I was ER-, now I'm ER+!
 

Got a call from my oncologist's nurse today, she informed me that they dug up my old lymph node tissue specimens and tested them for ER status. My onc had some suspicion that my isolated bone mets were behaving more like ER+ tumors, but the original tumor (in the breast) was ER-, way back when. He decided to test the lymph nodes and lo and behold- the cancer there is ER. To me this is huge, this is hope and I feel this is answered prayers.

He said that he'd been in oncology for a long time, and rarely gets this fired up about something- he thinks we may just have this "tiger by the tail", in his words. Course, we didn't test the current bone mets and its been a year since those lymph nodes were in my body, but there is hope that blocking estrogen now could buy me some time and maybe even more. So going to continue on Tykerb, Herceptin, Xgeva and now add Zoladex and Femara to the mix. Maybe down the road I will have surgery to remove my ovaries, but not this month.

How could this happen??? Doc thinks that there were two cancers in the breast initially, and the ER+ one metastatsized to the lymph nodes and then to the bones, and the ER- one completely responded to the neoadjuvant chemotherapies (FEC, Herceptin, Paclitaxol) and was reduced to stage I/DCIS. It is also entirely possible that the first testing gave a false negative, or the tech and pathologist were drunk- but doc assured me that the pathologist is excellent (same guy both times).

I am so thankful for this renewed hope. I really feel for everyone else fighting and hope that my sharing this story will inspire others to inquire about changes in receptor status.

Somethings to think about:
ER/PR false negatives DO happen! Just google the frequency. I'm sure the same is true for Her-2 status.

My cancer was not behaving like typical ER-, Her-2 cancer: it was limited to only bones, grew very slowly and hadn't spread to any other organs. This was a red flag to my doc as it was not behaving like ER- disease, and more like ER+. If your cancer isn't following the anticipated trend- maybe its not what the doctor's think-ask!

The ER/PR staining procedure- is a qualitative assay, meaning someone looks at a control tissue slide, looks at your tissue slides and then asks himself, is this one significantly darker than the control? I have done these assays during my PhD research, and it is very subject to human error and human bias. It depends on how many washes the slides got, how long the tissue was fixed, how long were they blocked to prevent excessive background staining, how well the positive and negative controls worked.

Much love and Huggs going out to all of you!!!

Re: I was ER-, now I'm ER+!
 

Bingo..and the fact that not all met sites are biopsied makes this all the more variable.

Even though my mom got months of stability out of Herceptin monotherapy (a gamble at the time)..and her2 serum was elevated...available biopsies will exclude her from TDM1. Not to mention that treatment is thought to change these variables.

But 2 results from same tissue, same lab, same pathologist? As you say..huge.

Re: I was ER-, now I'm ER+!
 

Now you have lots more weapons to fight with as there are at least 1/2 dozen anti-hormonals to use.

It does validate second opinion pathologies from large research cancer centers.

This is actually good news. ER+ bc does love the bones (far more than ER- cancer). Especially if its just the bones versus bone and soft tissue.

Re: I was ER-, now I'm ER+!
 

Becky- I jumped for joy with the idea last month when he said he had suspicions of ER+, but now that its REAL- I'm freaking excited as HELL. Bye bye estrogen, hello future!
I guess I didn't realize there were lots of anti-hormonals. I just figured we'd give the drugs a shot, and then I'd get my ovaries out. Any advice out there? Surgery or drugs?

Re: I was ER-, now I'm ER+!
 

Hmmm...interesting. Surgery is more definitive..but stresses the body in undesirable ways

Re: I was ER-, now I'm ER+!
 

Kristin,

This is great news I am so happy for you and hope now that you get the pesky little suckers under control - I can't stop smiling for you - well done oncologist too!

Jenny xx

Re: I was ER-, now I'm ER+!
 

Hooray!!!! I had something similar happen to me when I was diagnosed at a clinic. They told me I was about 5 % ER+ and that they didn't think that giving me Tamoxifen would help. Stanford disagreed and later I had them re-test my tumor and indeed it was over 30 % ER+, strongly making the case for anti-hormonal. I've been taking it since 10/09 without many side effects. I still get my period but not every month.

Your chances of becoming NED have now greatly increased. Awesome news!!! Congratulations!!!

Marcia

Re: I was ER-, now I'm ER+!
 

Congratulations! [Strange thing to say - but you've got an additional weapon to fight the beast 'accurately'!]

I was put on Tamoxifen even though the ER portion is only 5 %. I think my oncologist prescribed me Tamoxifen because research had shown that it's effective even when the ER+ number is low. Perhaps he had taken into account of the possibility of 'change', 'mixed cells' and 'misreading'...

Re: I was ER-, now I'm ER+!
 

Kristin

You are very young to get your ovaries removed. I did get mine removed but I was 46 at that time. Lupron or Zoladex shots along with an aromatase inhibitor (there are 3 - Arimidex, Femara and Aromasin) should do the job - chemical menopause versus surgical menopause.

Another option is Faslodex (since you are stage 4 - it is only stage 4 approved). This monthly injection degrades the estrogen receptor. (I think the first month, you get 2 shots 2 weeks apart to get the concentration up and then its just monthly thereafter). There was a stage 4 woman at my cancer center who was getting Faslodex shots, was also on Arimidex and getting Herceptin. Anyway - don't forget to discuss Faslodex with your onc and see what he has to say. It would be interesting to get his take on this drug (which Dr. Slamon says is the way to go in Her2+ women).

Keep us posted.

Re: I was ER-, now I'm ER+!
 

Great news! I did Zoladex and Arimidex for 5 years and had a few side effects, but nothing bad. The shots can be a bit painful, but when an experienced doc gives the shot, it's not bad at all. I sometimes had some ugly bruises, but most of the time it was plain uneventful. A friend of mine, who progressed on every other drug, now has stable disease after just a few months of Faslodex and one of her mets even shrunk a bit. Removing your ovaries is, ofcourse, a big step. I'd try the shots for a while and decide later.

Hope this works really well for you! Isn't it wonderful to have more treatment options? May you get lots and lots of mileage out of this!

Love

Jacqueline

Re: I was ER-, now I'm ER+!
 

Kristin,

I'm so happy for you! That's wonderful.

Thanks for the cautionary tale.

Re: I was ER-, now I'm ER+!
 

I am so happy for you and your beautiful family!!!!!! Gods blessings to all of you!!!!! I will be praying for you and your family!

Re: I was ER-, now I'm ER+!
 

Glad to hear the good news, you have a good Dr. not to many will question test results without us asking. Hope the new treatment works well.
Suzanne

Re: I was ER-, now I'm ER+!
 

Great news and yet again reinforces the need for retesting rather than assuming the receptors stay the same!

Ellie

Re: I was ER-, now I'm ER+!
 

Hello! And you have a great story! Hoping NED is in sight for you now.

You have made a great case for "onc shopping." If anyone feels that they are not face to face with a doctor who is showing a quizzical side in your first interview - try another.

This is also a case for finding and staying with a BREAST specialist, rather than a general oncologist. Once we have the diagnosis of HER2 positive, that THOUGHTFUL doctor is the one who can save our life.

Hi from Adriana
 

Hi Kristin,

Welcome aboard! You have come to the right place, glad you joined this site.

Have you been treated with Navelbine?

It was an effective weapon for me. Please read my info., there are a lot of women like you and yes! there is hope for us.

Love,

Adriana

Re: I was ER-, now I'm ER+!
 

Ellie,
What's extra interesting about this is that it isn't about an evolution in status..it's a re-evaluation.