RECEPTOR STATUS CHANGED TO TN

CEBsMom · July 2010

Hi --I've never started a new post but did not see anything already addressing this but I am pretty freaked out right now so I could have missed it.

I got a copy of my OncoType Dx and what I was originally told was ER+ BC came back a TN BC based on the the OncoType Test. Has anyone had their receptor status change like that????

I've started chemo--Im in the Jun 2010 group. AM I ON THE WRONG CHEMO???? I am scheduled for my next round on Monday!!!!

They mailed me the test results--The nurse called but I wasn't in my office so did not get to return the call until after she had left for the day.

Also, my Onco Type score came back 50 so is all that negated since this test is for ER+?

I'm just really confused and very, very scared!!!

gcpommom · July 2010

Hi CEBsmom. I was told I was slightly ER pos at first, but they then said they don't consider anything under 10% positive as a positive reading, so they changed me to TN. I was 1% ER pos, so I guess that doesn't count.

Sorry, I don't know about the oncotype since I never had that test. I hope someone comes along to answer your questions.

CEBsMom · July 2010

gcpommom--

Did you take chemo--what kind did you take? I just registered at MD Anderson. I'm about five hours from Houston and have friends there, so I thought I would go for a second opinion since it's such a drastic change. My first path report showed me 72% ER positive, and my second was 3.2% positive--which as you said is negative.

I so appreciate you responding to my initial question!! I was in a panic!!

Luah · July 2010

CEBsMom: I'm sure it was distressing to get that change in your status, but there are several women on these boards that that has happened to. Triple negative is known as the scary type of BC, but it has its positives too. For one thing, it is very sensitive to chemo. And even though we can't take hormone therapy, we can lower our risk of recurrence - more than hormone positive sisters - through a low-fat diet and exercise. Your node status and relatively small tumour are good prognosticators.

As for chemo, there is a lot of overlap among hormone positive and negative cancers. What are you on? There is a thread on the TN board somewhere about what we are all on - many take an anthracycline, some not. Taxanes (like taxol and taxotere) have been shown effective in trip negs especially.

gcpommom · July 2010

Wow, that's a really big difference in %...going to MD Anderson for a second opinion is a good idea with that large of a difference, mine was also checked at 2 different hospitals.

I had 4 A/C dose dense every 2 weeks, and Taxol weekly for 9 weeks (didn't make it to 12 due to neuropathy).

I wish you all the best : )

CEBsMom · July 2010

L & gc--Taking Taxotere and Cytoxen x 6, one treatment every three weeks. I did take a breath and looked at the date the onc received the tests, which was before I started chemo--I'd like to think he looked at it before making a final decision on the chemo..... My concern on what I've read is alot of people are getting dose dense--I don't think I'm getting dose dense... Not sure of the implications. Also thinking very seriously about a bil MX after treatment is done.....

I go for my second round of chemo today!

I truly thank you for your responses and supportive comments!!

Love and Blessings to you both!!

Meilnda

Luah · July 2010

CEBsMom: I don't think TC is usually given dose dense. Look down the topics on this board... there are 2 back to back about chemo and triple negative BC. You will find quite a few ladies did the chemo you're doing - for example, sugar77... you may want to look her up. Hope you're managing it well, with few SEs.

PauldingMom · July 2010

Yes, mine was changed to but my chemo. treatment didn't. My mother who went through treatment at the same time as me was ER positive and had the same chemo. as I did. TC 4 doses So I'm thiinking you are right on tract, but what an excellent question.

Nbb1032 · July 2010

I am really scared now reading these posts. I am ER+ only 15% and my oncologist said anything over 5% is considered positive. This is according to the original core biopsy. I am having a bi lat mast on August 3rd. I was unaware that the pathology report could come back differently than the first! I also will be doing an oncotype DX to determine if I should have chemo.

How often does this happen where the diagnosis comes out differently?

Luah · July 2010

Honestly, Nbb1032, I don't think it happens very often, but maybe someone else has an actual stat for you.

Remember, someone posted on the topic, so it is drawing out a lot of similar experieces. That doesn't mean it's common, only that it happens.

(Interestingly, at my cancer centre - and I believe at others in Canada - they don't analyze your hormonal status until after they have the surgical sample.)

CEBsMom · July 2010

Yes, Nbb--don't worry just be aware and know your results. I think that's the key to us getting thru this. I did ask my doc about it--he said he uses the Onco type to confirm HER2 status but not to confirm ER/PR status. Didn't really understand that, I slept on it and called back to today to ask them to do another Marker status (the first test) on the actual tumor--the first was on the biopsy. In the mean time, I am starting my paper work for a second opinion at MD Anderson in Houston. I didn't really think I needed that since ER+ is such an managble, treatable C but as we all know, things change DAILY!

I truely do appreciate all of your responses--it helps me to not feel so alone in this--despite awesome family and friend support!

Hope and pray you all get a good nights sleep and wake w/ lots of energy!!!

CEBsMom · July 2010

I still have not heard back from my onc on doing a second receptor test on the actual tumor. I did speak to my ob/gyn which is where this all started. He was quite suprised by the huge change in ER status and agreed that a second opinion would be a good idea. I just needed some confirmation that I wasn't way wigged out for nothing. Anyway, quite a daunting task to get to MD Anderson--they have their ducks in a row, so I will get there. Have calmed down a good bit from my original post and have made it thru my second round of TC on Monday.

I pray that you all sleep well and wake rested! Blessings on you all!!

Sugar77 · July 2010

CEBsMom - hi, I did the same chemo as you...TC (Taxotere/Cytoxan) every three weeks. I did four treatments in total then radiation as I had a lumpectomy. Good luck with your treatment

CEBsMom · August 2010

Hi All!

Finally got some feedback from my trip to MD Anderson in Houston. The pathologist did a receptor status on the tumor and found it to be ER -. However, he said because at least some of the tumor, the first biopsy, was ER+ then the CA should be treated as ER +--what that means for me is Arimidix after XRT. Honestly, that sounds like such hogwash but what can you do.... It's frustrating and confusing. I'm just finished round 4 of 6 CT. I've got a cold from H$!!, but at least no fever. Bones ache from chemo but mostly controlled w/ Advil. I'll stop whining now....

Wish you all little or no SEs today!!!

Love and prayers!!

Melinda

RECEPTOR STATUS CHANGED TO TN

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