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Validity of HE 4 Test

My sister says she had a negative HE 4 test just a few months ago for ovarian cancer.  Anyone familiar with this?

She has just now been diagnosed with stage 4 cancer.
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Avatar universal
I'm sorry you're in so much pain -- and sorry that you sister has had a recurrence.  

I hope you'll take good care of yourself through all this.  You don't have to have a genetic test to know that you are at some risk for a gynecological cancer due to your family history.  Please be sure you see your doctor regularly and have the appropriate tests -- especially transvaginal ultrasound or, if you have symptoms, a CT scan.  

The CA125 is apparently not a good marker for everyone who has had ovarian cancer.  And it's even less accurate before one is diagnosed with ovca.  I presume that the HE4 is used to try to overcome the CA125's limitations.  

Your sister's ovca was originally caught at an early stage, and she was probably told she was cured.  (That's my status, too.)  Unfortunately, if it comes back it will be re-classified as late stage because it has to come back in locations like the liver, lungs, lymph nodes, etc., that are associated with late stage.  I'm not sure there's any such thing as catching it earlier "the second time around."  She played the odds and it came back.  I keep going to the doctor, who says that the odds are very, very low but not zero.  She probably worried less than I do, though I've made a point of living well and enjoying my life since my chemo was completed.  

My best to both of you.    
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Avatar universal
You bring up a really good point.  The cancer doesn't necessarily have to be ovarian that has metastisized...it could be that her lowered immune system opened the door for other cancers and they are blaming the ovarian cancer for all of it.

That could be why her CA125 was only slightly elevated and the HE4 was negative.

It has been so difficult to get information because she has not wanted us to have it.  Perhaps as this evolves we will be able to obtain more detailed information from her doctors.  I would really like to know because it is an important issue.

We have had so much cancer in my family (my mother had uterine first and then breast cancer) and I HATE IT!!!!!

I want so desperately for new, dependable tests...
Helpful - 0
340734 tn?1256586262
Dear Rose,

From what I've read on the Quest Diagnostic website, the HE 4 test is used in conjunction with the CA 125.   My understanding is; when the CA 125 level reads a normal level and ovarian cancer is still evident, the HE 4 is supposedly an additional test with more accuracy.   It is only used for women when the CA 125 is NOT showing a level above normal.  However, from what you've posted, I'm not so sure about this in your sister's case.

Is it possible, and please forgive me for saying this; could your sister have other cancers in addition to the OVCA?  Sometimes, doctors may overlook these possiblities and these two blood tests are only used for OVCA.  And sometimes, we don't have the nerve to ask these kind of questions and you did mention your sister's "denial" of it all.  I'm really sorry for even bringing this up, but, I try to rule out every other possiblity.  We all are just trying to survive this terrible illness.

I hope and pray for the best for your entire family.  Angie
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Avatar universal
Hi Rose.

That is a truly awful story. I have a friend who had breast cancer and refuses to take her tamoxifen, even though it has been shown to significantly lower the odds of a recurrence. She told me that she just wants things to be the way they used to be. I told her that after cancer, that is not an option. I am pretty sure she is still not taking her tamoxifen.

I am so different that it is hard for me to understand this mentality. You must be beside yourself with worry and upset.

I hope that your sister's doctors can come up with a treatment plan that is effective.
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Avatar universal
Hi Guys:

This is my sister's story:

Her cancer was found fairly early.  There was no visible evidence that it had spread past the ovary.

She had a huge cyst on her ovary for over a year (and cancer symptoms) and finally had surgery about 18 months AFTER removal was recommended by her doctor.  He found cancer on the underside on a "whim" (just felt that he should look further), where it could have gone undetected for even longer.

She had everything removed inside that was possible to remove to protect her...and then six months of chemo.

After that she refused to follow doctors recommendations for years.

Nothing we said would change her mind.

She finally went to the doctor fairly recently because of back pain.  She probably had the best chance of anyone in the world to really hold this at bay, but had a really bad attitude about it and did not want to have regular checkups....

I'm saying all of this for your sakes and because I love my sister so much, I hope someone can learn from this.  I don't blame her for what she's done, but I wish she could have handled things differently.  They ARE coming up with new things all the time...I'm not even sure if she told me the truth about the HE4 because, to tell you the truth, she's in denial about all of it right now.  She claims that she doesn't have cancer, but I've seen the paperwork and talked to the doctors.

Please, "Let your symptoms do the talking" no matter what...that's my opinion, anyway.  If you have the symptoms, get checked, checked and rechecked...and listen to your doctors, no matter how hard the treatment is, they really do care about you.

I'm still hoping that I can find out more about the HE4...I just can't see how it could have been negative...but again, her CA125 WAS elevated.

My best wishes and love to all of you...you are troopers and doing the right thing...fight the fight!!!!!

Rose

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Avatar universal
I am so sorry to hear about this. What was your sister's original stage? Was it 4?

I hope she is seeing good doctors who can help her. Sometimes it is worth getting a second opinion at a major cancer center like M.D. Anderson or Sloan Kettering, since they can sometimes do things that other hospitals cannot.
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Avatar universal
this has more info

http://ezinearticles.com/?Cancer-of-the-Ovary-and-HE4---A-Promising-Screening-Test&id=891511
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Avatar universal
I am so sorry to hear of your sisters metastasis, I can understand how distraught you and your brother are.

It must be so upsetting to know that if she had the follow up appointments, it may have been caught so much earlier and before the cancer spread so extensively.

I will ask my oncologist about the HE4 blood test, he's never mentioned it to me and I'm starting my 3rd chemo as soon as I recover from next months hernia surgery.

I wish your sister well,
Jane
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Avatar universal
Thanks for your responses.  My sister had surgery and chemo for ovarian cancer about 12 years ago.  This is a recurrence.  

She is having full body radiation five days a week...my brother and I are pretty distraught..

It was such a shock to hear this news after her HE4 test coming back negative.  We've been told that the cancer is in her lungs and brain also.  She also has a mass in her back.

I have to say that she has not wanted to have regular follow-ups over the years....she has actually avoided them..so, I don't want to discourage those of you who have been doing what you are supposed to do..
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Avatar universal
I am sorry about your sister. That really stinks.

HE 4 is relatively new. From my googling I see that it is for monitoring recurrence, not diagnosing. That sounds similar to CA-125, which is not a useful diagnostic tool, but for many women (most women?) with ovarian cancer is useful for monitoring after treatment.
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Avatar universal
Hi,
I never heard of that test, I'm also stage 4 and I hope someone on the forum can answer your question.

Is your sister on chemo now, and if yes, what chemo drug is she having?

I wish her good health.
Jane
Helpful - 0
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