Anyone have low estrogen (ER) breast cancer (PR-, HER2-)?

Posted by cancerwifemom @cancerwifemom, May 20 8:36am

Anyone else have low ER, PR negative and HER2 negative cancer? It’s a rare subgroup, and can behave more like triple negative. I’m about it have my 6th of 8 chemo sessions and my oncologist wants to try tamoxifen for 5-10 years. He believes that any amount of estrogen will respond to hormonal therapy. My first opinion oncologist was going to do the same but also try to get me on keytruda and was going to throw in Carbo with my ACT. 2nd option (current doctor) said no Carbo and no keytruda- my tumor was 3.5 cm, grade 3 and I’m stage 2b- no lymph node involve or lymphovascular invasion. I’ve had a double mastectomy with failed reconstruction. Just looking for anyone with a similar diagnosis to mine. I think I’m comfortable with my treatment plan. My tumor also has medullary features and was believed to have been a fibroandenoma before the biopsy revealed cancer. No genetic mutations and I’m 41.

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@auksst

Did you have an oncotype test?

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3 different oncologists all agreed that an oncotype wouldn’t provide additional data. Due to my age and low hormone status, chemo was already a given. I have 3 more sessions of chemo left. Im sure I would have had a high oncotype a score…my ki 67 was 40-50%, grade 3 35 mm tumor that popped up pretty quickly. With no genetics involved, I sure hope it was a sporadic cancer that doesn’t come back but im scared and can’t find anyone with a similar diagnosis.

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@cancerwifemom

3 different oncologists all agreed that an oncotype wouldn’t provide additional data. Due to my age and low hormone status, chemo was already a given. I have 3 more sessions of chemo left. Im sure I would have had a high oncotype a score…my ki 67 was 40-50%, grade 3 35 mm tumor that popped up pretty quickly. With no genetics involved, I sure hope it was a sporadic cancer that doesn’t come back but im scared and can’t find anyone with a similar diagnosis.

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The odd thing about the OncotypeDX is the unusual results it can yield. The Oncotype website cites a stage 4 breast cancer, with positive lymph nodes, that nonetheless tested at a low 'risk of loco-regional recurrence at 9 years.' And, conversely, a client whose grade 0 tumor, with lymph nodes tested negative, had a very high OncotypeDX recurrence risk score. I had the test done and, as a consequence, spent an hour talking to a lead scientist there and he cited other anomalies in test results where the clinical evaluation was very different from what the gene testing yielded. This is not suggesting that it would have made any difference in the course of your treatment, just to say that there are times when the data it provides is surprising and can lead to a re-evaluation.

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@cancerwifemom

3 different oncologists all agreed that an oncotype wouldn’t provide additional data. Due to my age and low hormone status, chemo was already a given. I have 3 more sessions of chemo left. Im sure I would have had a high oncotype a score…my ki 67 was 40-50%, grade 3 35 mm tumor that popped up pretty quickly. With no genetics involved, I sure hope it was a sporadic cancer that doesn’t come back but im scared and can’t find anyone with a similar diagnosis.

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I know you haven’t found anyone with your particular diagnosis here, but did you check out the triple negative threads? That seems like the closest available. I have been thinking about you, and wonder if you have had a scan yet? How are you doing now?

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@auntieoakley

I know you haven’t found anyone with your particular diagnosis here, but did you check out the triple negative threads? That seems like the closest available. I have been thinking about you, and wonder if you have had a scan yet? How are you doing now?

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I’ve stalked out the triple negative threads here and on breastcancer.org. My hospital paired me up with a girl with a similar diagnosis, so that’s been helpful. I won’t have scans because I didn’t have lymph node involvement. That is terrifying, but apparently the scans provide lots of false positives so for early cancers they aren’t used all the time. Thanks for thinking of me…I did start talking to an oncology therapist about my anxiety, so that is a start. 2 more chemos to go. 🙂

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