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@d1ana

Hi @constantinos I wanted to reply to your post because I was diagnosed with triple negative apocrine carcinoma in April 2022. I have read everything I can get my hands on. I have links for many studies if you are interested. I know that no one can give you a "prognosis" without having more information. It is very complicated and individualized. That is why your oncologist is best to answer this question. But I also know it is nice to listen to other's stories. And since I had additional testing done on my tumor that showed it was low risk to come back later I wanted to share that with you.

In my case, my tumor was 1.2cm mixed with DCIS. Lymph nodes were clear. I had a double mastectomy and no radiation or chemo. Chemo was recommended to me but I opted to have a PAM50 done to help me decide. The PAM50 showed that my risk of recurrence was 22 (low risk). The scale is 0-100 with 0-40 being low, 40-60 intermediate, and above 60 high risk. Since I was low risk and my tumor wasn't dividing very quickly I felt chemo was ok to skip. I am not recommending your wife skip chemo as her tumor was larger than mine. But I wanted you to know that some of these tumors really do have a favorable prognosis. (Side note on the PAM50 test, it is not approved for use by the doctor it is only used for research at this time. So your doctor will probably not order it. Mine would not. But I am a nurse so I found a work around through another doctor).

How can there be a lower risk triple negative cancer? Because not all triple negative cancers are the same. Most of them are "basil like" and aggressive (worse prognosis). But some of them are "luminal" and lower risk (like mine). I ended up having a luminal androgen receptor(LAR) subtype of triple negative. There is overlap between the LAR subtype and apocrine morphology. So my cancer is hormone driven much like estrogen positive cancer. But the hormone mine is 100% positive for is the androgen receptor (male hormone which women also produce). Unfortunately, it is a rare subtype and there are not any large scale studies to support changing treatment guidelines. Therefore, doctors sort of have to treat it the same as triple negative "basil like". But it appears the prognosis is more favorable in some cases. I hope some of this info helps you sort it all out. Best wishes to your wife!

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Replies to "Hi @constantinos I wanted to reply to your post because I was diagnosed with triple negative..."

I had triple negative breast lobular carcinoma, described as a luminal
Androgen receptor carcinoma with specific ESRRA mutations. You are correct that due to no studies on this sub-type of triple negative breast cancer I was thrown in the triple negative bucket and treated with the Keynote 522 protocol.
After chemo and surgery (I did not have radiation, no lymph node involvement) I was told that I have a 25% risk of recurrence base on residual cancer found in my breast. Your comments are very interesting to me. Do you know where I could find any information about recurrence in this specific subtype of cancer? Could it be lower than that in women with more typical (that is, ductal rather than lobular) carcinoma? Any information would be welcome!

Diana- I read your reply with great interest. I feel that I had very little info on my TNBC tumor compared to many others. I read everything I could get my hands on. I knew that androgen was a possibility, but how did you get tested for it and did it inform your treatment?

Why did you have a double mastectomy if i may ask?
What was the ki67 of your tumor?
Ours was a ki67 of 20% and the tumor was 2.7 cm.The latter sets us as T2.I have read that a tumor less than 2cm has a better prognosis.I wish you the best.