1. < Breast Cancer

Newbie: diagnosed with invasive ductal carcinoma (IDC) triple negative

Posted by hkc9890 @hkc9890, Dec 12, 2020

I was diagnosed Wednesday before Thanksgiving, invasive ductal carcinoma, triple negative. Next Tuesday meet the multidisciplinary team. I am a Nurse, but no oncology experience and waiting to hear what’s in store. Anybody have the same diagnosis and have any advice while I’m waiting for the plan?

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drummergirl | @drummergirl | Dec 25, 2022
In reply to @sharonemma "I was diagnosed in April 2022 with TNBC. I did twelve weeks of Carbo / Pacitaxel..." + (show)
@sharonemma

I was diagnosed in April 2022 with TNBC. I did twelve weeks of Carbo / Pacitaxel /Immuno on the ISPY 2 study then switched to AC x 4 every three weeks with Pembro. Then surgery. They want to see how the meds affect the tumor before removing it. This is different than other Hormone positive cancers where they want the tumor removed first. Immunotherapy (Pembro) continues after surgery. Since I had surgery 12/9 and a smaller tumor was still there with active cancer, I will have to take oral chemo drug for 8 rounds of 3 weeks with pembro. As the combination of those two reduce the reoccurrence by half. I was negative for BRCA and other genetic markers, no family history, and opted for double mastectomy to see if I can avoid radiation. I hear from radiologist 12/29.

Look up Keynote 522 study if you want to see a standard of care many use to treat TNBC. Pembro is a key part in the 65% complete result response, meaning tumor is dead by time you have surgery. This gives you teh best outcome for reoccurance which is highest in the first three years.

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I had the same diagnosis. I am interested in where you were treated and how old you are. My treatment plan was very different. I was 72 when diagnosed and was in good health, but not recommended for more aggressive treatments due to age. Good surgery and no lymph node involvement. I did have ATM gene. Not familiar with the study you reference, but will check it out.

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1 reply
sharonemma | @sharonemma | Dec 25, 2022
In reply to @drummergirl "I had the same diagnosis. I am interested in where you were treated and how old..." + (show)
@drummergirl

I had the same diagnosis. I am interested in where you were treated and how old you are. My treatment plan was very different. I was 72 when diagnosed and was in good health, but not recommended for more aggressive treatments due to age. Good surgery and no lymph node involvement. I did have ATM gene. Not familiar with the study you reference, but will check it out.

Jump to this post

I was 49 when diagnosed. No major health issues. I get treatment at Mayo Clinic in Rochester MN. From what I understand survival is over 80% with surgery alone. So that is the best option.

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2 replies
sharonemma | @sharonemma | Dec 25, 2022
In reply to @sharonemma "I was 49 when diagnosed. No major health issues. I get treatment at Mayo Clinic in..." + (show)
@sharonemma

I was 49 when diagnosed. No major health issues. I get treatment at Mayo Clinic in Rochester MN. From what I understand survival is over 80% with surgery alone. So that is the best option.

Jump to this post

Well between 75%-83% survival with surgery alone. it depends on the source. Immunotherapy /Chemo and radiation only add single digits to that surgery number.

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drummergirl | @drummergirl | Dec 25, 2022
In reply to @sharonemma "I was 49 when diagnosed. No major health issues. I get treatment at Mayo Clinic in..." + (show)
@sharonemma

I was 49 when diagnosed. No major health issues. I get treatment at Mayo Clinic in Rochester MN. From what I understand survival is over 80% with surgery alone. So that is the best option.

Jump to this post

Yes, I did chemo, then surgery, then more chemo. Thanks to Mayo, Jacksonville, I got the right advice, after getting wrong advice from first oncologist at another hospital.
Treatment is very different for us, so really appreciate your reply. Cleveland Clinic is working on a TNBC vaccine. Good things happening. Your treatment sounds very positive and you have every reason to be optimistic. All the best.

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lnlowe70 | @lnlowe70 | Dec 25, 2022
In reply to @sharonemma "I was diagnosed in April 2022 with TNBC. I did twelve weeks of Carbo / Pacitaxel..." + (show)
@sharonemma

I was diagnosed in April 2022 with TNBC. I did twelve weeks of Carbo / Pacitaxel /Immuno on the ISPY 2 study then switched to AC x 4 every three weeks with Pembro. Then surgery. They want to see how the meds affect the tumor before removing it. This is different than other Hormone positive cancers where they want the tumor removed first. Immunotherapy (Pembro) continues after surgery. Since I had surgery 12/9 and a smaller tumor was still there with active cancer, I will have to take oral chemo drug for 8 rounds of 3 weeks with pembro. As the combination of those two reduce the reoccurrence by half. I was negative for BRCA and other genetic markers, no family history, and opted for double mastectomy to see if I can avoid radiation. I hear from radiologist 12/29.

Look up Keynote 522 study if you want to see a standard of care many use to treat TNBC. Pembro is a key part in the 65% complete result response, meaning tumor is dead by time you have surgery. This gives you teh best outcome for reoccurance which is highest in the first three years.

Jump to this post

Thanks for the reference to that study and all the reading associated with it. It's kept me occupied over the last hour since I read your message! I was diagnosed with TNBC in Sept 2021, double mastectomy in October, and chemo from November through January (four infusions, taxotere and cytoxan). Other than a bout with (and continuing concerns about) lymphedema, I'm ok. I am doing Zometta every six months...my onologist says it'll reduce the risk of cancer's return by 1%. Uff da, but I'll take whatever percent reduction I can get! Anyway, thanks for your post and the reference to the study! Hope your recovery is completely uneventful, now and into the future!!!

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