HER2+

There are different tests to determine HER. The FISH is the recommended one to be most accurate. Your pathology report will tell you which method was used.

It is not low medium or high. It is how many + at the end of it. The more the + the more HER protein on the outside of the cell.

Here is a site that will explain it.

http://www.herceptin.com/breast/

This is a description from Google.  Note the last sentence about amplification.  You most likely had a FISH test.

Fluorescence in-situ hybridization (FISH)

Whereas IHC measures the level of HER2 protein in the tumour sample, FISH testing measures the amount of the HER2/neu gene in each cell. This gene is responsible for the overproduction of the HER2 protein.

There is no number scale for FISH testing. The result is either:

• FISH-negative - normal levels of the gene are present, or
• FISH-positive - excessive amounts of the gene are present. This is sometimes called gene amplification.

About a year ago I read a series of articles about problems with accuracy in Her2 testing.  The bottom line was that was too much variance between interpretation of scores and therefore too high a rate of misinterpreted tests.  A fair number of tumors came back with a different result when re-tested.  I would discuss your Her2 test with your doctor and see if you can have it re-tested at a different lab if you are still concerned.

barbiecorn - aside from cardiac concerns the SE from Herceptin are generally well tolerated.  Prior to starting Herceptin your onc should get a baseline echo or MUGA scan to determine your ejection fraction percentage, and determine if your heart is healthy enough for treatment.  Also a complete medical history including any cardiac issues in your family is important.  The echo/MUGA scans are usually done quarterly throughout the year of Herceptin to see how well your heart function is being maintained.  According to the Genentech website, in trials I believe that less than 3% of participants had cardiac issues.  Doesn't sound like much unless you are one of them, right?  I personally had no problems, and I finished in January.  A runny nose, a little joint aching - I am willing to trade those for the opportunity to live longer!

Mods, given the recent discussion on lower stages posting in the Stage IV forum, can we move this thread to the Her2+ Forum? That's where it belongs.  Thanks!

barbiecorn - here is an article about Dr. Dennis Slamon, pioneer of Herceptin.

http://www.latimesmagazine.com/the-california-cure-the-gene-stalker-dr-dennis-j-slamon.html

Also, the movie Living Proof is the story of the making of Herceptin, and Dr. Slamon's battle to bring this drug to the market.  Routine treatment (outside of trials) with Herceptin has been happening for less than 10 years, the prognosis for those with Her2+ tumors prior to Herceptin was not particularly good.  As always there are people who were diagnosed and treated that long ago who were Her2+ and have survived but it is problematic to predict who might do well without treatment.

Just because you are HER2+ doesn't mean you will get mets if not treated as you can see with AlaskaAngel. It is a more aggressive form of breast cancer and statistically more women did get mets. Now with Herceptin (and some other drugs in trials) they are seeing a drastic cut in the number of HER2+ women who get mets. The problem is they don't know who will get mets and  who won't so they treat all of us.

barbiecorn there is a woman in my building diagnosed after me in her late 60s that got the same 6 tx of TCH I did (we have the same onc). She has is doing great. I think her final Herceptin is coming up soon. They watch your heart pretty closely if there is a family history or any issues. I'll admit my 2 concerns were my heart and my bones (family history & I'm slightly osteopenic and I was still peri-menopausal before chemo). So far no problems.

All drugs have SE even aspirin. Don't assume you will get them. IMO congestive heart failure from Herceptin is easier to treat than distant mets… and many times can be reversed if Herceptin induced.

Yes barbiecorn (see my signature). I did 6 treatments of CAF (Cytoxan, Adriamycin, and 5-FU/flourouracil).  I didn't do any Herceptin (trastuzumab), and didn't even do a taxane (Taxol or Taxotere).

I was diagnosed HR2 + and am currently in treatment until June. So far other than joint pain and a runny nose I have had no side effects  My MUGA numbers have been normal actually a bit better than the baseline numbers?  I find it helpful reading responses from others it gives me added info. My biggest complaint is radiation burns but that is another story and will be over in less than a week!!

After completion of the Herceptin are there foll up medications that are prescribed?  Did you continue to follow up with only your oncologist or did otherscontinue to see radiology and surgeons? They all want continued follow ups which seems a bit much to me not to mention I am tired of doctors waiting room and extra inusrance co pays.  It makes sense to follow up with oncology and see others if only needed"?  I would appreciate opinions on that

Marj now that I am past the first year (post initial surgery) I see my once once a year and my BS once a year… basically see one of them every 6 month. I didn't do rads.

I see my PS in 2 weeks for follow up on my tattoos he did 2 week ago. I think after that I might have to see him once a year. My BS said I would have follow ups with him. I think with implants you need to be monitored… takes the place of the mammos I now don't get anymore since I don't have real boobs).

Still see the gyno, PCP, ophthalmologist once a year. 

I was told our recurrence was  highest the first 3 years including the year of treatment… which might be exactly what AA is saying.

Everyplace does it a little different. I know many people don't ever see their BS ever again. I was told I'd be seeing my BS for life by his nurse. Maybe that's because I got a BMX and can't do mammos. I only get physical exams now granted my gyno, onc as well as my BS does that. I guess I get felt up more now even though I don't have real boobs.

Anna4969 and lago,

I checked the current NCCN Guidelines, which at present indicate that there is no set protocol because:

"Professional associations including the Institute of Medicine and the American Society of Clinical Oncology, as well as the Lance Armstrong Foundation, are working to create formal guidance to physicians on creating survivorship plans.

The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines^TM) have provided information to doctors about surveillance following completion of therapy, but NCCN is now expanding many of the NCCN Guidelines to include continuing and late effects of various treatments.

Until formal survivorship plans are widely adopted, people who arm themselves with information and documentation about their care will be in a good position to make a smooth transition from cancer patient to survivor."

http://www.nccn.com/component/content/article/66-physical/119-after-cancer-follow-up-care.html

(under "Make a Plan")

I was supposed to see my onc every 6 months for the first 2 years (he is in Seattle and I am in Alaska), and then yearly for the following 3 years. He was mostly a zero when it came to providing information, so I only saw him for the first 3 years, and then I saw a different onc every year for a 2 years. By the time I got to the 6th year I was more than happy to stop having anything but annual labs, an annual physical exam, and annual mammo.

Anna,

My oncologists dates the time from the end of chemo (not herceptin).  So while I was diagnosed in November, my mastectomy was in November, my chemo wasn't finished until February and that is what my doctor uses for my anniversary.

I am  5 years out from chemo (4 from herceptin) and am still NED.