OncotypeDX score 64

Charlie0357

Way too many topics to weed through. I have already gone through chemo and radiation. Now i am on anastrozole for 10 years. Is there anyone else out there with this high of a score. Just started on this drug 5 days ago. My head is screaming not to take this drug due to all the side effects. Anyone out there that can give me their experience in this situation. I just feel so over medicated for a stage 1 cancer.

muska

Hi Charlie,

Do you have DCIS that is stage 0 or IDC? Your profile says DCIS but in the post, you indicated you are stage 1.

Speaking of anastrozole side effects everyone is different. Many women do not get side effects or get very mild ones. Women who don't have many side effects do not usually post here.

I have been on anastrozole for almost 3 years with very minor side effects. I know I am high risk so I will stay on it as long as I can (was told 10 years.)

Good luck to you!

BarredOwl

Hi Charlie0357:

Welcome. You may not realize it, but you have posted in the DCIS Forum for those with non-invasive disease (Stage 0 DCIS), who (without any invasive component) would not receive chemotherapy. There is a different Oncotype test (DCIS test) used for a different purpose (inform decisions about radiation) and with different Recurrence Score ranges for patients with pure DCIS. Anyway, I will assume from your reference to receiving chemotherapy and Stage I disease, that you received the Oncotype test for invasive disease.

There is a thread here for "Long term "high oncotype test" survivors" (with invasive disease) where a number of people with scores in the 50's and 60's have posted:

https://community.breastcancer.org/forum/85/topics/719253?page=1#post_1024034

Muska makes a good point about many finding that they tolerate endocrine therapy, and there are several AI's available in case of issues.

Last, but not least, it is important to remember that the recurrence risk information in the test report (for invasive disease) is from studies in patients who all received endocrine therapy. I have posted on that before and copy it here:

For information only and (as always) subject to confirmation with one's Medical Oncologist, the average Recurrence Risks shown in the node-negative (N0) and node-positive (1-3 N+) test reports and associated with particular "Recurrence Scores" are based on studies in groups of patients who all received tamoxifen (or tamoxifen plus chemotherapy). Thus, if a patient declines endocrine therapy, their risk of recurrence would be much higher than shown in their Oncotype test report.

The test reports do not include an estimate of recurrence risk without any endocrine therapy. However, one's Medical Oncologist can provide such an estimate (e.g., an extrapolation based on the potential risk reduction benefit of tamoxifen or an aromatase inhibitor).

With that additional information in hand from their Medical Oncologist, some patients may still choose to decline endocrine therapy, after considering their personal risk / benefit profile in light of their personal risk tolerance. But it would be important to understand that the recurrence risk information provided by the OncotypeDX test for invasive disease "assumes" 5-years of endocrine therapy.

In five years, there may be more information and tests available to help you assess the risk / benefit of continuing for an additional 5 years. I hope you find you tolerate the anastrozole very well.

BarredOwl

Meow13

Interesting my mo says only 5 years on anastrozole.