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Her 2 neu positive

Posts: 8
Joined: Oct 2002

Hi -
I was diagnosed on Sept 11 with BC. I had a mastectomy on Sept 30. There were 2 tumors - Stage 1, no lymph nodes involved, ER+. I found out yesterday that I'm positive for Her2/neu. I will be having four treatments of AC starting next Thursday. I am scared stiff! The Adriamycin part really makes me nervous but I know it is most effective with Her2+. I had invasive BC with some DCIS component. I wonder if the Her2 positive is because of this? I read that DCIS usually is Her2+. I am having a hard time finding out what this exactly means though.
I know it means that the cancer is aggressive and coud come back. I will be taking Tamoxifen after chemo. I feel doomed - like I have some cancer somewhere in my body just waiting to explode. Can anyone out there give me any reassurance? I had a pretty positive attitude since I found out until yesterday. Now I'm feeling kind of depressed. I'm only 42!!! Help!!

Posts: 270
Joined: Jul 2001

Hi Maureen
I was 42 when I was diagnosed in October of 2000. My tumor was a little bigger than yours 2.4, I had no lymph nodes positive, ER+, and Her2/neu strongly positive. I had 4 rounds of AC and 4 rounds of Taxotere and since I had a lumpectomy I had 7 weeks of radiation to the breast as well. I think of all the infomation the Her2/neu was the most disturbing for several reasons. It's very difficult to understand, only 25% of the cancers are Her2/nue positive, and my Oncologist changed the protocal when the pathology showed Her2/neu +. Until then he was real casual about the whole thing ... said I had the most common cancer in a good spot for surgery ... bla bla bla. So ... one thing I know is that they only started testing for Her2/neu about 7 years ago so we are lucky to have the knowledge that we need a little more attention. This hasn't help yet ... so let me tell you I am really great. It took a while and I did feel old and I got clinically depressed and went on anti-depressants ... BUT and I do mean it ... you will get back to normal or at least a new normal. During treatment I knew all the drug names and side effects and all ... it's all fading away now ... I'm putting it aside and going forward. If you are seriously depressed talk to yur doctor ... I sure didn't think I would ever need an anti-depressant but I can't imagine getting out of the funk I was in without it. I was and am scared of getting the cancer back but ... I no longer obsess about it. The AC is tough. And you know about the hair ... it's all very scary but (unfortunetely) look how many of us have made it. We are all here to support each other. Tell us how you are doing and what fears you may have. It helps. You are in my thoughts!!! Jamie

Posts: 317
Joined: Apr 2002

Hi Maureen...keep your chin up. Between the chemo and tamoxifen, it really should kill any stray cells that may be roaming around. I was stage 1 also, but no chemo as I was Her-2 negative with a low S-phase. As for the chemo, I have a dear friend who justg went through it, and she did really well. She was premedicated with Azimet(sp?) for nausea in her IV, and then took it by mouth for 48 hours. She said there were times she was slightly nauseated, but she never threw up. She remodeled 2 rooms in her house while going through chemo. They told her that the AC chemo effects are not cumulative, so however she felt after the first treatment, would probably be how she felt for the other 3. For her, this was correct. She didn't have a port put in, but said if she had it to do over, she would, because the Adriamycin is hard on the veins. I wish you the best...please keep us posted. God bless, Cyndi

hummingbyrd's picture
Posts: 961
Joined: Sep 2002

First off welcome to the site even though it may not be where you want to be. I was diagnosed at the age of 38 ER+/PR+/HER2NU w/ 13 out of 27 lymph nodes +, I survived chemo, have had bone mets to arm and low back and lumpectomy from other breast and by the grace of God I'm still here! So no more depression! Go see my web site if you want, I go into great detail on how to 'Conquer Cancer Through Christ.' Actually you do have the right to get depressed, just try not to stay there and if you do try prayer and antidepressants. Both work. God bless. email me if u want hummB

Posts: 41
Joined: Sep 2002

Hi Maureen, I know the feelings you are having. I was a 9 year survivor of breast ca when I was diagnosed with low grade lymphoma. My depression was very deep. I had to pull myself out of the depression pit more than once. I had to turn the tables on the ca and think about all the positives in my life and quit letting the negatives get me down. I am now a 14 year survivor. I had no lymph node involvement. I took Tamoxifen for 5 years with no recurrences of breast ca. My lymphoma is in remission for 4 years now. I work full time and keep as busy as possible. I was 39 when diagnosed with breast ca. I thought my life was over. I was thankfully wrong. I had to go through all the same feelings again when diagnosed with the lymphoma. Some days are I get depressed, but I have noticed these kinds of days are getting fewer and fewer. So hang in there, there is life after cancer, any kind of cancer. Praying for you. Sandee

Posts: 8
Joined: Oct 2002

Hi -
Thanks for the responses. I had been doing fine until yesterday when my husband and I went to the Dana Farber to talk about chemo. I think I cried more yesterday than I have since I found out. It just hit me really hard when we got there and saw so many women. It is so sad. I know I will make it through this and I will go on!!! I guess I was just feeling sorry for myself. I am not a quitter. I know there are a lot of women out there that have it worse than I do. I am lucky it was found early. I am otherwise healthy and I am not going to let this beat me. I have to be around for my kids - ages 10, 8 and 5. I know prayer helps - I have so many people praying for me now and I know it makes a difference. I am not going to dwell on the negative thoughts.
I am preparing myself mentally for chemo. I did hear CA is hard on the veins but no one has mentioned anything about a port. How does that work? I go for a pre-chemo meeting on Wednesday to tour the facilities (what fun!)and get a heart scan. The cardiac toxicity of Adriamycin bothers me so my doctor ordered a heart scan to kind of calm me down a little and reassured me I would be monitored carefully. I just have to get through four treatments. I can do it!!
Thanks everyone,

Posts: 682
Joined: Feb 2001


Forget the port for now - four AC will not be that hard on your veins. If your veins are normally easy to get at for a blood test, there shouldn't be a problem. I followed the AC with four taxol and it was only the last taxol that gave them a little problem - not much.

Putting in a port is more surgery - skip it if you can.

Good Luck!

Posts: 706
Joined: Jul 2001

Hello Maureen:

Like yourself, my final path report showed that I was Her/2neu positive, and in my case, to the tune of 3. I'm now 16 months out of chemo and 13 months out of radiation.

Initially my docs thought I'd only need surgery and radiation. After the reports came back, however, they began talking chemo.
Like yourself, I was frightened. I was totally hormone negative, with approx. 75 percent of my tumor being invasive and the remaining 25 percent being DCIS.

First, Her/2neu generally occurs in
premenopausal women. A lot of the talk you may hear about it is based strictly on "percentages", etc.. As we get farther along in our bc experience, as you will also, we learn that percentages aren't worth very much. Our bodies are all very different, even when our tumor properties may be quite similar or even the same. Please try not to get hung up re the Her/2 thing and envision cancer in your body, ready to explode! That's not good. It's perfectly normal and ok to be afraid. I found that it was possible to be completely positive and completely scared out of my wits at the same time. One feeling doesn't necessarily preclude the other.

Science cannot yet tell us precisely what Her/2neu means to us and if they could, it would be in "percentages". Percentages are arrived at because not everyone with the same thing going on, has the same outcome, even with the same treatment. Remember that!

Rather than try to tell you what I understand about it, please go to: www.nci.nih.gov The info you'll find there is reliable and comes from the National Institutes of Health and the National Cancer Institute.

Please keep in mind that AC treatment (I had 4 cycles also) is considered "aggressive" treatment for a small tumor with no node spread (mine was 1 cm). So, your odds of doing very well are excellent! Although I was afraid, initially, I knew that chemo was what I wanted and needed. I wanted to always know that I'd done the best I could do concerning the best treatment for me. I researched, got three 2nd opinions, talked to other women and settled on what I thought was best for me. Taking everything known and not know into consideration.

None of us are comfortable with the idea of chemo, BUT, we must also be thankful that we have it as an option to consider. It's intimidating but it helps if you can focus on taking the very best care of yourself, while you're going through it and forever afterward. A good diet with plenty of rest, lots of relaxation and thinking positive is one of the best things we can do for ourselves. I'm no poster girl for L'Oreal but, fact is, we ARE worth it! Read up on supplements and natural remedies and decide, with your doc, what's best for you. Consulting with a nutritionist can be very helpful, as well and talking at least once with the treatment centers' oncology social worker, one on one.

I got through my treatments well and my check ups have all been good and I feel good about the decisions I made. I'm feeling good, am healthy and sassy and just happy to be here. I know it's a difficult time for you but you WILL begin to settle and find perspective and like so many of us, you may also find some blessings, hidden under the cloak of breast cancer.

YOU ARE NOT DOOMED! Like so many of your sisters, you're traveling a difficult road. One which all of us here either walked, crawled or ran down. Some days feeling like a snails pace...other days, hopping along like a bunny and then there ARE days when we may actually leave the ground altogether and fly. You too, Marueen, can fly. Trust yourself!

Look at it this way: 20 years ago, no one knew beans about Her/2neu. In another 20 years they'll be able to test for things we cannot now imagine. Yet, it's very safe to say that many, many women who were treated for bc 20 years ago survived nicely, although they were also Her/2neu...it's just that no one knew at the time, as there was no test for it. This has been proven in some women who've had bone mets occur 15-20 years following initial treatment...their mets were Her/2neu! This would indicate that their initial breast tumors had also been Her/2neu but unknown. A met 20 years later from a so called aggressive tumor wouldn't seem very aggressive in the big picture, I don't think. (this happend to my best friend's sister in law)

Please keep us posted and try some things which can help you to relax between now and when chemo begins. For me, that first treatment was the most scary because I had no idea what to expect or how my body would
handle it. After that, I was fine.

I wish you oodles of good luck and am sending big warm hugs your way.

Love, light and laughter,

Posts: 321
Joined: May 2002

Hi inkblot, I totally agree with everything you said here, you must be going to the same doctor I am going too...I just finished chemo 3 weeks ago, my second time around, I am doing fine also. Hugs...Emmi

Posts: 706
Joined: Jul 2001

Hi Emmi:

It's so wonderful and I'm so happy for you!
Do you live in the Northeast, by any chance?
MAYBE we do have the same doc! Ha. In which case, my friends and I will definitely corale you and drag you out to dinner! The only thing we could guarantee is that you'd laugh a lot! Ha. Once a month, three or four of us (bc survivors) get together and do something special. Dinner, theatre, go see self help guru's speak, have fun visiting an occasional "psychic", etc.. It fills our spirits up with fun and sharing.

E-mail me here and we'll see where we are geographically!

Keep up that great attitude!

Love, light and laughter,

marytres's picture
Posts: 145
Joined: May 2002

Hi Maureen, I too, had 2 tumors in one breast but mine were stage II and III. I had 8 cycles of chemo. Four heavy (not sure if it was adriamycin or what now, want to erase it from my mind) and four CMF. I had 12 postive nodes involved out of 18. I too am always afraid that it's still in me and will come back but if we live with that feeling, we don't live at all. Take one step at a time. I will be a 3 year survivor in Feb.2003. I'll be 45 in January and have 2 girls so I know how you feel. Hand in there and if you need to talk, just e-mail me anytime. Hugs, Marie

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