Core Needle HER2+, but Lumpectomy HER- ???

VLH,

I know you have many objections to chemo related to your pre-existing health conditions, but I just wanted to say that few patients at my infusion center get mouth sores. (You can suck on ice chips to avoid that.) More importantly, gracie is right that doctors and hospitals will work with you if do choose to undergo treatment. Your pre-existing health conditions are one thing, but money shouldn't be the problem.

I did AC-THP and didn't get any mouth sores either. I made sure I rinsed my mouth real good every time I ate something. If you are found to be Her2+, Genentech has a co-pay program. I believe the most I paid per Herceptin infusion was $100. That would be a significant savings for you.

Congrats on your clean margins! I had to have a seroma drained, too. It's hard to know what to do to prevent an armpit seroma from filling again. My seroma was in my breast; I just wore a tight sports bra, and stuffed it with some socks to increase its tightness against my chest.

Yes, maybe your MO will have more information about the risks/benefits of chemo for you if you are indeed triple negative. TN has a bad reputation for being aggressive and hard to treat, but many TN women on these boards are doing fine. I've heard that if you're going to recur with TN, it usually happens in the first three years after diagnosis. Then, the chances of recurrence seem to go down a bit. But, I'm no MO and don't know the rates of recurrence, given the treatment options.

Hi VLH:

Good news on the margins! I hope you are more comfortable after the seroma was drained. I felt immediate relief when mine was drained, and luckily, it didn't come back. I hope the same for you.

I think your surgeon is putting the cart before the horse, and what you need to know is not in her area of expertise as you noted. Whether there is triple-negative and/or ER-PR-HER2+ disease present may affect the drug regimens recommended. The people with the appropriate expertise on your team need to figure out your diagnosis (definitively, not "I think") and to present you with specific treatment options, and with information regarding the risk / benefit of those options, so you can make an informed decision. I don't think it is reasonable to ask a patient to commit to an unspecified treatment plan ("chemo"), until they are advised specifically what drugs that treatment plan may include, their side-effect profiles, and can weigh the risk / benefit associated with any recommended regimen(s). (A little venting on your behalf.)

Please do meet with the MO, because systemic therapies, and associated risk / benefit of same, are in her area of expertise.

==> Request that your MO discuss your HER2 test results from biopsy and surgery with the pathologist. Ask her to request the pathologist review all results again to confirm or trouble-shoot, and so the MO and pathologist can advise you whether in light of ASCO/CAP guidelines, further testing and/or outside pathology review are recommended or not.

For your information only, this section from the 2013 ASCO/CAP guideline for HER2 testing does not strictly apply to what has occurred in your case, but may provide useful background:

http://jco.ascopubs.org/content/31/31/3997.full.pdf

"In summary, if available, perform the first test in the core biopsy specimen in a patient with newly diagnosed breast cancer. If the test result is clearly positive or clearly negative as defined in Table 1, no retesting is needed. If the test is negative and there is apparent histopathologic discordance (Table 2), or if specimen handling has not been in accordance with guideline recommendations, a section of the tumor from the excisional specimen should be tested. If this result [from the excisional specimen] is positive, no further testing is needed. However, if the test [on the excisional specimen] is negative and there remains significant clinical concern about the result after consultation between the pathologist and the medical oncologist, it may be appropriate to repeat the test in a different block from the patient's tumor. If all three tests are negative, no additional testing is recommended."

==> In light of this, please have your MO ask the pathologist: If your initial test result on biopsy was clearly positive, what was the reason for retesting the surgical samples? For example, was there some concern about the test done on biopsy (e.g., specimen handling, other?) If so, what are the implications of that regarding my status?

With two test results in hand that you understand not to be in agreement, I am not sure but by my layperson's reading, the guideline would seem to suggest further testing may be in order. (If so, they should expedite it.)

There is an unexpected finding, and it calls for a consultation between your medical oncologist and the pathologist, a closer review of your results by the pathologist, and a discussion of appropriate next steps.

Sending you good vibes for making progress.

BarredOwl

Hi VLH:

If you wish, to possibly get the ball rolling on review of your HER2 results, you may wish to email the MO something like this:

One thing I would like to discuss with you in my upcoming appointment is the differing HER2 status information obtained from my biopsy (HER2-positive) versus surgical tissue (HER2-negative). If your schedule permits, I would appreciate it if you could discuss these results with the pathologist, and request the pathologist review all results again to confirm or possibly begin to trouble-shoot them before my appointment on Aug. 16.

Is it possible that both test results accurate and correct, or is there reason to question one? I am wondering if my initial biopsy test result was clearly positive, then what was the reason for retesting the surgical samples? Was there a concern about the test done on biopsy (e.g., the type of commercial test used; specimen handling; other)? If so, what are the implications?

I would also like to know in light of HER2 testing guidelines, whether you and the pathologist would recommend repeat testing (of the same or different area of the surgical sample, either using the same or a different method) and/or outside pathology review in my case.

Many thanks for your assistance.

Even if she doesn't get a chance to connect with the pathologist ahead of time, it would be quite useful to send such questions in advance of your appointment, because it alerts her to this more specialized issue, and may permit her to review your results carefully, review guidelines and the scientific literature as needed, and check into appropriate next steps.

BarredOwl