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Friday, November 06, 2009 Laurie asks

Q: I would like more insight on hormone receptor negative.

I have Stage IIa IDC and I am hormone receptor negative. I want to know more about what this means. I know as part of my final treatment, I am not a candidate for Tamoixfen, but will have a series of shots instead. My understanding is that I am at higher risk to get cancer later in life and not necessarily in the breast, but anywhere. This is disturbing to me. I would like to know more, please.

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Answers (1)
11/ 6/09 10:15am

Hi Laurie - are you also HER2-neu negative? Because if so, you'd be classified triple negative, which we'll be posting a thorough explanation of next Thursday (so stay tuned). As far as I understand it, triple negative means you're at greater risk than women with hormone-receptive cancer during the first three years after diagnosis, but not higher risk after that. Also, chemo actually can be quite effective for you - often more effective than it is for women with hormone-receptive cancer. For lots of good information (IF you're triple negative), take a look at the Triple Negative Breast Cancer foundation Web site. Good luck - PJH

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12/29/09 2:44pm

My oncologist said that my HER2 test came back inconclusive or undetermined, so they don't know.  Obviously this doesn't rest easy with me.  What steps can I take to find out?  Can you recommend anything?

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12/29/09 11:13pm

Laurie, there are two types of tests you can take to determine HER2 receptivity. Ask your oncologist if further testing would determine for sure your status. If s/he can then conclusively say you're triple negative, then you need to go at this with chemo. If you haven't already, please read our triple negative FAQS for more information about your options. Good luck - PJH

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12/30/09 8:38am

I am undergoing chemo, just finished 4 rounds of AC and will be starting Taxotere next month.  Thanks for the input!  I'll push further to find out.

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12/30/09 8:54am

OK - I believe that's the normal chemo they'd give for triple negative, anyway, so you're heading in the right direction if it does turn our you're HER2-negative. And do pursue the diagnosis - I'm betting an "uncertain" will be classified as negative, but you want to make sure they've done what they can to make a solid determination. Take care, Laurie - PJH

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2/26/10 10:41am

I pushed my Onc and he had the "FISH" test run a third time. It came back negative, which makes me a triple negative.  Not the result I was hoping for.  Only one more chemo and I'm done.  I have checked out the website but was wondering if you had any advice on follow-up care.  Should I demand a CAT Scan once a year for the next three years? 

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2/26/10 11:33am

Laurie, please don't "dmand" anything - I've found that docs are often really put off by patients demanding rather than requesting. I'd discuss with your oncologist what the plan is, going forward. S/he probably already has the protocol in place, which might include scans, MRIs, bloodwork - I don't know what it would be, but I'm sure there's a standard of care that will be followed. If you're uncomfortable with the plan, discuss your questions with your doctor. If still uncomfortable, ask for a referral for a second opinion, OK? Good luck - PJH

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6/29/10 10:58am

PJH, you've been a huge help in giving me understanding. I wanted to let you know that I finished radiation and I am done with my treatment. I now consider myself a survivor! My radiation oncologist answered a lot of questions for me, but there is something I wanted to run by you. Technically, I am triple negative, but since my lymph nodes were clear, my RO said that my cancer would likely not show up anywhere else since that's the only way cancer can travel or spread to other organs. Do you agree?

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6/29/10 11:42am

Laurie, glad we could be of help through this challenging process. Technically, cancer cells would have to pass through your lymph nodes in order to move to other places in your body. But sometimes so few make it through - maybe even just a single cell - that the pathology doesn't see them. Even when lymph nodes are negative, there's still a possibility the cancer will spread. Surely a MUCH, MUCH lower chance, but still there... Be happy for your negative nodes, and go forward  believing you're going to be just fine, OK? Best of luck to you, sister survivor! PJH

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7/21/10 10:29pm

Hi PJH,

You've been so helpful! Thank you! I have one more question for you. I'm 42. I started chemo last August and my last period was November. I've been having hot flashes all year. About when can I expect my period to resume? My radiation oncologist told me some women never have them again. I feel I'm young to not have one and it's the last thing holding up my return to normalcy. Any insight would be appreciated!  THANKS!

Laurie

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7/22/10 6:05am

Laurie, you're in the "in between" age group where your periods might not resume; your doctor is right. If it's going to come back, there's no predicting when... I'd suggest you request a blood test that will show if you're truly menopausal, or if it's possible your period is going to resume; it's a common test given to many women who are in peri-menopause.

 

Even if your period doesn't come back, you'll still be normal - normal for the new you! Understand, you've been through a life-changing experience, and some things might never be the same. Embrace the "new normal" - you're alive, and the rest of your life can be even better than the years you've lived previously. Take stock, see what you want to do, and go for it. Good luck - PJH

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