HER2 serum test...
 

Does anyone know why so many places *aren't* using the HER2 serum test? When I went to my 2nd opinion onc I asked about it and they said they don't use it. Their a pretty large cancer center so I was surprised. Actually the onc up there looked at me like she hadn't heard of it? Haven't most oncologist been told about this test, or what's the deal?

Chelee

I don't understand what this test is. A blood test? I had the HER2 done as part of a biopsy...is there more?

I wondered the same thing Jan - What I read was that it wasn't "proven" in many Onc's opinions and they were waiting for more. Same goes for the Insurance companies. My Onc acted like he had never heard of it either.

I ask for it, and my insurance pays for it. I suppose some oncologists feel there is not sufficient evidence yet to prove its value. Also, some oncologists don't like doing markers because of the reaction of the patient when they go up--fear mainly. They can go up for reasons not associated with cancer, although I still do mine from time to time.

It's a blood test, much like other markers, only this one is designed to determine likelihood of activity in HER2+ tumors.

Thank you. I will ask about it. I have so much to learn! Appreciate all the hints...

Kimberly, You must be right as that's the only thing that makes sense. But it seems there is more then enough data to support the use of the her2 serum test at this point IMHO. :) I noticed even Chrisy said in the clinical trial she is in they are using it. That sounds pretty positive. I think its another GOOD tool that should be used on a regular basis for us her2 gals.

I think I am going to take some literature in to my onc and push for this and see how far I get with it. lol With my onc...probably not far but its worth a shot. I would just like to see IF they even really know about it after I hand them information on it. I get this *blank* stare every time I bring it up to any onc? (Strange) Its like they don't want to admit they have no clue what I'm talking about?

Chelee

Chelee,
What is really interesting tho, is that the Dr. running the trial does not use it (at least she poo poo'd it when I asked about it about a year ago). Just on the trial! But then she is a real data hound, so using it to generate data to determine its usefulness makes sense even if she considers is not ready for prime time yet.

Can anyone point me to medical reviews or trials that prove that it works.
Also a succinct medical review of what it does woulc be helpful.
then I could show these to my onc here in France and see what he thinks.
thanks in advance
sarah
ps you can post it or send me a PM

I to am confused about the Her2 serum test. Joe posted a spot for a very good article. It is http//breast-cancer-research.com. Once on the site go under articles. The title is Her-2/neu diagnostics in breast cancer. It was published 4 June 2007.

I just saw my onc last wk for my first mammograms since being diagnosed last year. Thankfully all came back fine. At that point I ask about the Her2 serum test. Onc said they don't do them. I would feel better having scans to be sure all is well. Nothing else is schedule now unless symptoms appear.

Could someone who gets the Her2 serum test regularly explain it to us. Is it just a blood test? How often do you get it? What does the test results show? Is the expense a problem for some insurance companies? Perhaps the test is not done when there is no reoccurence. But the article says it can indicate reoccurance 2 to 9 months before it is detected by clinical diagnoses.

Thanks in advance for you knowledge!
Donna

two separate questions being discussed
 

There are actually two discussions going on here.

1. After primary diagnosis and treatment, what surveilance for recurrence is needed, and why?

The answer to that is that NCCN and other guidelines do not recommend any kind of scans or tumor marker monitoring after primary diagnosis. The reason for this is that studies have shown that women who have their recurrence detected this way (as opposed to waiting for symptoms to occur) do not have a better outcome. The do not live longer nor do they have a better quality of life. In addition there is the problem of false positive results which raises everyone's anxiety for no reason. When recurrence happens, the cancer either does or does not respond to any given treatment, regardless of whether it's detected by scans, markers, or symptoms. There is no such thing as finding a distant recurrence "early" (except brain mets which are rarely the first site of recurrence). The HER2 serum test is a marker, thus not recommended, has no benefit to women after primary treatment, and is a waste of health care dollars when used to monitor women after primary diagnosis.

For those with advanced (metastatic) disease, it's a whole different story. Markers, including the HER2 serum test, may be useful to monitor response to treatment and perhaps to track status during periods of NED.

2. Second question - is the HER2 serum test itself a good (reliable) test to use when doing tumor markers? 'Sounds to me like it's one more piece of information to add to the mix but perhaps not a stand-alone one. Although some women, over time, may find that it's an accurate indicator for them, just as the other tumor markers are for some women. (some women have widespread disease and no elevation of the currently-used tumor markers - each cancer is different). Plus it may have some use in making decisions about the use of Herceptin, in advanced disease.

This information about not doing scans and markers after primary disease is so hard for some to accept. "But it makes me feel better to have a negative marker or scan", women will say. I say that a negative scan or marker today does not carry a warranty. You may have a negative scan today and a recurrence begins tomorrow. After breast cancer, there is some risk of recurrence, varying for each of us, but always there. That is a fact. Our best option is to accept that fact and learn to live with it. It's perfectly possible to do that, and it may enrich our lives to do so.

I don't say this to alarm anyone but to emphasize how useless these surveilances are. And to be blunt, imho - it is selfish and wasteful to demand an expensive test that is of no value, just because you think it gives you peace of mind. We (the global "we") don't have enough money to keep up with the incredible cost of advancing medical technology. We cannot provide the most basic of health care to many humans on this planet. And if we continue to mis-use what is available to us, we drain precious health care dollars, for no purpose. Dollars that could be used to save lives.

I know that this post is blunt and critical, and I know that the people on this list are wonderfully polite and supportive. I do admire this list for its civility. But I feel strongly about this issue of responsible stewardship of our health care resources. And let me emphasize again that I am talking only about surveilance after diagnosis and treatment of PRIMARY breast cancer.

Debbie Laxague

Dear Debbie,

I did not find your post critical or blunt. It was actually very informative, and I appreciate the matter-of-factness in it. I have had my markers checked, three times, and had 3 bone scans (to moniter a spot on my ribs). I have had a few scares now, and after aging about 10 years with each one, and obsessing for hours (heck, DAYS!!) with did I have a reoccurance, or didn't I- I think I am finally reaching a "new era" in my treatment. I am SICK,SICK,SICK, of this absolutely controlling my life. It has become who I am, has engulfed me at times, and I am wasting very precious time worrying over it. In addition, I think that I have allowed my worrying to skew the facts in my head and I have forgotten that I do have a very good chance of beating this. Of course there is the chance that I won't- but how sad I would be if that time came and I had not lived my life to the fullest. I have always said that getting breast cancer can be a blessing- people die every day in automobile accidents and never have the chance to say the things they want to, do the things they love, etc. etc. What a wake up call we've gotten.

I agree that much of the testing is not helpful, that it certainly can increase anxiety and fears, and that it can take away from life a bit. I do think that one has to listen to their body, take very good care, and genuinely put forth the effort to do whats humanly possible to be vigilant and fight. The rest is in God's hands. For me letting go of the control THAT I DON'T HAVE has been the hardest part.

Anyways, just wanted to let you know that I appreciate the time you took to write and explain. I don't know why, but the docs seem to have a very hard time explaining what you just did. :-)

Love, Kelly

P.S.- Don't take this the wrong way, but you have even more "credibility" with me just because you've been there yourself, just like us, and had real reason to worry, and dealt with many of the same issues. So I know you understand. Its harder to listen to from a person who has never actually dealt with cancer.

I just asked my oncologist (again!) about the serum Her2 test and she said (again!) that it is not a useful tool in monitoring post-treatment 'stuff' for early stage breast cancers. It is a whole different story for those with mets. And, to back up what you said, Debbie, she also believes that most scans done to rule out recurrences are unnecessary...for the patient-exposing them to unnecessary radiation etc., and they are not cost effective. I know that it seems contradictory for a doctor to say...'there is really no effective method of picking up an early recurrence...and to wait for symptoms to appear..." when everything I believe tells me that 'early detection is the key'!!!
These discussions are one of the reasons that this board is so important to me. We are all researching, reading, ASKING, these important questions and sharing our knowledge and the wisdom of our respective medical teams. It is this sharing of information and experiences that is so valuable!!!

Thanks Debbie for your comments. My onc follows the national guidelines and for the most part I am comfortable with no tests, no scans, no markers being run. Every once in a while I find myself wondering "what if" (after all, I felt perfectly healthy when I was diagnosed), but then I read a post of an anxiety ridden member waiting for results and realize that this is the best course of action for me. I have total confidence in my onc and feel that sometimes we get carried away with thinking that we know better than the trained professionals. While I think it is crucial to remain informed of our choices and options, I think it is equally important that we put our trust in our health care proffesionals and follow the guidelines put out by respected organizations.

Debbie,
Thank you for responding and explaining things so well (better than my onc ever did). That is what this board is all about, getting others opinions, learning and making responsible choices.

I applaud your stand for responsible stewardship of health care resources.

Hitting the year mark is a big step. I am still trying to put all this into prespective. The treatment is over now except for Herceptin. Like Kelley said it is hard to let go and understand we are not in control. Learning to live with the possiblity of a reoccurence is not easy, we all must deal with that. I have much to be thankful for and I thank God daily.

Can't wait for the day I don't think about cancer once! Its coming.

Donna

Donna,

One more bit to add to the rest. Today was my next-to-last herceptin and the last draw I would have for tumor markers--I've had three this year and this would be the last. I have primary breast cancer with generally higher than average tumor markers: 27-29 is 37; started at 41, went to 45 (then had PET, nine months ago), and then down to 37. Don't know where it is today.

I've had two HER2 serum markers done. First was 16, next was 11.5 (couldn't get enough blood for today's, so I'm taking it as a sign not to do it again).

My oncologist told me he only does the HER2 for two patients, me and another, and prefers not. The other patient's HER2 went up quite a while ago (more than nine months he told me) and they can't find anything, and she's living in constant fear.

He uses the other markers routinely, but emphasized that they're not recommended by oncologists in general, for reasons quoted by Debbie earlier.

I will say, just for myself, that starting down the path of tumor markers was the worse mistake I've made since getting cancer. Now I'm in the position of knowing I have high markers and a good prognosis (4% mortality in ten years by Adjuvant). And the fear of the markers has upper hand.

I agree with Debbie, but just don't have her courage to say 'don't think about this and get on with your life.' I'm trying though. But my recommendation is if you're feeling good with no symptoms, let the markers and scans go. This is one woman's opinion and, admittedly, she's a coward!

When I tell my doctor of stories from here regarding markers and scans, he reminds me, but very politely, that we're a self-selecting group

i see my onc tomorrow and have this on my list of questions for him.

Hi all,
My Onc said that the serum test was of value only in the metastatic setting..Just thought I'd add my 2 cents.
Marcia

Hi Debbie,

I, too, appreciated the "frankness"of your post. I also ditto almost to the letter what Kelly said in response to your e-mail.

Please don't anyone misunderstand me. I, like all the rest of you, want nothing more than to know, beyond a shadow of a doubt that I have no cancer living in me. BUT, I also know that knowing that to be true, beyond a shadow of a doubt is impossible. I've learned that this disease called cancer is sneaky, has no rhyme or reason and is totally different for each person. What we are told one day can be totally different a week later.

Of course, I understand that those diagnosed with mets are in a totally different boat and testing to see how responsive the cancer is to treatment is definitely what needs to be done.

To add to what Kelly said, I, too, am learning to live within this new normal for me. I'm learning to let it go (it's a hard thing) and live the life I've been given to live. Whether my cancer returns or not is not something I can control (I don't believe). We should take care of ourselves, eat right and exercise just because it's good for our overall health. All of us on this board know that doing "all the right things" means nothing as far as cancer prevention or recurrence goes. It happens to people from all walks of life doing "all the right things" and to those who don't. Then there are those who do "all the wrong things" and they get nothing. It doesn't make sense and I am learning to quit trying to figure it out. It makes for a more peaceful way of living for me.

I just needed to weigh in as well to what Debbie and Kelly said because it's how I feel as well.

Hugs to all,

Mary Jo

My oncologist does not do the serum test or markers on me. I have PET/CT scans done every 3 to 4 months to make sure the cancer has not come back. He feels that there would be no reason to do both, he would do them if I wanted but the scans are enough. I am stage IV though and would not have it any other way. I have been NED now for 15 months and want to know immediately if something starts acting up so I can take quick action on it. I have a difference of opinion about catching it early, I had absolutely no symptoms when my mets and original cancer were diagnosed, if I had waited for symptoms my whole lungs may have been eaten up. I have a few small spots on my liver that have never lit up on a PET scan, I think it is beneficiary for us to keep an eye on them, just in case. I read on the John Hopkins question and answer board that if you catch mets when they are very few (two or less) and small you have a better chance of long term survival. To me that just makes sense. So I think there is a difference of opinions here even among Oncologists. If I had never been diagnosed with mets and was HER2+, I would still want some sort of scan done at least yearly because of the agressive nature of HER2. We pay out of my butt for our health insurance and I feel that using it on these scans are not a waste of money, this is life and death situations here. I get more perturbed when someone runs to the doctor every time they get a nose sniffle..sherryg683

There are so many different opinions on this one. I find it difficult to believe that catching mets earlier will not give a person a better out come. (Put the fire out before it burns down the house.) It only makes sense to me. If there are tools out there to catch mets before I start having symptoms I want to use them. I am a stage III'er with 5 positive nodes and I could NOT have radiation so I want to do everything I can to stay on top of this. I've never had to use my health insurance much and we've paid a fortune into it...and now I need it and I don't feel bad for using it.

I don't know how they can say finding mets doesn't have any affect on long term survial? I'll never understand that. The *sooner* I find liver, lung mets, etc...the more options I will have with chances for a better out come. The her2 serum test alerted Kate to a problem and I can't help but believe she will do great now that it was caught early and not *months* or a year later. Early detection equals a better out come IMO. To me this is so much more then having these tests for peace of mind. If I have a spread to my liver I want to know before my liver is covered with nodules verses one..and these scans and even the her2 serum tests can and have proven to be good tools for this. I realize there are false positives and no guarantee from using these tests...but again, they are TOOLS and can be very useful. Why do the insurance companies even agree to authorize these scans and tests if they didn't feel there were any benefits from early detection? We all have to do what we feel is best for us. So many decisions and none of them are easy.

Chelee

Just say yes to the serum her-2 test...
 

I know this is controversial, folks, but we are making this more complex than it need be...

Whether you are stage 1, 2, 3, 4 or somewhere in between...if you HAVE EVER been told and shown evidence that you are her-2 positive in ANY way, you need to monitor the levels of the her-2 protein in your blood. If they stay around 12 or under...hurray for you, but keep in mind this is no GET HOME FREE CARD..you could still have other cancer stuff going on, but at least you know where your serum her-2 is...HOWEVER, if the number consistently starts going up...and usually it will start doing this quickly, unexpectedly, you may feel wonderful...but if the number starts on a climb exponentially, week after week, month after month...take it from a 10-year survivor...who has used the test regularly since July 2003, something is going on somewhere and you don't even have to know where, just get thee to Herceptin Quickly....

As to the expense argument...the test costs about $120 to $150 bucks...this is way cheaper than surgery, more chemo drugs, ablation, radiation, blah, blah, blah...

I have used only herceptin since 1999 and have followed the serum tumor marker since 2003. It can work...

This is science not pulp fiction. If the protein is in your blood, you have her-2 over-expressing somewhere...let's not make this complicated.

Sorry to be so tough on this one, but why be "against" one of the only real tools we have in this horrible fight???

Gina

Gina, As far as I am concerned...your post is right on the money. I know I am ALL for it. Like I keep saying...its another tool they have and it should be used. I think there is more then enough proof that it works. Since I am a stage III'er with 5 of 16 positive nodes and NO radiation I want to be monitered with any, and all good tools they have available. To me there is no excuse not to use it at this point.

Chelee

Again, we're combining two different questions and the answers are not the same for both. It is not complicated at all, as you say. But combining the arguments is making it seem so.

1. Does the Her2 serum test "work" to monitor activity of Her2+ disease? Probably yes.

2. Is there any indication or recommendation to DO the the test (or any tumor marker or scan) after treatment for primary disease? No. Here are the NCCN guidelines on follow-up after primary disease:

Interval history and physical exam every 4-6 mo

for 5 y, then every 12 mo
Mammogram every 12 mo (and 6-12 mo post-RT
if breast conserved) (category 2B)
Women on tamoxifen: annual gynecologic
assessment every 12 mo if uterus present
Women on an aromatase inhibitor or who
experience ovarian failure secondary to
treatment should have monitoring of bone health
Assess and encourage adherence to adjuvant

hormonal therapy.

Sorry, it lost its formatting in the cut/paste. NCCN does not recommend any scanning or tumor marker testing because evidence shows that this is not of any benefit. I know it's counterintuitive to hear that there's no advantage to catching mets before there are symptoms. But that's what research shows. And you can probably think of examples, right on this list, that do support this information:

Think of women with widespread and urgently life-threatening mets who responded to treatment and had long periods of NED. Then there are those with initially small mets whose disease progressed relentlessly. Whether either of those women detected their mets a month or two earlier than symptoms would have arisen (because they were scanned or had markers done) would make no difference to outcome. They would not live longer (although they'd live longer with the knowledge of mets) nor would method or timing of detection affect their quality of life.

Oops, late for work. I have a little more to say and will try to get to it tomorrow, about uncertainty.....

Debbie Laxague

how accurate is the Her2serum test?
 

Anybody is successful in monitoring their recurrence with Her2Serum test? Does this correlate with CA27-29?

Thanks,
Julie

Hi all.
I'm chiming in as another who had "routine" scans (scheduled by my onc, I never asked for them) which led to two terrifying false positive scares, (the second scan was scheduled to make sure the first false positive had really been just that) which then led to even more scans to finally prove that the earlier scans were indeed clear after all!
I've had it with routine scans. I continue to do blood work (no her 2 serum) and physical exams, but that's it, unless there are symptoms.
Linda
stage 3a
over 2 years ned

I really must chime in on this one with my experience.

My regular tumor markers were never reliable. 15.3 at diagnosis os Stage IIIC and basically still at 15.3 and I'm now Stage IV

HER2 serum test - baseline right before beginning Herceptin was 10.1. While on Herceptin it continually dropped and reached a low of 6.3 and stayed there. Stopped Herceptin April 20th. End of June had HER2 serum test and it came back at 9.5 -- still well within normal.

Oncologist then ordered a ct scan of chest, abdomen and pelvis -- mets to both lungs

Oncologist also ordered a ct brain scan - a blip showed up on one image we thought it was nothing but oncologist ordered an MRI to follow up. Lo and behold a 5mm met to the brain.

Evidentally, my system for some reason is very sensitive to the HER2 serum test but not the regular tumor marker test.

Each and every one of us is different. Some women on the board can rely on their tumor markers and if they go up then it means something is going on. Others tumor markers just don't jive.

The HER2 serum test was approved by the FDA not too long ago and I think that is why some oncologists don't use it. I'm very thankful that mine does otherwise I would not know that I have lung mets and a met to the brain as I have absolutely no symptoms.

That's my two cents on the HER2 serum test. It certainly works for me and my oncologist and I agree that we will continue to use it to monitor me.