1. < Breast Cancer

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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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jul 30, 2021

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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1 reply
schindler | @schindler | Aug 2, 2021
In reply to @auntieoakley "I am glad you have the mouthwash, but I am really sad that you cannot enjoy..." + (show)
@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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2 replies
schindler | @schindler | Aug 2, 2021
In reply to @schindler "I am at Mayo. So worth the five hour drive as my medical facility in my..." + (show)
@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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Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 2, 2021
In reply to @schindler "I am at Mayo. So worth the five hour drive as my medical facility in my..." + (show)
@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.

Jump to this post

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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2 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 2, 2021
In reply to @windyshores "I would talk to a doctor who specializes in lobular cancers since they are different from..." + (show)
@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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1 reply
schindler | @schindler | Aug 2, 2021
In reply to @auntieoakley "I cannot tell you how happy that makes me!! I have been thinking about you. Please..." + (show)
@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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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 2, 2021
In reply to @schindler "Thanks. In Rochester yes. Since December of 2018 I have made trips there every two months..." + (show)
@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

REPLY
schindler | @schindler | Aug 2, 2021
In reply to @auntieoakley "I cannot tell you how happy that makes me!! I have been thinking about you. Please..." + (show)
@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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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 2, 2021
In reply to @schindler "How private message. Duh." + (show)
@schindler

How private message. Duh.

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

REPLY
windyshores | @windyshores | Aug 2, 2021
In reply to @auntieoakley "@windyshores can you explain to me why a 24 onco score is hard to deal with?..." + (show)
@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.

Jump to this post

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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