejm.org/doi/full/10.1056/nejmoa1404037#t=article

PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1404037

"[P]rimary combined analysis of data from TEXT and SOFT comparing adjuvant exemestane plus ovarian suppression with adjuvant tamoxifen plus ovarian suppression after a median follow-up of 68 months"

Supplementary Appendix to Pagani: http://www.nejm.org/doi/suppl/10.1056/NEJMoa1404037/suppl_file/nejmoa1404037_appendix.pdf

Re Lobular disease (ILC): BIG 1-98:

Filho (2015): http://ascopubs.org/doi/full/10.1200/JCO.2015.60.8133

(Free PDF version under PDF tab; See also, Supplement tab)

ASCO Post Article re BIG 1-98, "Benefit of Adjuvant Letrozole vs Tamoxifen Is Greater in Lobular Than in Ductal Breast Cancer": http://www.ascopost.com/News/31718

BarredOwl

[EDITED 1/1/2017 WITH FUNCTIONAL LINKS]

Sunflower64

Lisey

My MO ordered the Pam 50 for me because my oncotype score was 27.

Do u know anything about that test? I wish she had ordered the Mammaprint but I didn't know about it at the time or I would of asked her to run that one! She recommended the Pam 50 and from what I understand it doesn't just have low or high risk. It has intermediate too! So I could still come back as intermediate! I'm upset about this. I don't think she'll run the mammaprint and idk if my insurance will pay for it. Any advice would be appreciated

Lisey

Hi Sunflower, I'm not familiar with the Pam50, but I do know one woman who took it and came back high risk (after an intermediate oncotype) so she did chemo. I think all of us intermediates should do a secondary test that gives more info about our specific tumors. Also, Since this is your second recurrance, and you are now PR-, Chemo should be looked at imo. Also, you have two stage Bs;;; but that means lymph involvement... confused?

BarredOwl

Hi Sunflower64:

To my knowledge, there is no single correct approach to such testing.

I recommend that you ask your MO to explain why he selected the Prosigna (PAM50) test versus other such tests, and what the advantages may be in his expert opinion. Your medical oncologist may have good reasons for selecting PAM50 in your particular case.

Also, can you please review your profile and clarify if you are:

(a) Stage IA (pT1 N0 M0) or

(b) Stage IB (pT1 N1mi M0)?

T1 = Tumor ≤ 20 mm (2 cm) in greatest dimension

N0 = node negative

N1mi = Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)

I asked this in your other thread:

https://community.breastcancer.org/forum/88/topics/848386?page=1#post_4809377

The nodal status is of significance, and you may receive incorrect information and advice if your profile information contains any errors.

From information at their website, Prosigna (PAM50) has only two risk categories for node-positive (1-3 nodes) (High and Low risk). In contrast, the test has three risk categories for node-negative disease.

Hopefully, the additional information from the PAM50 test will add some clarity and further inform decision-making.

BarredOwl

Misty879

Hi all,


Well I got a second opinion because I can't even get a hold of my MO he will not call me back. So I got a second opinion about the mammaprint test and I have a doctor who will order it for me, but has to talk to my MO first to see how they can get this test sent out. I think this new doctor is annoyed with me for pushing this test to be done. I just want some piece of mind but she said that even if it comes back low risk because my oncotype is 25 she said the test can be inaccurate because there is no research on intermediate oncotype scores yet. She said that there's no research that can say a middle onco score and a low mammaprint score will be accurate as far as benefits of chemo. She gave me these percents: if the score on mammaprint were low then the benefits of doing chemo would be 2-3%, if it's high the benefit goes up to 4-5%. She said either way it's low benefit but it's offered because some people will look at 4-5% and think that's a good enough beneficial percent for them to say yes to 4 rounds of chemo. I am more stressed and frustrated now than I was before I had the surgery!! And I hate feeling like I'm making my doctors angry by asking them all these questions and by insisting they test me with all the tests available to make sure. I know they know more than me and they deal with this everyday but I'm advocating for myself and I don't think that's wrong of me to do.

Ugh so stressed out!!!!!

Leslie13

Hi Misti,

I should have read your post first! Good thing is you have a smaller tumor, and grade 2. I've heardOncotype counts with ILC and that it doesn't. But my score was 15. 25 would make me anxious and search out more data.

Are you in a Cancer Research facility? If not, can you consult with one. Some researchers are interested in ILC in younger patients.

And there's the ER+ PR- status. I remember reading somewhere about PR- and hormone resistance. I don't know for sure, but I'd look at the list of presenters from the recent ILC conference. You're in MA so have access to a ton of quality researchers. Or the best would be to go to Univ of Pittsburg for a consult.

If money is a problem The American Cancer Society helps people access treatment.

Your case is too complicated for anyone but a Lobular Breast Specialist. Too many variables, and not making the best choices has far reaching effects. I figure I have about 10 good years, and live as such. But you're too young for that attitude. Standard chemo with Taxols could leave you with life long neuropathy. Make sure therearen't better choices before going that route.