How did you decide on breast cancer treatment based on Oncotype?

Posted by kszilvia @kszilvia, Jun 26, 2021

Hello, I was diagnosed with Invasive lobular carcinoma in February 2021. I had the lumpectomy in April, please see the final results attached. I was HER2 – and my genetics testing came back negative as well. Only radiation therapy was suggested at the time.
Now my Oncotype result came back and it is 24. My doctor suggested chemotherapy since I have a higher risk for the cancer to return.
Although he also mentioned to me that chemo usually is not effective for lobular cancer.
Was there anyone in the same situation?
Can I get any advise?
I would truly appreciate any comments.

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@schindler

I am at Mayo. So worth the five hour drive as my medical facility in my home town is lacking and I just discovered my own GP and many other medical staff are not vaccinated against COVID. Another subject I know but it should be mandatory for all health care workers.

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Oh. By the way. Switched to white wine. Good so far.

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@schindler

I am at Mayo. So worth the five hour drive as my medical facility in my home town is lacking and I just discovered my own GP and many other medical staff are not vaccinated against COVID. Another subject I know but it should be mandatory for all health care workers.

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I cannot tell you how happy that makes me!! I have been thinking about you. Please feel free to private message me here on connect if you wish. I would love to just have you over for coffee or tea but connect is still pretty great. We found it worth the 5 day trip to get my husband to Mayo . He has multiple myeloma and they were amazing treating him. Are you at the one in Rochester? Are they running more tests? What are they recommending?

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@windyshores

I would talk to a doctor who specializes in lobular cancers since they are different from ductal. There is a doctor at Dana Farber who focuses on lobular. An Oncotype of 24 is hard to deal with. I would need to know more: size, grade, LVI, ki67% etc. to comment.

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@windyshores can you explain to me why a 24 onco score is hard to deal with? My barn mate just received that number and since I am still learning about oncoDX, I would truly appreciate the understanding.

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@auntieoakley

I cannot tell you how happy that makes me!! I have been thinking about you. Please feel free to private message me here on connect if you wish. I would love to just have you over for coffee or tea but connect is still pretty great. We found it worth the 5 day trip to get my husband to Mayo . He has multiple myeloma and they were amazing treating him. Are you at the one in Rochester? Are they running more tests? What are they recommending?

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Thanks.

In Rochester yes. Since December of 2018 I have made trips there every two months on average. I have scans every two months plus zometa every three months. This is a recent note from my oncologist re future treatment: “In the future, she would be an excellent candidate for the Destiny 06 study of T-Dxd vs physicians choice chemotherapy (which includes capecitabine).” Not sure what that is but will find out.

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@schindler

Thanks.

In Rochester yes. Since December of 2018 I have made trips there every two months on average. I have scans every two months plus zometa every three months. This is a recent note from my oncologist re future treatment: “In the future, she would be an excellent candidate for the Destiny 06 study of T-Dxd vs physicians choice chemotherapy (which includes capecitabine).” Not sure what that is but will find out.

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I can only find destiny 04 as the latest so it may something new in the works. That means more tools in the box. Awesome

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@auntieoakley

I cannot tell you how happy that makes me!! I have been thinking about you. Please feel free to private message me here on connect if you wish. I would love to just have you over for coffee or tea but connect is still pretty great. We found it worth the 5 day trip to get my husband to Mayo . He has multiple myeloma and they were amazing treating him. Are you at the one in Rochester? Are they running more tests? What are they recommending?

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How private message. Duh.

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@schindler

How private message. Duh.

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Just click the little envelope on the top right, and then the compose button.

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@auntieoakley

@windyshores can you explain to me why a 24 onco score is hard to deal with? My barn mate just received that number and since I am still learning about oncoDX, I would truly appreciate the understanding.

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Just that intermediate scores don't have a clear cut decision. By the way the company phone line has well-trained folks who will answer all questions. I had a low Oncotype but high grade and other worrisome pathology results, a mismatch between lab and Oncotype basically, and they explained that 30% of grade 3's have low Oncotype so I was reassured. There is a study on intermediate scores. Breastcancre.org forum is a good resource too.

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@windyshores

Just that intermediate scores don't have a clear cut decision. By the way the company phone line has well-trained folks who will answer all questions. I had a low Oncotype but high grade and other worrisome pathology results, a mismatch between lab and Oncotype basically, and they explained that 30% of grade 3's have low Oncotype so I was reassured. There is a study on intermediate scores. Breastcancre.org forum is a good resource too.

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Thank you so much. There was no such test when I was diagnosed. Even though I read about it, to learn, some things are just more complicated than a simple answer.

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Amazingly I was able to avoid chemo despite my grade 3 tumor. That is the main benefit of the Oncotype. And those with high scores can be sure they are doing chemo because it is necessary. The intermediate scores provide ambiguous guidance.

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@auntieoakley

I had ductal carcinoma, not lobular but I do have experience with chemo. If your pathology came back her2+, did it have a percentage of her2? This could be the reason why your doctor is recommending chemo. Your young age may have something to do with it as well, you have many years to enjoy life after cancer. I noticed on your pathology report that they implanted radiation seeds in your breast during surgery. This is a new type of radiation since I was treated, I hope you didn’t burn from them. I am a new mentor here, but I am hoping you will come back and have a conversation. Did you decide to take the chemo? Do you know what drugs you are taking?

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I had a radiation seed implanted the day before a lumpectomy. The surgeon explained that it helped identify the exact location of the biopsy, using equipment located in the operating room. It was removed, along with a titanium marker also inserted aforehand, during the surgery. I think, but don't know, that the purpose was to be expert vigilant in capturing any rogue cells that might have been displaced during the wide-needle, vacuum-assisted biopsy procedure.

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@schindler

My number was 21when I had a lumpectomy in 2013. My oncologist at the time recommended chemo because if the cancer came back “it will be hard to fight”. I had chemo. The cancer came back six years later and it has been hard to fight but I do not regret my doctors recommendation. I believe without the radiation and chemo in 2013/2014 the cancer would have come back sooner.

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It sounds as if your oncologist called it right, maybe based on some combination of data and experience dealing these cancers. I would also suspect it might have come back sooner, or even more aggressive, without the chemo giving your body a chance to recover to fight again if necessary. That's a success story in a way.

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