Newcomer with Her2 Staus Question..

[sabpri]

Hello - My name is Natalie and I am 37 years old with 2 year old twins and a 4 year old daugther. I was diagnosed with advanced breast cancer in August of 2005 and just finished treatments which included chemo first - A/C, then Taxotere/Carbo/Herceptin, Double Masectomy, then 30 radiation treatments. As you all know, I have been to hell and back in the last 6 months. I found this site through a friend and just love it - so much great information and people!!!!! As usual for me, I always have something weird and never am I "textbook" for anything, so I still don't have a clear answer from my oncologist, so maybe you all can help me out.

I had 2 Tumors, very large (7cm and 5cm), in my left breast (both IDC) and 7/16+ lymph. Got so big since OB blew it off when I went in with lump and said it was blocked milk ducts from nursing twins, but that's a whole other story! Anyway, here is the Pathology on the 2 Tumors and I cannot figure out if I am Her2+ or not. Regardless, my onc is treating me as if I am Her2+ and I will be getting Herceptin for at least a year. Can someone look at my info below and give me any thoughts?

Tumor #1 -
E/R and P/R Negative
Ki67 Proliferation >90%
Her2/Neu Negative (score = 0) but then there is ** saying see not below which reads: Bioposy shows 90% of malignant cells are negative. However, small fraction, less than 10% demonstrate strong membranous expression.

FISH Analysis - Amplified (there is no number like I have seen on this board). Just says analysis shows majority of lesions as unamplified, but results show amplified subpopulation located centrally within block.

p53 Positive (93%)

Tumor #2 -
E/R Positive >80%
P/R Positive - 50%
Ki67 - 30%
Her2Neu - Weakly Positive (Score = 2+). Stain shows weak reactivity in greater than 10% of malignant cells.

FISH Analysis - Not Amplified.

p53 Negative (1%)

Then it says "histomorphologies of malignant cells are significantly different between lesions"".

In other words, what in the heck am I?? My oncologist said not to worry, that we are treating me as if I have both types of cancer, Her2 (treating with Herceptin) and E/R, P/R {Positive) will start Arimidex after I have ovaries removed in a few weeks. That's finre with me, but I would still like to get a better understanding of the whole Her2 thing. I have heard Herceptin does not work well on people who are not strongly positive, so I am not sure if I am or not.

If anyone has any ideas, feel free to comment.

Thanks so much!
Natalie

[jener8er]

Hi Natalie!!!! I'm so glad you joined over here - you will learn SO SO much from all these ladies (and gents) here. I don't know what to tell you as far as your pathology - you do seem a bit different from most people! Hey I always say, if you're going to do something, do it ALL the way!!! I'm so glad your recent scans were negative. I have PET/CT and bone scans coming up next week so I don't expect to be sleeping for a while.

Anyway, welcome, I'm sure someone here can help you out, and as I said, you will learn so much your head will spin (but in a GOOD way!).
Take care,
Jenny

[Sheila]

Hi Natalie
Welcome to the board...I also have twin girls...they are 30...sounds like you had 2 different types of breast cancer which is not unusual...my Mom had 3 types in 1 breast...13/19 positive nodes....and is a 20 year survivor...she does not know if she was Her2+ as they didn't test back then.....you have come to the right place...if you have any questions ask...there is probably someone who has been there.

[StephN]

Welcome!
Looks like you got ahead of the game with the TWO differing types of tumors to deal with at once.
Seems like your med onc is doing the reasonable thing in treating you with both Herceptin and hormone suppressor.

One thing that you did not tell us is the "grade" of your tumors. If these are high grade or not, it may not matter. But if one is likely to be more aggressive than the other then that is another consideration.
The Herceptin will be very benign stuff compared to what you have had, and since it does not attack any other kind of cells, you will get a chance to recoup from all you have endured.
Hormone suppressors can have some side effects, so ask about those and why he wants you to have Arimidex over another choice.
This may seem like a lot to take in - but you seem to be progressing through the adjuvent therapy nicely.
Hope your kids are letting you get some sleep at night!

[Lee]

I know you from the INCIID parenting mults board! (I post on there occasionally as SharonB). I also have twins, they are almost 5 yrs old, and a 7 yr old. I was diagnosed in Sept. with breast cancer, her2neu+++, and they found some metastases in my liver so I've been on a slightly different chemo regimen than you (taxol, carboplatin & herceptin) following a lumpectomy.

I don't know the answer to your question, but my opinion is that it is good to be treated as aggressively as possible. If there is any chance you are her2 positive, you should definitely get the herceptin. I have responded *really* well to chemo (a CT scan earlier this week shows the cancer in my liver essentially gone) and I think herceptin has a lot to do with that.

Good to see you here, and I'm so glad you've had good news lately. This is a tough road to hoe but I've found SO much good information on this site, it's been really helpful and very comforting at times to see how many women here are *way* outliving the statistics.

[Kim in CA]

Hi Natalie,

Welcome to the board. Glad to hear you're getting the Herceptin. Even if you are not strongly positive, it still is the best thing we have got for now, and will be a cakewalk compared to chemo!

Take Care, Kim in CA

[al from Canada]

Dear Natalie,

My heart truly goes out to you for having to have experienced this much grief so early in your life. Your only 2 years older than our eldest daughter and I can't help but think....You shouldn't be here but, now that you are, you have come across the most positive and educational support group out there.

As far as your HER2 status goes, I think your oncologist is brilliant and a person with vision. Chances are that you started with the negative tumor and it broke-off and created its own signature: HER2+. It has also been established that tumors will change their receptor identities as they spread, esp. HER2 and ER. My thought is that if your tumor, or its remains, wished to spread more it may become HER2+++. Herceptin will not work in tumors that are weakly HER2+ but who knows what the HER2 status of the 6th lymph node is. I think taking herceptin may help knock-out any new little micro-mets floating out there which may be HER2 stronger than any of the parent cells.

We all here know what a traumatic time this has been for you and truly emphasis. I think that given another oncologist, your situation would be very worrysome BUT, yours is on the ball and I feel your doctor has tipped the odds in your favor. Just remember that stress weakens the immune system and you need it to fight the cancer. Stay positive and all will be well.

Good luck and don't be a stranger,
Al

[jener8er]

Hi Sharon, I know you too from PNO (posted there as lucylove) and I'm so glad to see you over here! That is great news that you have responded so well to the chemo, lets hope it stays that way. I'm still getting Herceptin, just starting my 2nd year. Not ready to stop it just yet. Isn't there just so much information on this site? It has helped me SO SO much over the last year and a half (can't believe it's been that long). Anyway, just wanted to say Hello, and it's so good to hear you are doing well.
Take care,
Jenny

[Lee]

I've been wondering how you are doing. Glad to hear things are going well! How often are you getting herceptin? I'm doing 2 more months of chemo and then will move on to hercepin once every 3wks. Keeping fingers crossed that it keeps things under control. I was SO glad to get the CT results back this week, out of 3 spots that were there, only 1 is faintly visible (and much smaller), and my onc things it is probably just some residual debris that hasn't been totally cleared out yet. Gives me a lot of hope!

So good to see you, and also good to know you've gotten lots of info here. My sister actually found this site and it's been invaluable.

Keep in touch!

[Bev]

Welcome. I can't help with the Path but I have twins too(11years old). I have been wondering if perhaps there may be a connection between twins and BC. There may also be a connection to twins and going crazy but that's another story. I'm triple pos for 1 tumor and have been doing more or less the same treatment. Take care. BB

[Nicola]

Hi Natalie,

I am so sorry for all you had to endure. I am 37 yrs. old too, I have been married for 6 years on June 17, 05. I have 3 beautiful step children ranging in age from 22-16. I was diagnosed in March of 04 with DCIS stage "0" noninvasive breast cancer, had a lumpectomy and radiation everyday for 8 weeks. I was doing wonderfully and going for mammograms and check-ups every 6 months. On Dec.1, 05 I went in to have my gall bladder removed after having a really bad gall bladder attack. When they went in to remove it they found extensive tumors throughout my liver in both lobes, I also have two spots on my spine at the T8 & T9. I still have a hard time figuring out how noninvasive stage "0" breast cancer metastasized. I am HER2 positive and currently I am on a clinical trial consisting of Herceptin, Taxol and Lapatinib(which crosses the blood brain barrior) once a week. I also receive Zometa, a bone strengthener once a month. I am the first person in the world to be on this trial and I can tell you that it is a very promising combination of drugs. I received my first CT scan since starting chemo last week, I had only had 7 treatments thus far and my scans showed vast improvement in my two largest liver tumors, they had shrunk by 20%. I will be on some type of chemo for the rest of my life, but if it keeps the mets at bay it is so very worth it.

I am so glad that your onc is treating you aggressively, he sounds like the man with a plan, it is my opinion that treating you like you are HER2 positive and also treating you hormonally is the right way to go. Stay strong Hon, we are all here for you. This is the most amazing group of people, they are so kind and supportive, have a plethora of info, and all are a inspiration. While the "C word" is still the most hated word in the world of health it is not the death sentence that it once was, it has now become much like diabetes, it can be a manageable disease that we can all live with and keep in check for a very long time and hopefully soon they will find a cure.

Lots of Love & Hugs,
Nicola