Can HER+ status change from initial to final path report?

[Tara]

I had a lumpectomy-it was confirmed that I had bc. Anyway, the initial path report stated that I was ER neg, node neg and HER+. I had a bil. mast. I was told today that my final path report from the mast has me as HER-. Is it common for the HER status to go from positive to negative? I know each time the results were read by 2 different patholoigists. The lumpectomy was done on 11-02-05 and the mast. was done 11-16-05. The lumpectomy path report stated that Her 2 neu protein overexpresion 3+ positive by immunohistochemical study. Should I be getting other opinions before I start a treatment plan? I am really hacked off at my oncologist at this point. I had an appt with him on Monday and we talked about me being Her+. Since I am node negative he was not sure he wanted to give me herceptin due to the heart failure risk. I called my onocologist's office yesterday and spoke to the nurse to let her know that I decided to do herceptin as part of my treatment plan. She informed me that my doctor told her that I was not Her+. I told her that I was looking at a path report that stated I was. She was to get back to me and never did. I was suppose to go in for my first round of chemo at 9am today. I called them at 8:30am, got voicemail and told them I needed some confirmation of what type of cancer I had before I was going to let them do any type of treatment on me. I did not go in at 9am. At 10:30am, my doctor calls me and he sounded hacked off. He could not really explain to me why the HER status had changed or if this was a common thing.This just does not make any sense to me at all. I am feeling really confused and not sure what my next step needs to be? Any advice would be appreciated. I know I want to treat this as aggresively as I can. This is my second time around with breast cancer. I was first dx'd back in 1999 at age 25. I want this to be my very last time in cancer treatment!!

[Tara]

I wanted to confirm that the final report from my lump had me as HER+. The final report from the mast had me as HER-. I wanted to clear that up-it was sort of confusing from my first post. Thanks.

Hi Tara,

I don't know if your status can change, but it doesn't seem likely. I would ask for a FISH test to determine your HER2 status. I'm HER2- and that had an influence on the type of chemo I received. We went for more aggressive because Herceptin isn't a solution for me.

Don't let anybody rush you into a decision. Get all your facts before you proceed.

Lorna

[Becky]

Basically, at least initially, your Her 2 status does not change. The results of the test may change. Sometimes if your Her 2 is +1 or +2, then a Fish test is ordered and that might influence the interpretation of the results.


However, +3 is +3 and is clearly overexpressed. I agree with the guest and Tara who said you absolutely need to know your pathology in order for your oncologist to accurately determine if Herceptin and/or a hormonal is in your treatment plan future.

You could also call the pathology department and ask why the results changed. For example, my tumor was Her 2 +3 but I also had an independent DCIS. They tested it for ER/PR (of which its status was totally different than the tumor) but did not have enough sample to test if it was also Her 2. In my case, it did not matter as the tumor clearly was (and the tumor was also ER + but PR -) so a hormonal was in my future regardless.

However, if my tumor was negative for hormones all around and the DCIS was not tested for ER/PR status, I would never get a hormonal when I clearly get hormone positive cancers as well.

Find out. It's your right.

Best regards

Becky

[Michelle]

Tara,
I had the exact same thing happen to me. The second report stated I was her2-, the first positive. I INSISTED to have a third party redo my labs. Im very glad I did. After completeing 4 AC's, I then was put on taxol and herceptin. My onc. was only going to have me do the AC's as I too was node negative. We are our own best advocates-let your onc. know you need the piece of mind, and insist on the fish test. After all , in your situation he would undoubtley feel the same way. Sometimes we have to be a bit pushy(but polite) to get what makes us feel the most comfortable with our treatment.
Best of luck to you-
Michelle

[al from Canada]

Dear Ladies,
I listened to Dr. Sleaman address this today and he stated that it is not unusual to get IHC 3+ and FISH (-), as they really measure different things, where one uses staining and the other counts duplicate copies something like a xerox machine. There is also a well accepted level of inaccuracy (around 15%) of false positives and negatives. He also indicated that NONE of the IHC3+, FISH (-) patients resonded to herceptin so clearly, FISH is the only way to go. There is also minor changes in FISH values over time however I think the trend during metastatic disease is up-regulation of HER2.

From another post earlier today:
Cancer has proven to be a VERY sneaky opponent with numerous pathways to plug into when assualted. IE, cross-talk between ER and HER2 may upgrulate HER2 if the cancer is being killed by ER therapy. Likewise, if you are HER2+ and ER+ and on herceptin, you may find that ER become up-regulated. The delimma that I think many HER2 - MBC patients face is is what is the HER2 status of the mets and how do we test for it, while the least invasive method is fine-needle asperation.

The readers digest version.....if you develop MBC, don't make the assumption that HER2 status is the same as the primary tumor,,,that one could cost you dearly.

Regards,
Al

[StephN]

Tara -
There is one question that needs clarifying before you go further.
Did the Mast path report have you Her2 - by FISH or IHC? If you have two different results from two different tests, then you may want to have it run again.
Also, were both analyses done by the SAME lab??

Seems to me that your med onc would have addressed these questions before getting "hacked off" at YOU. Sometimes they are not TOO thorough and if there IS a conflict, he needs to take a moment and get a difinitive answer.

You may want to get a second opinion if things don't turn around for you very soon.

This thing is never easy, but you are right to want to get off to the right start with your next phase of treatment! Remember - when the going gets tough, the tough get going!! Worked for me ...

[Jane]

Tara,

Here's my two cents worth: I'd find another oncologist. Seriously. If he couldn't answer your questions, he should have offered to make some calls so that he could. If he was angry about you not showing up for your first appointment, he showed amazing insensitivity. His lack of concern about a possible incorrect diagnosis is incredible. I guess I figure if he'd overlook this very basic issue (HER + or not), then what else will he gloss over as you go through treatment?

I'm sorry you've experienced such confusion in diagnosis. It's hard enough when all the facts present themselves clearly.

Jane
(dx March 2005, HER+, 6/15 nodes, bilateral mastectomy, 47 years old)