Recurrence while on Tamoxifen

Barbara

Unfortunately recurrences while on Tamoxifen do happen. My most recent diagnosis, while considered to be a new BC, occurred while on Tamoxifen. Tamoxifen reduces the chances of recurrence, but it can happen.

If you are uncomfortable with your oncologist’s treatment recommendations please get a second opinion.

Tracy

Unfortunately it can happen. I’m stage 4 now, on Ibrance. My MO told me I could have reoccurrence on THAT! So far, after a year on it, I’m NED, but it still can come back.

Best wishes.

"I cannot understand how the radiologist did not see the tumor on the MRI done before the second surgery."

Barbara, unfortunately a tumor as small as 4mm tumor often cannot be detected on imaging, even on an MRI. The diagnostic tools available to us today are far from perfect, and they usually cannot detect very small tumors.

As for having a recurrence while on Tamoxifen, unfortunately, as others have commented, it can happen. Tamoxifen reduces risk, it does not eliminate risk.

The issue with the Oncotype test is that it was not verified on patients with tumors smaller than 5mm - precisely because there aren't many patients with tumors this small, unless the tumor was an incidental finding along with a larger amount of DCIS - just as happened in your case. But let's say you had the Oncotype test done and came up with a score of 10. Below is a sample report I found on the Genomic Health site. It's for node positive; with micromets I think your Oncotype score would be assessed against the node positve scale, not the node negative scale, but I'm not sure because the NCCN Guidelines indicate that the Oncotype node positive results are not proven for those with micromets. And your micromet is only 0.1mm larger than ITC (which is node negative), so it's the smallest possible definition of being node positive. Confusing for sure.

For the average node positive patient with an Oncotype 10 score, the 9 year distant recurrence risk is 12%. But the "average" tumor size for a node positive patient was ~2cm, five times the size of your tumor. And the "average" node positive patient certainly had more nodal involvement than micromets. So with a 10 score but a pathology so different than the average (and with no one like you - with a tumor this small and with micromets only - in the study at all), is your risk also 12%? Or is it considerably less?

And if your Onctoype score was higher and for the "average" patient indicated a benefit from chemo, would that assessment apply to you too, with such a different diagnosis than anyone in the study? Almost certainly your risk would be significantly different.

I understand the frustration of not getting an Oncotype score, but I also understand why your MO didn't send for one. Given how different your pathology is versus the average in the Oncotype research, an Oncotype result might mislead rather than assist. So your MO has gone back to what MOs do for any tumor that doesn't meet the Oncotype criteria, and what they have done forever (since before the Oncotype test, which came into common use well after my diagnosis in 2005), which is to make a recommendation based on your pathology, established treatment guidelines, and experience.

I recurred the first time on Tamoxifen. Unfortunately recurrences can happen on any therapy, because cancers can learn to outsmart the treatments over time.

My advice would be to ask your MO or surgeon if there are ANY additional tests you can do on the tumor specimen to have a better idea of how aggressive it actually is. If Oncotype is not an option, maybe try something else? That is very important information to have for early stage people, because aggressive cancers behave very differently from more chilled out cancers.

My cancer was "caught early" but was so aggressive that it's been a huge problem despite active treatment. In your case the lymphovascular invasion and micromets are a bit of a red flag, and I would want more information for you. Best wishes.