What happens if your biopsy shows her 2 negative then after surgery the oncotype test is ordered with the tumor that was removed? While that Oncotype testing is in process the surgery path report shows you are her 2 positive. Later the Oncotype report comes backing showing no benefit from chemo and Her 2 negative score. My oncologist told me the Oncotype is invalid since it is only for her 2 negative cancer. Has anyone else experienced anything like this?
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Welcome to the forum @lesley3845 . Gosh that must be so confusing for you . Hopefully someone who’s been through similar will be able to share their experiences . You could maybe also post about this in the Ask our Nurses your questions section of the forum to see if they can give any info that might be helpful ?
Dear @lesley3845 , I have been through a similar experience but the other way round. My initial biopsy was HER2 positive after FISH test but my tumour biopsy was HER 2 negative after FISH test. Even though the actual tumour biopsy was HER2 negative it was not sent for Oncotype testing so i never knew whether my pre surgery chemo was needed or not but it didnt shrink the tumour. i refused more chemo post surgery and only had half the number of Herceptin injections i was offered post surgery with no clinical evidence to support the recommendation. The NICE guidelines state that a plan should be made based on the post op biopsy results if thats any help as a starting point. It is also right that oncotype testing only applies for HER2 negative because HER2 positive always indicates chemo. So ones HER2 status can change. It doesnt happen often but it does happen. I hope you are recovering well from your surgery and wish you all the very best going forward. love Tulip x
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Hi
Yes I can relate to that. Original biopsy was HER2 borderline. FISH test came back negative. Surgery went ahead. Tumour came back HER2 positive. Oncotype DX score had been ordered, this came back as 24, no benefit from chemo. Consultant said because of the HER2 positive result I would need chemo and Herceptin injections for a year. I am having my 5th chemo next Tuesday.
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Thanks for comments so far. My confusion is this. The oncologist said the results on the oncotype were completely invalid because of being her 2 positive. That test showed a 10.4 for the her type which is negative. The oncologist said some clerk just input those numbers since I never should have had the test anyway. Why would the oncotype report a her 2 score (that can go up into the positive levels) if they can’t accurately compute it? I have called Exact Sciences (company that does the Oncotype) today and they took notes and said they will have a clinician call me in 1-2 business days. Maybe I will have some answers to post up.
I am finding a new oncologist. Mine was a cancer bully and very rude. Which chemo are you having and how are you feeling?
Thank you so much for your reply. I am doing well and I hope you are too, and continue to do good! I am hoping to opt out of chemo and herceptin. I am 65. Physically I think I can do it as I’m active and seem to be healthy other than cancer. Emotionally, I am not so sure. I am getting a second oncology opinion.
Lesley
Hi
I had 3 EC every 3 weeks, then moved on to docetaxel, again 3 every 3 weeks. So far I have had 1 docetaxel which I have to say was far more harsh than EC. I am seeing my oncologist this morning and from what the nurses have told me, he will reduce my dose. As one nurse put it, the standard dose was too much for my body to cope with.
I would say that my oncologist was dismissive of the oncotype DX report, and my plan was based on the HER2 positive result.