Oncotype below 15, but cancer returned

Posted by Rom828 @jgallagher04921, Aug 3 6:09am

Anyone told they had a low risk of cancer returning, but it did return? If so, how much time passed between diagnosis?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@rom828 did you do tamoxifen or an aromatase inhibitor?

REPLY

@rom828 i am so sorry to hear that your cancer returned. I did not have an oncotype score as that didn’t really even exist when I was first diagnosed. That being said, you are not the first, I have heard of this happening. The reality of this, is that this test just gives guidelines for treatment, it is not an absolute answer. Truthfully if they could devise a test that give us an absolute about these things. I suspect we would know enough to defeat this type of cancer completely, and we could all go home so to speak.
I will be thinking of you today and hoping to hear back from you.
Tell me about your cancer, is a local recurrence, is it the same type? What is the plan?

REPLY

My oncotype score was 16. I had endometrial cancer 10/20/ 22. Had hysterectomy. 7/20/23 Year later had breast cancer. Lumpectomy. No radiation, no hormone blocker meds. Lymph nodes clear margins clear. Just had breast mri 7/29/24. No cancer. I am going to continue checking my self with ultrasound and mri. 92% chance my breast cancer will not come back. My endometrial cancer only has a 2% chance of coming back in vagina(had hystertomy). Oct 2024 will be two years since had endometrial cancer. 2% chance of coming back after 2 years
Up til Oct 2024 was a 4% chance. I am 75 years old in good shape. Elyptical every day and 3lb weights for arms. Meditation and stretching back. Just going to keep going forward and positive. If my cancer comes back I will deal with it. That is all you can do. Right?

REPLY
@auntieoakley

@rom828 i am so sorry to hear that your cancer returned. I did not have an oncotype score as that didn’t really even exist when I was first diagnosed. That being said, you are not the first, I have heard of this happening. The reality of this, is that this test just gives guidelines for treatment, it is not an absolute answer. Truthfully if they could devise a test that give us an absolute about these things. I suspect we would know enough to defeat this type of cancer completely, and we could all go home so to speak.
I will be thinking of you today and hoping to hear back from you.
Tell me about your cancer, is a local recurrence, is it the same type? What is the plan?

Jump to this post

I am so sorry for the misunderstanding...my cancer has not returned. I was just asking if this has happened to anyone. I still fear recurrence, so was just curious. Sorry again for the misunderstanding!!

REPLY
@jgallagher04921

I am so sorry for the misunderstanding...my cancer has not returned. I was just asking if this has happened to anyone. I still fear recurrence, so was just curious. Sorry again for the misunderstanding!!

Jump to this post

@rom828 not sure when you had your diagnosis but I took letrozole for 5 years and an now almost 10 years out. Cancer is on the back burner of my mind but it is always there. It is kind of like my tinnitus: in the background but I have learned not to hear it most of the time. IF your diagnosis is recent, just know that the anxiety can get better!

REPLY
@windyshores

@rom828 not sure when you had your diagnosis but I took letrozole for 5 years and an now almost 10 years out. Cancer is on the back burner of my mind but it is always there. It is kind of like my tinnitus: in the background but I have learned not to hear it most of the time. IF your diagnosis is recent, just know that the anxiety can get better!

Jump to this post

What was your original diagnosis, if you don't mind?

REPLY

Grade 3 DCIS and invasive mixed ductal and lobular , with lymphovascular invasion, high ki67% , ER 95%, PR 80%, HER 2 ultimately negative but barely (biopsy was HER2+, had a couple of equivocals, retested with FISH.

But my Oncotype was 8.

AFter 5 years I did the Breast Cancer Index that showed high risk (5.7%, they have since changed the labeling of risk) but no benefit from doing letrozole or any AI past the 5 years.

REPLY
@windyshores

@rom828 not sure when you had your diagnosis but I took letrozole for 5 years and an now almost 10 years out. Cancer is on the back burner of my mind but it is always there. It is kind of like my tinnitus: in the background but I have learned not to hear it most of the time. IF your diagnosis is recent, just know that the anxiety can get better!

Jump to this post

My diagnosis was last year ( Feb 2023). I am 45, on Exemestane.

REPLY
@sirene

What was your original diagnosis, if you don't mind?

Jump to this post

Invasive Lobular. PR/ER+, HER2-. No cancer in Lympth nodes.

REPLY
Please sign in or register to post a reply.