Why isn't this info up on the website?

MsBliss

When I was diagnosed I came to this and the TNBC website.  I learned that the Oncotyping was not available unless you were estrogen receptor positive.  BUT WHY WAS THERE NO INFORMATION PROVIDED REGARDING "MAMMOPRINT" and it's application to us triple negative ladies?  I COULD HAVE USED THIS PROCEDURE to determine what I must now do as far as adjuvant therapy.  I no longer have the option to do Mammoprint and avail myself of the critical information it could have provided.  I am completely confused as to why these and other forums failed to provide the information regarding mammoprint's application for the TN.

misty123

what is mammoprint, I have never heard this word before?

deb6563

mammoprint?

hollyann

MsBliss probably because it is such a new procedure not much is known about it....

mikkspencer

mammoprint is this a type of radiation or chemo?

Babyface

Hi MsBliss

  Understand that with mammaprint you would get an "opinion" on what your risk of recurrence for 5-7 years is. The testing has become accepted in some European countries but not yet widely accepted in North America. I would hazard a guess that most onc's when treating triple - would not base adjuvant decisions solely on mp, or, in other words, simply because you came back with a lower risk decide not to do chemo solely for that reason. I personally wouldnt feel comfortable with an aggressive BC disregarding the standard treatments because my tumour "seems" to indicate that it might fall within the category of "not likely" to recurr. Might this test and others be a bigger part of the decison tree in the future...sure they will...but until there are long term follow ups with those who perhaps in other countries choose to avoid chemo because of MP imho I dont think the Dr.'s here are going to be jumping on the bandwagon in totality just yet. Remember that when you are dealing with triple neg you are dealing with a variety of tumours that are still very unpredicatable even with mp. For those who are interested ...here is a link to an article from last year which references the increasing use of MP by the Dutch goverment in their health care system and also in simple terms explains MP

http://www.medicalnewstoday.com/articles/122036.php

and a further article from Dr. Susan Love where both the upside and pitfalls of this testing is discussed

http://www.dslrf.org/endingbc/content.asp?L2=3&L3=5&SID=130&CID=1317&PID=20&CATID=0

Hope this helps !

deb6563

I don't know if it was mammaprint that I had or not, but I was given a paper that was computer generated showing the likelyhood of my cancer returning within 5 years both with and without chemo.  It shows that having chemo cut the risk of recurrance in half.

lexislove

That's Adjuvant Online deb6563.

I'm not TN, but since TN is known for its aggresivness, I highly doubt that any onc would rely on any "test" to decide treatment. And since, there is no targeted therapies available yet... TN needs to be treated aggressivly , meaning surgery chemo and rads.

deb6563

You are right lexislove, I remeber seeing that name on the paper.  My onc had already told me that she was recommending dd A/C and Taxol for me before she showed me the paper and she wanted me to really consider the Avastin trial.  She said the more aggressive we treat my triple negative, the better my chances are

lexislove

Sounds like you onc is "on the ball". TN has better response to Dose dense chemo regime as well. I look at everything this way, no matter how aggresive my BC was, I would do anything to treat it. If I had to drink bleach to get rid of it I would. I find it very unsettling that some woman rely on a "test" when it comes to their treatment. Ummmm... bonjour..this is cancer!!! JMO

misty123

Thanks for the info ladies, I agree that I am comfortable hitting it hard while it is early stage because it is so aggressive.

MsBliss

Chemo is not an easy option for me as I have a secondary condition.  If there was a test at least I could weigh the risks better.  Further to that, chemo can cause a bit of blow back.  If you are on the wrong protocol, your cancer gets to spread and adapt.  A "test" or neoadjuvant would at least indicate if you are on the right cocktail. 

tibet

My onc told me usually if it is early stage, the chemo don't make tumor resistant except BRCA gene carriers may get resistent towards toxol type of chemo. Because in early stage adjutant setting, there is not clear if there are any bad cells around to start with, could be that all are removed from the surgery. Only in tumor case where tumor can get resistant from chemo.  For BC, there are standard protocol and anything else is not proven.

MsBliss

good point...

pinkdove10

Hi

What exactly would a Triple-Negitive mean?  What would be a good web-site to find info? Is it good, bad? Am I a TN? My Onco has not given full info. I do know that My Er and PR is -ve.  Where do i look for more info?

lesliee1971

MsBliss:

Hi, i am new to this forum and feel i might be able to shed some light on the MammaPrint questions.  For full disclosure, I used to work with Agendia/MammaPrint, and my husband still does. 

MammaPrint is a second-generation multi-gene test for recurrence. They analyze about 1500 total genes, with a specific 70 to determine either a high risk or low risk without the intermediate score.  Many women don't know much about it as it has only been offered in the US for about a year now.  Many Onc's may not know much about it as it is ordered by your surgeon, and the test is run on fresh tumor sample.  That means the tissue has to be taken at either initial bx, lumpectomy, or mastectomy.

Without trying to sound like a advertisement, some of the differences of mammaprint are that it is the only FDA-cleared/multi-gene assay. (no oncotype is not) It is indicated for both ER- & ER+ BC.  I was just told that it has just been approved for up to 3+ nodes as well.  The dominant test is the OncotypeDx.  The oncologist can order it and it is easier to order as they can analyse samples using parafin blocks.  You can research both companies at www.agendia.com and www.genomichealth.com

Hope this helps.

Meggy

Sounds very interesting....the only thing is that lets say they say there's only a 10% chance it will recur and you don't do chemo.  Boy would it suck if you were the 10%.  Plus, they could even be wrong about the 10%.  

MsBliss

A friend of mine, who has metaplastic triple negative, dug deep into Adjuvant Online to see what data formed the basis of the number she was given for her particular subset.  After she peeled back the pages, she learned the data given to her was based on 27 patients!  Also, the data was very old and did not correct for vitamin D levels or other issues that are surfacing now.  Further, she noted that the percentage given to her was a GENERAL percentage, not absolute.  If the normal number of cases of cancer were 2 out of 100, and the chemo resulted in 1 case out of 100, the percentage of effectiveness given to her was either 50% less chance of recurrence or in some cases, 100% chance of reducing recurrence.  It was all in how the numbers were handled.  When she confronted one of her doctors, the doctor threw up his hands and admitted "Yes, I know the data is limited!", but she was furious that the doctors put so much stock in the numbers from AO without really understanding what it means.