Contradicting Her2 results??

MMunday

Hi Everyone,

I am so frustrated....just feel kind of lost. I have been working with two Onc and really like both. One here in my smaller town and one at a research hospital. I posted a while back and am still in the same mucky water...it seems there is so much gray area or maybe it's just me...LOL! My core biopsy was a IHC 3++ but Onc here did not trust that in house lab so sent it out to a larger prominent lab (the actual tumor block) and did FISH. During this time I had gone for a second opinion at U of MD. When FISH came back negative everyone wanted to 100% sure because you don't want miss out on Herceptin if it is needed. Onc at U of MD explained how they had found you could not have the gene amplification yet still the high protein count and benefit from Herceptin. So U of MD redid the IHC on the actual tumor block..(the first was done on core biopsy) but they said the tumor block was not well preserved??? What does that mean and who's job was it to preserve it??? If IHC came back high 3++ we would redo fish on core biopsy samples...perhaps FISH came back negative because of the tumor block not being well preserved.Ok so IHC comes back positive...in the meantime we also did an Oncotype...back yesterday...recurrence rate 28 (chemo is a definite, no question we did it for the HER2 facto) HER2 negative!!!!! Ok so now I have 2 positives and 2 negatives with one more FISH to go but I'm going a little batty!! After the last IHC the tumor board had met and everyone had agreed I needed Herceptin so now if anyone comes back and says ohh never mind your HER2 negative ....how can I trust that??

I feel like I am in such limbo...surgery was July 7th and I need to get started soon. I have researched just about every chemo combo available...and who has time for this....( I mean that with a grain of salt...I know this is our lives and the most important thing but in the mean time you feel like your days are being sucked away by all the info and trying to figure out the best options...I feel like sometimes the Oncs struggle as much as we do!

I will get my port next week ...I had held off to see what chemo I would do...I just wasn't sure I wanted to go the port route but I think that is probably best. I would like to do TCH if I need Herceptin ...don't want to risk AC and not be bale to get H. If no Herceptin dose dense AC+T.

Was looking at TC 6 doses instead of 4 but most Onc seem to recommend AC+T. My cancer seems to be an aggressive booger. I am 36 and my new path report seems to point to multi focal...which is the first time I have heard that...with the largest being 2.5cm...no other sizes mentioned. I also had extensive lymphovascular invasion and 2 positive nodes ...one being 1.7 cm. Anyone else have a hard time with test results or borderline HER2 ??

Thanks so much for listening :)It's so hard to explain to people not in it though bless their hearts they try!!

I also had a revelation that I can do all the research I need but then I just need to do what feels right and makes me most comfortable...God doesn't need my help...just my faith, he can handle the rest!!

Love,

Michele

Dx 6/2009, IDC, 2cm, Stage IIb, Grade 2, 2/8 nodes, ER+/PR+

lexislove

Demand to get retested for Her2. If you are indeed +..Herceptin is the most important chemo in your arsenal. This isn't something that should just be overlooked.

As for the TCH or ACT chemo combo's....both are good. AC has a slightly higher risk of heart problems down the road. I think it was a 2% increase..something very..very small.

I did the AC/T myself. I wasn't even offered TCH! I found out about TC on these boards...lol.

I handled AC good. My heart was fine and I was monitored. I did neo adjuvant chemo, chemo b4 my mastectomy to shrink my pig tumor, the AC just melted the thing so fast. After my 1st AC it shrunk my tumor to 1/2 its original size..its powerful stuff.

cbm

I agree with lexis--and if you are 36 and have no heart problems I wouldn't give up on the AC; it is a highly effective weapon for triple positive bc. 

I had a mixed tumor that made it hard for me to understand parts of the path report.   It meant that parts of my tumor had different characteristics than other parts (mine showed a little IDC and a little ILC all in there together).  The net of that might affect the apparent degree of Her2?  My Her2 amount is not large either--from what I can tell, right over the border. (although the pa says whatever, you are +, that's what matters.)  I asked my onc why I didn't get Herceptin first, if it was the most important.  I had one node but it was huge--1.6 cm--and loaded with malignant cells.  He said that you can't give A and H together and that AC was the powerhouse for stopping the spread, for me.  I had 4 dose dense AC and 12 TH, then 9 more months of herceptin.

I have a congenital cardiac arrythmia and have taken propanolol for WPW for 27 years; I also have extensive allergies to things like hair dye, latex, nickel, mold. . . and green beans. . . My bp dropped like a rock in the first few minutes of mx surgery; allergy to muscle relaxant.  None the less, they said I would have no problems with either the AC or the TH, and I didn't.

I think you want the big guns whenever and however you can get them.  It sounds like you are getting a lot of attention and that is extremely important.

Good luck to you; it gets easier once all the decisions are made and the info is on the table.  The ramp up is a brute though; hang in there, you are doing all the righ things.

C

helena67

I agree that it seems unsettling. Even if the next test is finally considered negative, maybe you should consider taking at least a few treatments of Herceptin (together with the T). There is a small Finnish study called FinHer that indicates that 9 weeks of Herceptin (3 cycles of 3 weeks each) may offer benefit. But you should take it together with the chemo. But I guess you would have to pay for it yourself then. But that is something that I would consider if I were in your shoes (if it is finally decided to be negative).

Best wishes.

Helena.

orange1

I think either AC TH or TCH will be fine for you (assming no underlying medical condition that would point to avoiding the adriamycin).  The most important thing is for you to have Herceptin with your chemo.  You already have 2 positive results - there must be something her2 + going on in your tumor - maybe portions of it are positive and portions are negative.  ICH 3+ is enough to qualify you for herceptin.  IMO, its time to quit testing (you don't want to be arguing with an insurance company if the next one comes back negative).  Generally, the Herceptin is the easiest to deal with physically, so there is no downside for you to do herceptin, only upside.  The only downside is for your insurance company. 

I don't understand the logic of redoing the FISH if ICH is 3+.  ICH 3+ alone is enough to qualify you for herceptin and, as your U of M onc said, even if not Her2 amplified - only excess protein, Herceptin will help you.  With positive nodes and LVI you don't want to mess around with this.

If one onc is reluctant to give Herceptin, I'd go to the other. 

Best if luck to you and let us know how it turns out. 

Jackie

mnejennings

My mom is having the same issues and they are extremely upsetting. It's like one second they're giving you hope and the next they're ripping it away. She was diagnosed her/neu 2+ from her biopsy and now they're saying she's ner/heu negative from her lumpectomy. I'm so sorry you have to go through this and it's unfair that not much is being done for you to ensure accuracy. I have read a lot about the ICH test having false positives but if the doctors are urging the use of herceptin I would absolutely hop on the herceptin train. Good luck you'll be in my thoughts and prayers

BrandonMom

Michelle,

 My tumor was also multi-focal.  One of my tumors was HER+, the other one was not. I suspect that is what is happening to you.  I know how it feels to get mixed results.  My first test came back HER-, so when I saw HER+, I thought there was a mistake.  Turns out the tumors were different.  If any of your cancer cells are HER+, and it seems like they are, you should have Herceptin.  By the way, I was originally on the dose dense AC followed by taxol.  After AC, my onc said my tumor had shrunk enough for my surgery.  The path after the surgery showed some cells HER+, so that meant I changed from Taxol to Taxol/Herceptin.  If you want to talk more, feel free to PM me.

pmm10414

I had AC followed by Taxol/Herceptin 12 doses prior to surgury -- path and PET scan say they got 100% of cancer.  Alot of side affects, but this result was well worth it.  I am undergoing more Herceptin weekly and radiation 30 rads.  Good luck and God Bless.