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Tuesday, February 09, 2010 Linda, Community Member, asks

Q: HER2 Test: "Equivocal" results: Chemo or Not?

I have IDC and it is stage 1, grade 1. Her2 test 

is "Equivocal". 

I now am having a FISH test. If it comes back negative...I am still worried and wonder if I should take chemo. I have 4 siblings who have all been diagnosed with cancer in the past 6 years (various types...not breast cancer). Thank you.

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Answers (1)
PJ Hamel, Health Guide
2/10/10 5:06am

Hi Linda - First of all, your siblings with cancer don't raise your chances of having breast cancer - so far as researchers know at this point. Please ask your doctor about the Oncotype-DX test; it will tell you how much chemo would help you, should you choose to take it. If your HER2 is negative and Oncotype score low, I'd say you could resposibly choose to avoid chemo. Also, please discuss this with your oncologist. S/he will be able to show you statistics regarding recurrence that can help you make this decision.

 

Finally, don't decide to do chemo "just as a precautionary thing." If the tests say you don't need it; your doctor says you don't need it; and you're not a major worrier, then I'd avoid it. Chemo can have long-lasting side effects; I'm 8 years past chemo, and still feeling it. It's powerful stuff (for a reason), and affects all parts of your body, not just the cancer.

 

Best of luck- PJH

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Linda, Community Member
2/10/10 10:58am

Hi and thank you so much for your response.  I honestly thought that the "off beat" cancers of my siblings (and I didn't mention that my 32 year old son was recently diagnosed with Adult Onset Stills Disease) added up to some type of genetic error that somehow was created when my parents came together.   I notice on my pathology report it states that my tumor is "strongly e-cadherin positive.  Would this have any influence on the decision to take chemo or not?  I honestly do not want to take chemo but if the FISH test comes back positive, I certainly will.  Is the ONC test required before the chemo formula is decided upon?  Thank you.

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PJ Hamel, Health Guide
2/10/10 12:22pm

Ask your oncologist about e-cadherin, but I believe it's associated with more aggressive cancers. I think you have a good plan - definitely do chemo if you're HER2+. consider it strongly, given the e-cadherin+ (though again, ask your oncologist); and ask for the Oncotype test. I don't believe chemo cocktail specifics are necessary prior to the test - it's a good all-purpose indicator of whether or not chemo will do you much good. Take care- PJH

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Linda, Community Member
2/25/10 4:22pm

Hi.  I've asked about the Oncotype test but it isn't done routinely in Canada.  It is quite expensive (about $4,000) but my husband and I have decided to have it done anyway.  I've let the oncologist know and someone will be contacting me about the process.

I have started tamoxifen but have not yet started radiation.  My surgery (January 8th) has healed well and on March the 8th I have having a CT scan and some type of meeting with the radiologist.  I believe they will give me tatoos for where the radiation should go. 

If my ONC test results come back "high"...should we go ahead and have radiation first and then chemo...or can I have them both at the same time?  I am 58 years old, not in too bad health (not great either) and so am worried about the long term effects of chemo, should my ONC test be high.  

If you were me...would you be pushing for the ONC test or leave sleeping dogs lie??  I have no idea what to do sometimes...it seems overwhelming.  Basically, I just want to live long enough to enjoy retirement (which I can do after 4 more years of work) and dance at my grandchildren's weddings... thanks.

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PJ Hamel, Health Guide
2/25/10 6:58pm

Two questions, Linda: Did your HER2 come back positive or negative, finally? And did you have any lymph node involvement?

 

If no lymph node involvement, and HER2 comes back negative, personally I wouldn't bother with the Oncotype test. If HER2 positive, and/or lymph node inovlvement, then they may insist you have chemo, as HER2 would signal a more aggressive cancer (along with the e-cadherin part); and lymph node involvement means it's already spread a bit. So - my advice - get the results of the HER2 test settled, and you may not need to bother with that expensive Oncotype.

 

IF you had chemo, you'd probably have it first, followed by radiation. You don't do them concurrently, and chemo usually comes first, as it's the big knockout punch, while radiation is the mop-up action.

 

Best of luck to you - PJH

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Linda, Community Member
2/25/10 7:05pm

My initial result was equivocal for the Her2 test and then I had the FISH test and it came back negative with a score of 1.4

I am 58...low grade tumor, stage 1 grade 1, PR and ER positive (100% positive for both).  Initially or when I had the biobsy some of my tumor "resembled" lobular (that is why they apparently mentioned the e-cadherin).  Upon inspection, after the surgery, they found most of the tumor was IDC with a scant 15% in situ type.  I'm now taking tamoxifen every day and waiting for the rads...

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Linda, Community Member
2/25/10 7:06pm

I forgot to add the response about the lymph glands.  They removed 2 sentinal nodes and both were negative.

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PJ Hamel, Health Guide
2/25/10 7:42pm

OK, Linda, my advice? Do the radiation and forget the Oncotype and the chemo. I did chemo, and it does have long-lasting side effects. I believe with your diagnosis your 5-year survival rate is very high - ask your doctor, but I'm guessing it's up around 97%. That'll at least get you into retirement! Remember, I have no medical training - I'm simply a woman who's survived breast cancer. But I'm about your age (57), and if it were me - I absolutely wouldn't do chemo. Best of luck to you, and may you dance at your GRANDCHILDREN'S weddings! LaughingPJH

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Linda, Community Member
2/25/10 9:51pm

Hi PJH.  Yes, my projected survival rate is close to 96 or 97%.  I can't recall which.  I was thinking it would drop to 50% if my Onco test was high.  I guess that isn't the case.

I am so glad you've survived breast cancer.  It gives everyone a lot of hope.  Thank you for your input into my situation.  Take good care of yourself.

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PJ Hamel, Health Guide
2/25/10 10:09pm

Oh, no... the Oncotype wouldn't have anything to do with your general survival rate. It only tells you if chemo is going to help improve the survival rate you already have - and since yours is so high anyway, no need for chemo - whew! I'm happy for you. Thanks for chatting- PJH

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By Linda, Community Member— Last Modified: 12/27/10, First Published: 02/09/10