Her2 + and Oncotype????
 

Hi, my FISH test came back positive for HER2. Was told that since it was postive that Oncotype test wouldn't be done. Told insurance won't pay for it if I"m Her2 Positive. Can anyone explain why my oncotype wasn't tested? Did anyone else have theirs tested? What do the results mean? thanks

Re: Her2 + and Oncotype????
 

This happened to me ... the onc was waiting to make sure my nodes were clear and then was going to send out my HER2 equivocal tumor for the oncotype test. If the tumor gets a low enough score, you can possibly skip the chemo, again if your nodes are clear.

HER2 positive is a TOTAL GAME CHANGER. Even with clear nodes, the standard of care is chemo and Herceptin, because HER2 positive by definition is a more aggressive cancer.

So ... because my double mastectomy revealed a HER2 positive tumor in the "healthy" breast, it didn't matter anymore that I had a tumor in the other breast that may have qualified for no chemo. Even at Stage 1, chemo and Herceptin is what is recommended for HER2 positive tumors.

Positive for HER2 means the tumor overexpresses the HER2 receptor on the surface of the cell, which make it replicate itself VERY fast and aggressively. Until Herceptin came along, the prognosis for women diagnosed with HER2+++ tumors was poor, even those diagnosed diagnosed early stage, because without Herceptin, the cancers tended to recur/metastasize much more readily than HER2 negative.

Herceptin is a targeted drug that specifically attacks the HER2 part of the cancer cell that is overexpressing and manufacturing new cells in overdrive.

Dr Dennis Slamon was instrumental in developing Herceptin and if you are interested, you can google his name and search for posts referring to him on this site too.

Herceptin was first only approved for Stage 4 patients ... it only became available to early stagers approximately in 2006 or so.

I am grateful every day for Dr Slamon and Herceptin!

Carol Ann

Re: Her2 + and Oncotype????
 

My understanding is that Oncotype is done to help decide whether chemo will help the odds of recurrence. If you are HER2+++, you are getting chemo so the Oncotype testing is moot.

Re: Her2 + and Oncotype????
 

thanks ladies! Trying to learn as much as I can about this disease. I found some ppl don't want to know. Me.... I want to know EVERYTHING!!!! It puts my mind at ease. So if anyone has anywhere I can learn more plz direct me!!!!! thanks

Re: Her2 + and Oncotype????
 

If you are up to watching a Lifetime movie about Dr Slamon and the research and funding for Herceptin, check out the film Living Proof starring Harry Connick, Jr as Dr Slamon. It is pretty accurate fact wise. :)

And have tissues ready if you decide to watch it!

Carol Ann

Re: Her2 + and Oncotype????
 

thanks, will watch it tomorrow if we can stream on Neftflix.

Re: Her2 + and Oncotype????
 

Carol Ann, thanks for suggesting "Living Proof". Just watched it. My husband cried more than me. So glad that Dr. Slamon stayed with his belief that this drug would help. Now if we can only find a cure.

Re: Her2 + and Oncotype????
 

I’ve watch Living Proof twice now. I’m very thankful that Dr. Slamon fought to get the funding for Herceptin. It’s saved so many lives!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!

Re: Her2 + and Oncotype????
 

See if Foundation one will work with you on deeper testing. Insurance should not limit your testing "just because" you are her2+. Full genomic profiling should be performed on your recent tumor tissue so a complete report of your tumor type is identified.

It is old school to think this info is not helpful. This is all my opinion, of course, but I am not alone in this thinking.

Read up on Foundation One tumor testing - they explain much better than me and I think they will work with patients when insurance won't pay.

Here's a bit:
http://www.foundationone.com/
FoundationOne®, FoundationOne® Heme, and FoundationACT™ are fully informative genomic profiles that help physicians make treatment decisions for patients with cancer. Our assays identify the molecular growth drivers of a patient's cancer and help oncologists match them with relevant targeted therapies and immunotherapies.

http://www.foundationone.com/learn.php#7

Good luck!

Re: Her2 + and Oncotype????
 

This would be a different type of testing, wouldn't it ... tests to determine the best course of treatment based on the molecular profile of the tumor vs oncotype which is odds/risks of chemo vs no chemo? Or are they essentially the same and the results are used for these different purposes?

Thanks for bringing this up, SoCalGal! I had BRCA testing done that my insurance would not pay for because I was over 45, not triple negative, etc when I was diagnosed. No one, and I do mean no one, has had breast cancer in either side of my family tree, many aunts and great aunts on both sides with no history of any type of reproductive cancer, so the result was most likely negative. I will never know because the lab would not release the results.

Carol Ann

Re: Her2 + and Oncotype????
 

I think it's all genomic testing. Oncotype, Tumor profiling or molecular assay are all the different names for the same thing.
I think :-)

Re: Her2 + and Oncotype????
 

I was denied by my insurance for the "My Risk" genetic testing and want to ask my dr what type of test I can have to ck for recurrence as I'm triple positive. Does anyone know what type test I need to determine my risk for recurrence in 5-10 years? thanks

Re: Her2 + and Oncotype????
 

I don't think there is any diagnostic test that will tell you specifically what your own risk is. Stages 2 and 3 get scans ... to check and make sure the cancer has not come back/spread. There are overall stats you can discuss with your doc that depend on your own diagnosis, treatment, etc ... but no one really knows for sure.

No scans for Stage 1 is pretty much the standard, I have never had one and I am three years out now. My doc has told me of symptoms to be aware of that may indicate mets ... ongoing pain being the main one.

Having said that ... in general, approximately 30% of early stagers will eventually become metastatic. I do not have the handy cite for this stat, but it is one that is pretty much accepted in the breast cancer community. Your particular risk, again, may be lower or higher.

In the end ... no one really knows who will become metastatic and who won't. It is all a crapshoot. And you are never really out of the woods, no matter how much time has passed. Women have become metastatic after 15 years of being "cancer free."

Check out www.metavivor.org for more info about the need for breast cancer metastasis research. They donate 100% of their donations to research grants specifically for Stage 4 breast cancer patients and metastatic research. Everyone is a volunteer. They are the only breast cancer charity I donate to.

Also, has your doctor discussed either Tamoxifen (if you are premenopausal) or an aromatase inhibitor such as Arimidex (for postmenopausal women) with you? I am also triple positive and I have been on Arimidex since my last chemo treatment, starting while I was still getting Herceptin every 3 weeks. The data for Arimidex says that it cuts the risk of mets in half ... but again, it depends on what your individual risk is to start with , something you would need to discuss with your doctor. Many docs now are urging their early stage patients to stay on it for 10 years vs 5, because there have been studies to show benefit to doing so, over and above the crappy side effects Arimidex and other drugs of this type have.

I wish I could give you a cheerier answer. But there it is.

Carol Ann

Re: Her2 + and Oncotype????
 

Carol Ann, I'm on Arimidex but want to know is there a test to determine my risk factor for recurrence if it's high or low. thanks, I will ask him

Re: Her2 + and Oncotype????
 

Hadit, when you get a chance, if you go up to the quick links box on the right, if you could post your treatment history .. stage, treatment, etc it is very helpful when people read the posts and respond. :)

Generally, the higher the stage, the higher the risk BUT again, there are Stage 3 women out there doing great years later and Stage 1 women who have recurred and died. :(

That is why we need more research $$ into metastasis and its mechanisms and ultimately, how to stop it from happening!

Carol Ann

Re: Her2 + and Oncotype????
 

Carol Ann, thanks for the advice. I'm just so nerveous about this coming back, I'll post my stats in a few. thanks. I really need this site.

Re: Her2 + and Oncotype????
 

Hadit, I am with you ... believe me I struggle with the nerves about all of it, too. I have researched, researched and researched some more about all of it. I so hear you.

This is indeed the best site around for info and support!

Post your info when you get a chance and have the energy! I know it is a huge project, I don't think I was able to do mine until I was through chemo because I just didn't have the energy. It was all so overwhelming.

I didn't find this site until after my double mastectomy because I wasn't HER2positive until after the triple positive tumor was found in my "healthy" breast. This site has helped me so much! So I am always trying to answer what questions I can for others.

Carol Ann

Re: Her2 + and Oncotype????
 

Carol Ann, I did write my stats on the signature but it's not showing up. Can you walk me thru it more clearly as I'm not good at navigating with computers. Sorry, that's what I have kids for and their not home now, lol

Re: Her2 + and Oncotype????
 

Hey, It's there, and I did it all by myself! I too am doing research but figured there are others out there ahead of me doing the same thing, so I thought I'd ask away. Thank you all for taking the time to answer and give guidance. I really need this.

Re: Her2 + and Oncotype????
 

YAY you did it!

Ask away. :) And you know how to use the search box to find threads on specific topics, correct? If you are having trouble doing that, let me know. :)

Carol Ann