Androgen Receptor Positive TNBC
Has anyone had their tumor tested for AR?
I had a very poor response to neoadjuvent chemotherapy, which was a surprise because I had a complete clinical response, and am pretty young- which are both usually indicative of a good response to chemotherapy. I have been making rounds on second opinions since getting my surgical pathology because my doctors and I were all really surprised by the final results. Apparently tumors that are AR positive are less likely to respond to chemotherapy (only 10% have a PCR), are more likely to spread to the lymph nodes, but still tend to have a better prognosis (there is some data contradictory to this- but the most recent data seems to show this is a good factor). It's also not super common (only about 20% of TNBC tumors will test positive for AR).
I have found this site to be very helpful to me- so I wanted to share my experience. It turns out my tumor is AR positive, and a pretty high positive at that. I had to request this test, as its not usually done because there aren't any proven therapies for it yet- but I still think it could be helpful for people like me trying to make decisions regarding what to do next for treatment.
There is a trial at Memorial Sloan Kettering in which they target AR, similar to how ER or HER2 are targeted for ER+ or HER2+ cancers. They are also doing a trial at MD Anderson where they target AR and give neoadjuvent chemotherapy at the same time to see if it increases the chances of getting a PCR.
Obviously we have no idea if this will work- but I think its promising. I have an appt in NYC later this week to learn more about this trial now that I know I am positive. I was told by 2 doctors that I probably wouldn't test positive because my tumor seemed "too aggressive" and "its more common in older women." Well- at 32 here I am.
I just wanted to bring this up, because we do have options- Just sometimes we have to push for them. If your doctor tries to dismiss you because he/she doesn't think you will test positive for this (or maybe something else)- Push for it! I'm not sure if my insurance will pay for it or not, but at the end of the day I am happy to do so- I finally have some clarity. I don't know about others, but one of the most frustrating parts of being diagnosed with TNBC for me was knowing they knew what I didn't have- but they didn't actually know what I did have. I feel like this at least partially answers that question.
I will be happy to share what I find out here if anyone is interested. I also went to MD Anderson for a 2nd opinion and received a online 2nd opinion at Dana Farber. I understand how fortunate I am to be able to travel to all these places to get advice, so I am happy to share anything I learn along the way.