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?

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@windyshores

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.

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5.7% was considered high risk? Did you do chemo or just the AI? I like hearing that you are doing well, 10 years out. I am a year and a half out, only take Letrozole. Stage 1A IDC, ER/PR+ Her2- with Fish.

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@jgallagher04921

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

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Mine was IDC, ER/PR+ Her2- clear nodes as well. I am a year and a half out, on Letrozole only.

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@sirene

5.7% was considered high risk? Did you do chemo or just the AI? I like hearing that you are doing well, 10 years out. I am a year and a half out, only take Letrozole. Stage 1A IDC, ER/PR+ Her2- with Fish.

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@sirene as I said, Breast Cancer Index has since changed their labelling of risk, because patients were not happy. Their cut off at the time was in the 4's. 5.7% was basically the same as my Oncotype risk of 6%.

I absolutely did not do chemo with such a low Oncotype. The Oncotype tells us whether it will benefit us and for me, that was a no.

One oncologist gave me the choice on chemo. The other two relied on a tumour board that had an absolute no.

I don't think about cancer too much at this point though I know I won't be surprised if it spreads eventually. People are living for years with metastasis and I would hope to be one of them.

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My Oncotype was 22 - considered a gray area in between. I did not do chemo, but had lumpectomy & then radiation for Grade 1B IDC. Just finished my 6 years - got off the AI at 5 years. I rarely think of it returning. But I'm still watchful when it comes to my health. Best wishes for you!

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@jgallagher04921

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

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I had ILC, PR/ER+, HER2- as well. I am about 16 months out. Age 53. I had a bilateral mastectomy and take Anastrozole. My Oncotype was a 10. I do worry about recurrence, but hope that with diet, exercise, and taking the AI, I will beat this. Best of luck.

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My Oncotype dx was only 8. I was Stage 1. It has been 4 years since my mastectomy. Last week I was diagnosed with invasive ductile carcinoma, grade 3 this time, in my remaining breast. I am undergoing a breast MRI in two days. I am in shock.

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@colely

My Oncotype dx was only 8. I was Stage 1. It has been 4 years since my mastectomy. Last week I was diagnosed with invasive ductile carcinoma, grade 3 this time, in my remaining breast. I am undergoing a breast MRI in two days. I am in shock.

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I am so very sorry!! I can understand your shock! Were you on Tamoxifen or AI? How did this on get found?

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The title of this thread is a little misleading, even scary. It is important to note that the person who started the thread is concerned about recurrence, and hasn't experienced it. Anyone who had an Oncotype test had a hormone-positive, Her 2 negative cancer, and tamoxifen or aromatase inhibitors work pretty well.

I get confused by discussions of cancer returning. There are new cancers in the other breast, recurrences on the same site as the original cancer, and metastasis to other places in the body. The term "recurrence" seems to be used for all these situations but they are so different!

Sorry for anyone experiencing any "return" of cancer. I don't like the term "survivor" because we never know we have eliminated cancer for good.

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@colely

My Oncotype dx was only 8. I was Stage 1. It has been 4 years since my mastectomy. Last week I was diagnosed with invasive ductile carcinoma, grade 3 this time, in my remaining breast. I am undergoing a breast MRI in two days. I am in shock.

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I'll hold you in my thoughts and prayers. Sometimes, in spite of all we do, and the best available treatment and advice, an unexpected and painful to hear, outcome results. You're entitled to all of the emotions that result, but have faith going forward that you've got this. Breathe! Peace will come and a new plan will be made. You're resilient and powerful. Many people are praying for you now and we'll hold the high watch for you.

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@jgallagher04921

I am so very sorry!! I can understand your shock! Were you on Tamoxifen or AI? How did this on get found?

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I was on Tamoxifen, 10 mg. for 1 1/2 years. I had too many side effects. Mood swings, aches; and developed gallstones. That was my, particular, set of symptoms. I was told that with my diagnosis, I had a very good chance of no recurring cancer, by my Oncology N.P. She even chose to order me a Screening Mammogram for this year, not another Diagnostic mammogram! I asked her to reconsider, and she would not! So I had to go outside my Cancer Center to get a Diagnostic mammogram ordered for this year. They found a suspicious mass that wasn't on my last Diagnostic mammogram. I had a biopsy the next week and it is same as last cancer, but grade 3. I am awaiting the results of a Breast MRI, in order for my surgeon to decide the type of surgery I will need. I have have been called a cancer survivor. I am glad I never bought into that term, and have been vigilant.

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