TRIPLE POSITIVE GROUP

yeah. I too have an unusually spelled last name. If they tell me they can't find me I tell them to look under the misspelled name. Yep. Almost every time. 6 letters and they get it wrong.  It pays to be vigilant. 

Denny123, sorry to hear about the recurrence. Wow, how did they even find it there? The good thing is, though, just ask Pbrain... you are getting the SUPER HERCEPTIN. i hope that it is easy on you, because i am already sure that it will do miracles for you.

Denny I'm sorry this is happening to you, but this is supposed to be great--Super good luck

Good Morning ladies!  I just want to give a update on what I have found.  I requested a copy of all of my reports and they did indeed send in for a FISH test.  This was the results:

Both tumors  HER2 by IHC weakly positive/equivocal (2+)                                                                                                                                   Both tumors  HER2 FISH   Negative/not Amplified

                                                     tumor #1                                                tumor#2

  HER2: CEP-17 ratio                     1.4:1                                                       1.4:1

Average HER2 signal                      2.0                                                           2.1

Maximum HER2 signal                    4.0                                                           5.0

Average CEP-17 signal                   1.4                                                          1.6

Number of cells scanned                100                                                         100

I'm not sure what all of that means but I believe like SpecialK said that for treatment purposes I am considered negative.  So does that mean on paper I am also HER2- or am I HER2+ but the FISH test trumps the IHC?  I guess it really doesn't matter since my treatment will stay the same but it just confused me when he reffered to me as HER2+ last week and I had not heard that before!  

i have been reading the nccn guidelines, and was stunned to see my oncologists' name on it, as one of the people who makes guidelines for breast cancer treatment in america, so that is so good. he is a strange man at times, but my admiration has grown for him over time. i had gone on a walking and hiking trip to utah, right after the government shut down, last november, and when i told him, he said it was his absolute favourite place on the planet, and we looked at pictures on my genius fone, and it was great. he was amazed that i was able to do the trails, and looked at me with a little respect! i did tell him that sometimes, i had to stop every 5 minutes, and catch my breath. and i showed him an apache marble i had gotten from a shop there, it is from the colorado river there- i loooove rocks! anyway, next visit, i gave him one, with a note saying that indian shaman carried them for healing properties, in their belief system. and he loved it! so  a woman here on bco had provided a link to nccn guidelines for treatment last friday, somewhere here on bco, and i have been reading it. it is very dense, and extremely informative, and i am almost halfway through.(i have other things to do, too!)

point being, AINNIEEC, that the guidelines that were established in 2013, are to treat women that are equivocal(2+) like you and i, as if we are positive. because enough cells like that, that they count, WILL respond to her2 treatment, as you know, + calls for agressive treatment, as it is agressive itself! hope this helps.

AnnieeC I would get a 2nd opinion just to have piece of mind. Your onc may be correct but doesn't seem to be explaining, or at least in terms of what you can understand why you are not getting chemo/Herceptin. If it's because you HER2- then why does it say something different on your chart. (But to be honest the FISH test trumps the other other test. FISH test you either are or are not. The other test had the unequivocal reading. At least that was my understanding). But given you are Stage II with a 2cm tumor with LVI I would want more info. Granted node status is given more weight than LVI. I think years ago they felt LVI was more important but LVI with out node invasion might not be as much of a concern.

AnnieC I'm with Lago and fluffqueen - I'd get a second opinion primarily because of the LVI and equivocal HER2 status.  You seem to be a borderline case.  Perhaps you could request a tumor board on your case.  Is there an NCI center located near you? 

fluff, I agree she should have it checked out, but very unlikely that it's anything.  For your anxiety-calming purposes, my mom had bc so I was always super paranoid.  My breasts have always been kind of lumpy so I've had a number of needle biopsies and so forth over the years.  Always b9 until 2012, but I'm in my 40s now.  So odds are excellent that it's nothing.

Anniee your problems are a big deal. This is a forum. If we didn't want to be bothered we wouldn't answer. This beginning part is so hard because you don't have the experience so many others here do. You're always 2nd guessing in the beginning. Feel free to ask more questions and keep us posted.

My diagnosis was delayed due to my IDC being missed.  I went to MD Anderson for a second opinion, and they recommended chemo and Herceptin even though by the time I started it I was 6.5 months post mastectomy.   I was surprised, but they felt it would still benefit me.  So I did it. 

See Annie u let u'r A$$ talk for u.  It's funny because I wouldn't have compared the two,  It's like comparing two fruit a tomato and a strawberry, well u wouldn't put a tomato in a fruit salad. 2 separate things. Ask anything anytime these women are amazing. I've always said that.

AnnieeC what camillegal said. Seriously if you had a spot on your colon, colon cancer is usually very slow growing so no of course you would take the colon, intestines and rectum. Initially I wanted to do a bmx but my BS said he wouldn't recommend taking healthy tissue but would support what ever decision I made... then I had the MRI and his tune changed.

Fluff you know what I say. Don't worry till unless they tell you they actually found a problem.

Denny, you go girl and believe in Kadcyla with every fiber of your being.  The drug targets the Her2 receptor on the cell (so almost exclusively breast cancer cells) comes cruising in through the receptor (welcome to my web said the spider to the fly) and has chemo attached.  So total bombardment!  Blast at each and every one of those tumor cells and keep us posted on your side effects and how you are feeling because you, my dear, are on the cutting edge and will be just fine.

Anniee, Kathec is right.  Your FISH results are definitely saying no over-expression of Her2 receptors, but demand to be treated like a Her2 gal.  Currently my company has long-term studies running on the benefits of herceptin for light to moderate to equivocal (meaning kind of wussie) expressers.  It is believed that Herceptin could possibly help many women who don't normally get it.  I know this may come down to a matter or reimbursement, so look into the potential for getting a grant from Genentech.  My Mom is on one for her macular degeneration.  She gets Lucentis and it costs her about 40 bucks a month as oppposed to 400 a month.

BTW everyone, my Mom had the stereotactic biopsy and her calcifications were benign.  God is good :-)  Thanks for listening to me worry.  I feel like I can handle this, but those I love just should not!

pbrain so happy for your Mom and you. 

Pbrain, wow it has been so long since you had mentioned your fears about your mother, i had completely forgotton. Soo happy for both of you.