Not really sure about her2nue

All of this is so bewildering. I thought that I just had a benign lump 3 months ago and I'm now recovering from a mastectomy and reconstruction of my left breast and 2 treatments into the Red Devil. All my hair is gone and my Family and Friends look at me like I'm taking my last breath. My Onccologist is a wonderful guy, but I don't feel like I know what's going on. I've tried to stay away from the internet cause I know how misleading the info can be. A friend who has been mentoring me through this ordeal recommended this site. I'm still not sure what Her2 Nue means. My Doc keep saying the words but I don't know what he's saying. My cancer is small but very aggressive. I had an ocontype test and the results are not too reassuring. My chance of recurrence is very high. Over 26%. Should I have a mastectomy of the other breast? I'm relatively young, 46, which I hear is a bad thing when it comes to breast cancer. And, I have a very young daughter, she is 3. I went to China 2 years ago to adopt her and now I'm thinking.... Did I do her a disservice? Is she going to lose her Mommy, like she lost her first one? Anyway, sorry for being so morbid, just a little scared.

[Lolly]

Hi, and welcome to the board. Your friend made a very good recommendation by directing you to this site; you'll find plenty of information through the links provided here, and many who are in the same boat.
If you go to the "HER2 Gene" page (see above) you'll find answers to most of your questions about what Her2 neu means. Yes, it's a more aggressive cancer even when small, but Herceptin therapy had changed the prognosis landscape significantly.
Whether or not to have a preventative mastectomy is a tough call, but take the time to gather as much info and facts before deciding. Also, go to the "Community" page and then to "Member's Stories" to read about how some of us have dealt with that question.
We know about the fear and it's ok to be feeling morbid, that's pretty normal stuff for what you've been going through, but the fear and feelings of doom WILL ease as time goes by, just try to get through one day at a time for now. You've found friends, so again, welcome.

<3,
Lolly

I would also like to welcome you. We all have our scary days, especially in the beginning. They do get fewer and far between. From one mama to another, I know you did the right thing in adopting your daughter (way to go by the way). She HAS a mama now and she will continue to have a mama. You are already asking questions and seeking information (this is the best site out there and I work in the cancer field). It is those people that ask questions, keep up on research, seek 2nd opinions, etc. that do well. Please continue to post and share your feelings and ask questions and know that we are here with you!
Love, Joy

You are asking the right question at the right time. If you could go to China to adopt a child I think you are certainly fairly intelligent, which is all in your favor.

Some of us are people who knew zero about HER2 when we were diagnosed. Some were never even told by their doctor that they should be tested for it, and some who were tested for it were never told why it was important or what it means. Some people here have some medical training and background but they too are often asking questions.

But taking the time to learn more about it can mean you would have choices to make about your treatment that can help give you better chances of living longer.

I'm glad you came here.

AlaskaAngel

Hi! What a wonderful thing you did in adopting your daughter!She really needs you and you are going to fight this battle with all your might and unceasing prayers which will be offered for you. I had a left breast mastectomy in 1999. 17 out of 20 lymphnodes were positive. I took adryamycin and taxol for eight months and then arimedex for 5 years. Right at the 5 year mark a pet scan showed 3 small nodules (5mm) on my lung. Also a spot between my lungs and under my arm and something near my back. My doctor has me on herceptin and xeloda. Something that I did wrong was not to get blood tests during the year when I went back to teaching. I guess I could have found out sooner when it would have been smaller.I didn't get any recurrence in the right breast but I do have lymphedema in the left arm. Try to take good care of your arm (I forgot if you said you had positive lymphnodes) I went to physical therapy and they massaged it and wrapped it but now I'm kind of neglecting it except when my husband reminds me that he's going to massage it. I remember praying and asking God to let me stay here with my children longer and He did. Now, I am asking Him again. He is so good to us. "Ask and you shall receive, seek and you shall find, knock and it will be opened to you." I will remember your intentions in my prayers. Onward and Upward- God Bless You, Cathy

I would suggest that you take a knowledgable friend with you to your next oncologist appointment.

Where do you live? Perhaps someone from this site would be willing to accompany you.

The HER2/neu gene is a signalling gene that is overexpressed in 20 to 25% of all breast cancers. Until just a short time ago, you would have been told that your prognosis was poor. BUT there have been many advances in treatment within the past year which have greatly increased your chances of survival.

The HER2 gene was first isolated in 1979 and we have the advantage of over 25 years of research which is just starting to bear fruit.

Read the attached article:
US News and World Report

Warmest Regards
Joe

I would highly recommend that you use the Intenet as much as possible. I don't think I've run across a website yet on breast cancer that was "misguided" and I'm in a doctoral program and very critical of the validity of information.

Plus, once you start searching you'll be able to see the trends. And you can count on sites like the National Cancer Society or articles from peer-reviewed journals. The only ones to really watch out for is those that tout some treatment that hasn't been subjected to rigorous testing but are marketing pieces. And those are quite easy to spot. If the purpose is to sell you something (other than a book by an expert or supplements from a respected expert like Dr. Susan Love [no idea if she has anything like this or not--just using her as an example]).

Another trustworthy site that's not devoted to breast cancer is Amazon.com. I've bought a number of books on breast cancer from them--more from their vendors, which are normally much cheaper, even when new.

Your very best defense is information and the willingness to take responsibility for your own well being. Plus, the more you know, the less frightening it becomes.

Do not second guess yourself. None of us has a (reliable) crystal ball. I've no doubt that adopting your daughter was an excellent decision. Life, unfortunately, doesn't come with any kind of warranty. I'm sure that once you get over the shock, and start taking charge, you'll do fine.

Hi there, I am a 38 year old Mom of 4, also with an aggressive type of cancer. I am HER2NEU +3, high grade and hormone -. I just finished 4 rounds of chemo along with Herceptin, and my mastectomy will be this month. Then 4 more rounds of chemo.
My advice to you is this: Knowledge is power. Research all you can. Herceptin can be the miracle drug out there for the right people. You probably can only get it though in a clinical trial. Contact the nearest major cancer center and ask about the trials. In the meantime, don't worry about your little girl. I thought the same thing, why would God give me 4 little boys, only to take me from them? This disease can still be curable, it just has to be.

The only comment I have, (everything else has been covered), is that make sure you have an "advocate", when you go to appointments, when you have to make critical decisions. The reason being that when we are under times of extraordinary stress such as dealing with cancer, an advocate can help give you a reality check, remember the discussions with your onc, remind you when you forget, and a shoulder to cry on. Stress reduction is probably one of the most under-ratyed therapies around and an advocate can be like valium.

Take care,
Al

Ritacbarker@hotmail.com

Hi: I am a friend of Dan and Jeri Floyd's and had ovarian cancer, stage 3 C and also have an adopted daughter from China. I am a one year survivor at this time. What I thought were 2 medium ovarian cysts, turned out to be hugh cancerous tumors, with spreading to my liver and diaphram. I woke up with 40 staples and looking at 6 months of rigerous chemotherapy. My first thoughts were that my adopted daughter could not lose a mother twice; and that no matter what it took, I would prevail and live to see her grow up.
I stayed away from the internet. First of all I was too sick at the time to do much reading and there was so much conflicting medical advice. Secondly, the percentage of woman who don't get much of a remission was about 50% and I didn't want to focus on that. I was at M.D. Anderson in Houston, Texas and felt overwhelmed by all the treatment options. I decided to take the standard treatment since my cells were "garden variety" and save the scortched earth treatment in the event that the surgery and months of chemo were not enough. I truly believe that your attitude and how you "vision" yourself have a lot to do with your outcome. I meditated and stayed completely focused on getting from one day to the next day and living in that one moment of time. My chemo made me sick, very sick, and I lost a tremendous amount of weight on a frame that didn't have a lot to lose to begin with. I empowered my daughter (she was 8 at the time) with most basic information. What cancer is, what my treatment would be about and how it would affect me. I took her picture and her laughter and lots of trinkets...special bracelets, cards and music to each treatment. I allowed my friends to help in a way that they felt comfortable. Some made dinner, others came with me to Chemo, others drove car pool etc....I found comfort and strength in my close friendships as opposed to joining a support group. I had a wonderful, wonderful doctor who not only took me through the medical aspects of the disease, but helped me deal with the personal toll...my partner ( fiance) at the time, left me after I went into remission. I felt confused about myself as a sexual being since I was only 47 and was going through full blown menopause and chemotherapy at the same time. When I went into remission I still faced menopause and how to deal with that, and learned that I had to accept it and continue to move forward...I had a wonderful woman therapist that dealt with death and illness and she provided me with safe passage through the changes that were occuring. As for whether or not you did your daughter a disservice..that is assuming that you will not have a good outcome, and in no way have you done her a disservice. Through this experience you have a chance to raise a more compassionate and empathetic child. I truly came to believe that I was not led to China to adopt a baby, only to leave her at age 8. Not only that, but my husband and I were divorced...double whammy. There is nothing more terrifying about the disease than that thought and I layed awake, some nights too afraid to shut my eyes thinking that I might die in my sleep...but I slowly began looking for omens..the "signs" that led me to China to lead me through and give me hope. I realized that her life would go on and that while it might not be what I had dreamed of giving her, it was still a better future, filled with love and opportunity that she would not have had otherwise. Don't spend a lot of time thinking that she would have been better with a "healthy" mother...that wasn't her intended Karma..she got YOU and she is a survivor and she will teach you how to be one too. I found talking with the nurse practitioner in my doctor's office very very helpful. They filled in blanks about things that I might not have discussed with him. I found a doctor that made me feel like we were on a team instead of him calling all the shots. I talked with him about not only my medical issues and outcomes, but my personal issues also...I allowed myself to feel the rage, anger, disappointment and fear that comes with having cancer so that I could put it all in my "grief pot" and make room for the gratitude that I now experience. I wish you strength and courage..you have more than you know. I truly believe that your belief in yourself is your greatest tool.