Has anybody got this or heard of this? So I went to my onc today. I’m only on my second cycle of ibrance and letrozole. The appointment was going well. Just asking about any pains, anything new. I told him I couldn’t really tell any difference since taking the ibrance. I am still having pains in my breast and I can tell I have a pain in my back where the lung tumor I believe is. So he scheduled a ct for February etc. but as I was doing all
this he sent for me. Get this... the path report for my lung biopsy shows that the tumor is er - and HER2 +. +3. The primary tumor in my breast is er + 80% and HER2 - +1. They are complete opposites. What the heck??? The path report says the lung tumors are breast cancer. Any response is appreciated. I’m struggling with all of this.
Thanks yall
Stacy
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Staysha
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I have heard of a few others having the same experience, quite the challenge! Don't be afraid to get a second opinion about your treatment. I am very sorry you are going through this. ♥️
The onc says he is going to let his pathologist study it and bring it before his team. However he has suggested surgery to remove breast tumors and lung tumors if they really are opposites. If anybody knows or has experience with this I’d really love to hear from you.
My tumor is HR+Her2- ALSO No surgery to remove tumor yet.It's been three years feb 9.
We did discuss recently about the removal of the tumor.Oncologist was for it.The surgeon said no due to there being no Data to suggest that I would benefit from the surgery. I hope this helps. I am currently on my first line of treatment (Letrozole 2.5 daily and Zometa infusions every three Months. Lets hope that I am still stable in March. Hope this helps.
My initial dx was ER+ yet when i was dx with mets it was triple negative... it seems really ofd that this happens. My onco said it was false dx because it rarely mutates from one type of bc to another type. My met dx was in my T5 and T11 and when they do a bx on bone and put in formaldehyde it can change. As if that may be the case for you and good luck!
Same thing happened to me started off ER+ but when it was found in my bones I was Triple Negative- I did get a second opinion when I was first dx with MBC. Been on Xeloda and Xgeva since 2016. Not a lot out there .... yet still praying for a magical cure!
Did your onco continue to treat your cancer as ER+? Or TN?
My onco who is at a large teaching center brought my case to tumor boards with other oncos and they all agreed my mets were not genuine TN and treated it as ER+. (False TN positive)
I was dx Metastatic in Jan 2016, i was on tamoxifen and xgeva until i had oestonecrosis of the jaw from xgeva, it all went downhill because a CT and pet scan last month confirmed i had several new mets. Now I’m on ibrance and letrozole.
Been treated as TN - following a second opinion- my doctor is Leary of xgeva- due to the bone jaw effects- going next week for labs- 15-3 is on the rise - he gave me a shot last time- I think they are worth the risk. Thanks for you reply
Right now I’m still on the letrozole and ibrance. He’s supposed to call me this upcoming week and let me know what they decided after bringing my case before his team of doctors.
Although a little more rare there are situations where the biology if the tumors can be different. But what I don’t understand is why your ion ibrance with a her 2 positive cancer did you have chemo and herceptin? I think I would want a second opinion.
I’m only in the middle of my second cycle. I found out I had breast cancer in nov and stage 4 in dec. Just discovered that the lung tumor is different. The breast tumor is er+ and her2 - I sure my treatment is about to change.
My original bone Mets were the same as initial. eR positive and Her2-. I’ve had no luck w 3 rounds of hormonal -Ibrance/letrozole, afinitor/exemestane, and faslodex. During the hormone therapy it spread to liver. 2 of the oncologist thought it was a strong possibility It mutated to TNBC. Finally was big enough to biopsy liver and send for molecular sequencing. It’s still eR+ but I have a mutation that makes it resistant to hormone therapies. I hope to start in a trial next week that targets FGFR mutation.
I don’t think it’s impossible...I think it’s two possible scenarios-the original mutated or possibly a second BC? Either way, I’m comfortable w my oncologist but have gotten second opinions. The second opinion oncologist told me she has individuals come for second opinion w every change in protocol. Sometimes it’s just reassuring, sometimes they explain it all better. As my husband says, this is not just a broken ankle. ❤️
I'm really sorry to hear that hormone therapy has not worked for you. I also have the FGFR mutation and I also have been on the same rounds of hormonal therapy. For how long were you on the three therapies? My last scan showed progression to my liver (originally was in my lungs and some bones). I agree with you about second opinions. I have done the same and although there has been no disagreement about next line of treatment, it has been reassuring every time.
I did 4 months w Ibrance combo, 3 months w afinitor combo. 1 month w the faslodex. They stopped the faslodex once the sequencing came back. I assume because the FGFR mutation from what I’ve read makes it hormone resistant. I will start the MATCH trial, I hope, on Tuesday. The cancer center approved me. Just waiting for pharmaceutical to approve me. Hopefully they will. I know they want candidates that will be successful. I’m not sure if another condition would exclude me. That’s good you’ve had sequencing done. 🤗
Thanks so much for your response. I'm going to talk with my oncologist about the MATCH clinical trial. I'm happy to hear you have qualified. I'm hoping and praying you get good results.
I read a study somewhere that breast cancer mutates about 30% of the time when it travels through the body, so I don’t think it’s that unusual and that is why they do biopsies. Mine went from 99% PR positive to PR negative when it went to the liver. The good news with yours is the HER2 positive means you can ask about perjeta/herceptin which has worked well for many people.
But what about the original breast tumor. It’s er+ and Her2- I still have it all because of the stage 4 diagnosis from the get go. When the onc saw that in the path report he stated that we may just remove all of it surgically. It seems that every appointment I go to it’s worse news. Thank y’all for responding.
I’m not seeing it as bad. The more positive receptors you have, the more tools available. Surgery is one more tool. I would want to understand from the Onc why surgery is proposed now and not before. I don’t understand how a change in receptor status would change the decision for surgery. I also think that if surgery is proposed, that can be positive because that means your Onc thinks it will benefit your overall survive ability. My understanding for stage 4 de novo patients is that surgery of the primary tumor does not help survivability, so is often not the standard course of treatment unless the doctor thinks there is a benefit.
My tumors have changed biology three times. From what I understand, tumor characteristics change between primary and metastatic at least 30% of the time. It’s unknown how much it happens from mets tumor to mets tumor. A study was done biopsying all the mets tumors from those who died of stage 4 breast cancer. There was at least 40% difference between the tumors found in the average body tested.
This happens. This is why they like to biopsy so they know if the tumors are the same or are different. They can even be different types of breast cancer. Infiltrating Ductal Carcinoma IDC, Invasive Lobular Carcinoma ILC, Ductal Carcinoma InSitu DCIS or another of the forms of cancer. I also heard if it spread from breast and became stage IV metastatic the new tumor has a 10% chance of the hormone receptor and her status being different than the original tumor.
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Hi everyone.. here for some support.
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