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

Posted by kszilvia @kszilvia, Jun 26 11:57am

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.

And I am 49 years old

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Hi @kszilvia and welcome to Mayo Clinic Connect. Our members can't offer medical advice, but they can offer personal experience! Thank you for sharing your results.

I'd like to introduce you to @cindylb, @sandyjr, and @elizm who are members of the Breast Cancer Group.

You might be interested in this article I found.
https://consultqd.clevelandclinic.org/no-survival-advantage-from-chemo-endocrine-therapy-over-endocrine-therapy-in-invasive-lobular-carcinoma/#:~:text=The%20combination%20of%20adjuvant%20chemotherapy,Cleveland%20Clinic%20investigators%20have%20found.
@kszilvia, Are you considering the chemo?

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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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@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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Hi, thank you for your reply!
My HER2 was negative.
The radiation seed was inserted only for 2 days. It was useful for them to find the location of the tumour. At least that is what I understood.
And they also checked to which lymph nodes it leaks to and they removed 4 accordingly. However they came back negative.
I still haven’t decided on chemotherapy yet.
I have a meeting on August 10 with the doctors to decide.

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I found it helpful to have someone with me at my appointments. I also found it immensely helpful helpful to write down questions before I went so that I would not forget any. I am glad her2 came back negative, however the onco score is high. One of the big questions I would ask is risk vs. benefit of chemo. Remember you don’t have to decide on the spot either. How are you feeling after your surgery?

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Mine came back at 19 and my Oncologist left it up to me to decide. He suggested that my number was low enough and the effects of chemo were great enough that it might not be worth it. I opted against and have, so far, been cancer-free for 7 years. I wish u well in your decision but I think I would opt for no chemo in your case.

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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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@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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I am so sorry it came back. How are you doing now? Can you tell more about your cancer journey? Type?

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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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@auntieoakley

I am so sorry it came back. How are you doing now? Can you tell more about your cancer journey? Type?

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Well it’s metastatic now. Diagnosed April 2000. Going through all or at least some of the target therapies. Ibrance for a year now Afinitor. Probably a newer one depending on scans in September. Feel ok side effects minimum. Worse part is I no longer can drink red wine due to the mouthwash prescribed for mouth sores which works great.

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I am glad you have the mouthwash, but I am really sad that you cannot enjoy your red wine anymore. I used to enjoy a glass here and there, but chemo cured me for good. I am glad you are still looking at treatments, there are so many new targeted therapies, you just never know which one is going to change you life. It sounds as if you have a good plan, are you working with a large cancer center? How are you feeling other than mouth sores?

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@auntieoakley

I am glad you have the mouthwash, but I am really sad that you cannot enjoy your red wine anymore. I used to enjoy a glass here and there, but chemo cured me for good. I am glad you are still looking at treatments, there are so many new targeted therapies, you just never know which one is going to change you life. It sounds as if you have a good plan, are you working with a large cancer center? How are you feeling other than mouth sores?

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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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