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.
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Thanks for sharing! That is very interesting. I didn't have a great response to neoadjuvant chemo and have wondered if I might be androgen + . I'd be interested to know what you learn about it. Best of luck!
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Hi, Sam0623. Thanks for posting. I had known nothing about Androgen receptors until the pathology report for a biopsy of my tumor included a line with an Androgen Receptor %. The number is only 10% so I don't know if that considered negative or low. (does that make me the extra special quadruple negative?)
I've been planning on discussing it on Friday with my oncologist at my pre-chemo appointment. I'm being treated at MSK. I hope your appointment there about the trial goes well.
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Hi Agatha,
The Dr I saw about this trial was also at MSK. I was really impressed with her, I think you will find them very knowledgeable on this topic. I live in a smaller town in Michigan and recieved my chemo at a community hospital, but even at the larger Michigan teaching hospitals I went to they didn't know much about AR, other than that it is not as common in tnbc and it would be a good thing if I tested positive. The Dr I saw at MSK said everything over 0% is considered positive, so you are AR positive. Some studies I've read either say over 0% or 10% is positive, but either way you are positive. It shouldn't change your chemo at all, but it will influence any clinical trials you do after you finish chemo (if you decide to do one).
Best of luck at your appointment this week! I wish more places tested for these things up front- I had to request the test myself and chemo and surgery and then call the lab several times to get the results. Mine was pretty high positive (in the 70s) and knowing this would have changed our expectations for chemo because hormone driven cancers don't respond as well to chemo.
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Thank you so much for all the info, Sam.
Is the MSK trial the one about Enzalutamide that is on their website? I'll definitely bring up the trial and any possible chemo implications at my appointment tomorrow.
I am only going in for my 2nd chemo infusion tomorrow, but I am meant to be having the same chemo regimen you list in your signature. May I ask if you are going to have radiation?
Thanks again for the information!
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Yes, the trial is for adjuvant Enzalutamide after you are finished with your standard treatment. I unfortunately do have to have radiation, which I will start next week and then the trial doctor wants me to go on Xeloda for 6 months prior to starting the trial. Based on this, I probably won't enroll in the trial until July.
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Hi, Sam. I also am going to do Xeloda after surgery. My MO said if the Enzalutamide trial is still ongoing she'll add that on after the Xeloda. Like you mentioned it feels good to have other treatment options even though we are TN. Thanks for your help.
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Hi Agatha- No problem. I hope we can both get into this trial. Who is your Dr at MSK?
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Hi - Sam. My MO is Jackie Bromberg.
Did you meet with the research team or an oncologist?
Yes, I hope we can get into it and that we won't be the placebos :-)
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I saw Dr. Traina who I believe is leading the study, but is also an oncologist.
Good news- the study is not a blind study, so if we get in we definitely won't be getting a placebo! 😊
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That's great news about no placebo. Thanks for telling me!
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My doc told me that this trial is for metastatic stage IV. Can anyone confirm?
I'm Lobular Triple Negative. Just completed neoadjuvant ACT with carboplatin. Had minimal (no) tumor shrinkage but was told MRI showed some reponse in that tumor was now less active. Totally bummed after going thru all this chemo to have less than 1.5 cm shrinkage. Also wondering if the 1.5 cm reduction is simply due to the biopsy, which removed 1.5 cm of tumor.
I will be having surgery in January and they will be testing my tumor for AR. I believe that they will be suggesting xeloda, and/or a vaccine for me.
This is definitely "some godless, fucking bullshit."
Eve
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Lightseeker,
I can confirm this trial is not for stage IV. I met with the lead investigator, Dr Traina back in October and was told I qualify but she wanted me to do Xeloda first, after radiation. She even gave me the informed consent to read over in the meantime. AgathaNYC is being treated at MSK, where the trial is taking place and was also told she is eligible as long as its still open after she finishes her standard treatment (she's a few months behind me).
You can find more here:
https://www.mskcc.org/cancer-care/clinical-trials/...
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Hi Sam,
Thanks for reply. I actually googled and searched after I made this post and found the info on the MS website. I've sent Dr. Traina an email, explaining my situation. I'm not sure if I would qualify because I had Gastric Sleeve surgery and there was something about gastrectomy as a dis qualifier? I imagine this is related to absorptive issues; I hope it won't disqualify me, as I have no issues with absorption.
I believe that I will test + for AR; Lobular cancer, that is also Triple Negative, is rare and has also been referred to as AR+
Out of curiosity, because you tested positive for AR, had you been using Depo Provera before the onset of your breast cancer- it's actually and anti-androgen. I was a twenty year user of Depo; I stopped the depo before my sleeve surgery, restarted but, then stopped again for hernia repair surgery. Five months later I developed this huge tumor. I'm wondering if my long depo use caused an up-regulation/increase in my Androgen receptors? I've received Mammo/sono for 10 years, with no cancer detected. I even had a lung CT, five months before my BC dx, and no abnormalities were noted.
Thanks again for your reply. Good luck on this fucked up journey, we find ourselves on
Eve
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Lightseeker,
I never was on depo, and actually haven't been on birth control for probably close to 10 years. I did have a baby a little over a year before I was diagnosed. I'm not sure that didn't contribute to it in some way. I also had a chest CT about 6 months prior to being diagnosed, but was told that this only would have showed up if they used contrast (which they did not). I am too young for regular screenings, so just found it one day putting on a bathing suit. Of all the possibilities of what it could be honestly cancer never crossed my mind.
I hope you hear back soon. I was really impressed with Dr Traina. She has an upbeat demeanor and specializes in triple negative (and also specializes in AR+ TNBC). She is one of the few doctors I've seen since my surgery that made me feel like this isn't definitely going to kill me. I felt totally hopeless after chemo didnt work, and no one knew what to tell me what to do- like it wouldnt matter anyway. How was I supposed to move on and do more treatment with hope like that?
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Hi Sam,
My Onc just ordered androgen receptor test on my previous biopsy from June, so I'll know soon enough. The Dr. who read my MRI actually showed me the films and how she compared them to conclude that there was some response to chemo, even though size did not change. Also, met with plastic surgeon tonight, so I should be having surgery soon. I'll be happier when this tumor is out of me.
I'm not sure if my lung CT had contrast; my abdominal one did, though - not sure it went high enough to see breast. The same Dr. who is now handling my films looked over all of my past mammo/sono and saw no sign of tumor, the 9 months prior to dx, so it grew very quickly - it measured around 5 cm at time of dx.
I will post if I am accepted into AR trial. I wonder if they will want me to do Xeloda or the Vaccine first, as these are becoming protocol for TN? Will see...
Eve
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Hi, Eve -
Simply FYI: my MO at MSK would like to get me into this trial if it is still on-going when I'm ready for it. She's going to put me on 6 months of Xeloda first - no discussion of the vaccine. I don't know if Xeldoa is a requirement of the trial or not, just how I'm being treated at MSK.
Hope you get your AR results and hear back from Dr. Traina soon.
All the best for the new year!
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Hi Agatha,
I'm still waiting for results of AR staining. I'll post when I know. From what I've read Xeloda is becoming protocol, so I imagine it will be prescribed before I could participate in a trial. Not sure how I feel about that.
Happy New Year, wishing you the best
Eve
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Hi lightseeker,
Xeloda isn' required for the trial, but I think Dr. Traina will encourage you to do it. As Agatha said, it is becoming standard for us (at least that is the opinion at MSK). I also read somewhere that they think Taxol and the 5FU chemo (which Xeloda is in that family) may be more effective in AR + TNBC. This hasn't been confirmed via trial or anything, but since I planned in doing it anyway, it seemed like icing on the cake. I'm no Xeloda pro or anything, I'm one cycle in, but it has been super easy so far. I'm actually looking forward to starting cycle 2 on Saturday just to get things moving along!
I hope you don't have to wait too long for your results. My hospital doesn't test for AR, so they had to send it out and it took 3 weeks. I almost cried when the doctor called me with the results. I was just so relieved to have another option.
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I was Negative. I'm surprised.
Eve
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Hi Eve,
I'm sorry the testing didn't work out as you had expected. I have actually hit a hiccup in my own testing - the original lab found the sample positive, 73% with moderate intensity. When MSK did their testing it came back <1% with poor to moderate intensity. You have to be above 1% for the trial so I was a but bummed. They are going to retest, since something obviously seems off here, but when I really think about it I don't know why I was initially upset. I have already done (or are in the processing of doing) everything that has been proven to work for me, so why am I getting upset about not being able to participate in something that hasn't been proven to work yet?
I seem to remember MSK isn't far from you- If you are considering additional treatment, I still think it would be totally worth it to go see Dr Traina and ask for her suggestion on what you should do next. She is an expert in TNBC, and while telling me I would not be eligible for this trial if they can't confirm my AR testing, she already had another idea of something else I might be able to do.
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Lightseeker - Like Sam said, it might be worth it to contact MSK since it seems like they do their own testing. Perhaps they will come up with a different result.
Sam - It's definitely weird that the MSK test came back with such different results. Sorry you were initially so upset but it seems like you are feeling better about it now. I'm glad you are still speaking with Dr. Traina.
All the best to you both - this triple negative cancer of ours is a bitch.
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Im not sure but I'm inclined to think that my sample may have been sent out to MSK due to proximity. Don't know when I'll get a chance to ask. My family is begging me to stay off the computer. I'm scheduled for surgery on Friday, so I guess I'll know about margins and sentinel node in a couple of weeks. The waiting is hard.
My friend did adjuvant so she doesn't really know how her cancer responded - but she is much more at peace than I.
I am down this rabbit hole and it is killing me
Thank you both for the connection - it gives me comfort.
Eve
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Eve,
I totally agree with you regarding the anxiety that goes along with neoadjuvant chemotherapy. After the shock of my initial diagnosis, my anxiety wasn't bad because it seemed as though the chemo was really working. I actually remember having a conversation with my husband over the summer about feeling so lucky that I was responding so well to treatment. I thought for sure (and my Dr's did as well) I was either going to have a PCR or very close to it. Finding out the exact opposite was the worst I've felt this entire time. It' a double edged sword because now I know I need more treatment, but it has been so much harder to move on with my life. In this case, I do think ignorance to a certain extent is bliss. I would be sleeping a lot better at night if I didnt know.
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Dear Lightseeker - I'll be thinking of you as you have surgery later this week. I'm a month or so behind you on this trip. The waiting for results is so rough. I'll be with you in spirit. I hope that you get good news from your post-op pathology.
I go back and forth between thinking ignorance would be bliss and wanting the comfort of knowing what's really going on, even if it's not great. I'm probably better suited for the latter.
In the meantime I'm trying to improve my overall fitness and get my weight in a healthy range. I think that's the thing that will benefit me the most in the long run.
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Hi guys,
AR testing was not done at MSK.
My MO suggested that I get a second opinion from MSKCC. I'll be doing that after surgery.
They retest tumor for pathology and a second opinion will also review.
I'll stay in touch on this thread.
Eve
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Best of luck, Eve. When is your surgery? Please keep us posted.
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Good luck with surgery Eve! I personally found that to be the easiest part.
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Hello lovelies on this forum, I also have TNBC and noticed on my pathology report the Androgen receptor was positive in 100% of the tumor cells, so I found your post really interesting. I'm no sure if it is standard in Australia to tests for Androgen Receptors and if this has anything to do with the treatment thereafter. I have done some research on previous studies on AR and it seems everything is being done from the US. I am also travelling through the neoadjuvent treatment plan and have just finished radiation with surgery scheduled for February, I've been told my breast cancer wont be given a stage until after surgery and I'm hopeful for a pcr. Wishing everyone the best from a hot summery Melbourne, Jen.
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Hi, Jenaus -
It's interesting that you are doing radiation before surgery. I think most of us in the US do it after surgery. I hope you get that pCR !!!
My niece is about to leave for her semester abroad in Melbourne. She hates cold winters so she'll be so excited it's hot and summery there :-)
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Hi guys,
It's taken me a few days to be able to post. As usual, it's the emotional pain, not the physical, that stops me in my tracks.
I had my surgery on Friday. During surgery, sentinel nodes showed a few cancerous cells (two did, two did not) so, standard of care dictates axillary node dissection. Doc took levels 1 and 2. I was told that I may need the full 10 days for pathology report as they took approximately 200 grams of tumor/tissue, about a quadrant and this is a lot of tissue to examine.
Now, of course, I am afraid of nodal involvement, lymph-edema, death....
When I was a kid, I was savagely abused from age 6 thru 16. Then my abuser went to jail (still there
and I lived a peaceful, abuse-free life for the last 34 years. This breast cancer experience is very similar to those times. I am pelted, I catch my breath, I'm pelted, I catch my breath. I wonder if I'll have the resilience that I had as a kid - I think that is what I am going to need. And luck, of course:)
Hope everyone is hanging in. xoxo
Eve
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