What is the prognosis for a triple negative apocrine breast cancer?

Hi @constantinos. You may be interested in the experiences shared in this related discussion:
- Just diagnosed with triple negative breast cancer https://connect.mayoclinic.org/discussion/just-diagnosed-with-trip-negative-breast-cancer/

Prognosis is a difficult question for fellow members and patients to answer. Your wife's oncologist can give you better information about your wife's specific prognosis related to her breast cancer diagnosis as well as personal factors like her medical history, health status, tumor response to treatment, age, etc.

I found this general (and hopeful) information in a study "The outcome of selected apocrine triple negative breast cancer patients is excellent..."
- Prognosis of selected triple negative apocrine breast cancer patients who did not receive adjuvant chemotherapy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7424227/

I completely understand the question and the desire to know what lays ahead. Has your wife completed chemotherapy treatment? How is she doing now? How are you doing?

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!

Thanks.

Thank you Colleen for the link to the article. I had a similar apocrine feature ILC tumor that was TNBC diagnosed 12/22 plus an hormone driven IDC in the second breast and I went to Mayo in Rochester for treatment. The tumors were both stage 1a with low Ki67 scores, 5% on the TNBC and 13% on the IDC. I had a bilateral mastectomy and my oncologist at Mayo and the tumor board there decided on no chemo for me. Seeing the study you provided was very helpful. It made me feel that my husband and I made the best decision to go to Mayo for treatment. We live in Michigan so it’s quite a drive but worth it. Thank you d1ana also and sending healing and wellness wishes to you and constantinos and his wife❤️

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?

I asked my surgeon to test for the androgen receptor because I personally wanted to know. It did not change my oncologist treatment recommendations. It did lead me to not following those recommendations because it led me to requesting the PAM50. I do not know as much about lobular carcinoma but go to "google scholar" and do a search. You can filter by years to get the most recent studies. Later tonight I will check and see if I have saved any info about lobular.

I did want to add an additional comment about triple negative cancer. As it has been explained to me, it is a term coined by the pharmaceutical companies. It is a catch all phrase based on estrogen, progesterone, and HER2 testing. Basically, we have approved pharmaceuticals to treat those three targets. So that is all that we currently test for routinely. And luckily, most breast cancers will fall under one of these categories. But, if you don't have one of those receptors, it became common to call your cancer "triple negative". And again, not all TNBC is the same as I described above. And apocrine triple negative is getting a lot of research attention right now because apocrine cancers are often androgen receptor positive. There are studies looking at using some of the prostate cancer drugs to treat apocrine TNBC (prostate cancer is androgen receptor positive as well). So there is hope for treatments in the near future that do not currently exist today. This will improve the prognosis of these cancers.

Thank you. I am familiar with that research. Cleveland Clinic is also doing some interesting TNBC research. Agree that there are new developments on the horizon.

@drummergirl Wow! Do I ever feel the same way!!! Now I have lots of questions and need to go back to the pathology report!!!