Do all HER2+ eventullay metastasize?

eileen · 03-16-2007, 11:20 AM

I was diagnosed in 10/04, had a lumpectomy in 11/04; stage 3, her2+ with 7 positive nodes; chemo, radiation & herecptin in 2005 & am taking arimidex. I Currently there are no signs of cancer & I feel good physically. I am terrified that my cancer will return or spread to my other organs. Does anyone know if all her2+ cancers with node involvement eventually spread? I had the best possible treatment and am wondering if there is anything else I should be doing to prevent my cancer from spreading?

Eileen

Becky · 03-16-2007, 12:10 PM

Absolutely not and the use of adjuvant Herceptin puts you on the same playing field as those who are the "regular" ER/PR+ but not Her2. Her2 has more chance of a relapse but Herceptin evens out the field.

I have ER/PR negative friends in my local bc support group. One had 14 positive nodes and the other 9. The one with 14+ nodes was cancer free for 16 yrs and passed away from heart trouble recently. The other with 9 nodes is at 20 yrs. Both admitted that they might have been Her2 but they didn't test for it then. In any case, they might have even been triple negative (this also doesn't have good prognistics) and they are here and so will you.

Continue to take care of yourself and walk or exercise. And SMILE as much as you can.

Have a nice weekend

KellyA · 03-16-2007, 12:16 PM

Becky,

I just have to tell you how much I love reading your posts and seeing your cheery face on this site. :-) In addition to being very knowledgable, you are always so positive and upbeat and just OOOZ happiness. You always make me smile. Thank you.

Love, Kelly

Mary Jo · 03-16-2007, 12:28 PM

I agree with Kelly. I love reading your posts. You are a wealth of knowledge and your positive attitude is contagious. It's nice having you back. Have missed your posts on here.

I posted something a few days ago titled "could you please explain" that I would appreciate your response on.

Hugs and smiles back at ya becky.

Mary Jo

eric · 03-16-2007, 08:00 PM

I triple that Kelly! You're wonderful. Eric

Andi · 03-16-2007, 10:33 PM

Make that a quadruple from me!

Hopeful · 03-17-2007, 06:27 AM

Eileen,

I think sometimes we get a distorted view of the relapse situation from this Board, because so many of the people who post have recurrences. It makes sense that the people with recurrences are the ones actively sharing information about treatment; those without recurrences are not as likely to need the resources provided here. Plus, if Becky says it, I know it must be so.

Take heart. They say the greatest risk is in the first two years, and you seem to have passed with flying colors.

Hopeful

Becky · 03-17-2007, 08:14 AM

After reading Hopeful's post, she summed up everything wonderfully. I will admit that I also get anxious about this disease. However, as Hopeful has said, those that post include the newly diagnosed who don't know what to expect and those that have metastatic disease. I have been part of this board for over 2 years now and have seen many members not return after adjuvant therapy is over. Therefore, we don't see all the women who are doing so well.

There are several reasons I stay with it. This site is the best in keeping up with continuing and cutting edge research for Her2 and targeted sites in general. This is one stop shopping versus surfing the web yourself all night long. Also, everybody here really cares about and likes each other. Also, there are enough of us to say that we have really seen it all (and can allay one another's fears about aches and pains that are usually about something else other than cancer).

I continue to do well and statistically, I should continue to do so. Sometimes I get scared when someone on the board who did not have cancer as bad as I did becomes Stage 4 but I stick with it because people like Lolly, StephN, Sheila, Sandy H, Rozebud, Alaska Angel, Lisa, Joe, Christine and others were here when I was diagnosed, getting treatment and fighting hard for adjuvant Herceptin (because the trial wasn't completed yet and it wasn't available). These women (and those who no longer visit the board), dragged me through and gave me courage (to get a new oncologist, get Herceptin among other things) and I feel very commited to helping others do the same. I always was positive only because you only have one life to live and you might as well be as happy and productive as possible no matter what (because in reality - nobody gets out of here alive so we are all on equal footing anyway).

So smile as much as you can

eileen · 03-17-2007, 08:49 AM

Becky, Hopeful...

Thank you for your support. Guess I'm having a bad week.
I was told by the genetic counselor that I have the brca gene (even though I tested negative) & was also offered to go on the vaccine clinical trial. Too much information for me to handle in one week. I'm just overwhelmed.

Eileen

Carol Carlson · 03-17-2007, 06:02 PM

Becky,
You are indeed a ray of sunshine. Even though I'm older than many of you ( 66 ) , I feel and act as though I am years younger ( NOT TO MENTION HOW YOUNG I LOOK !!!! ) I am a 3 year survivor and plan to spend many years enjoying my family, particularly my beautiful granchildren.
The year 2004 was a rough one with 2 surgeries , chemo and rads plus 1 year of herceptin which ended in May of '06.
I feel good, look great ( ????) and keep my sense of humor very active. God knows whaI I would have done without it......
Love to all and thanks, Becky
Carol

Catherine · 03-18-2007, 08:31 PM

Becky and others,
Thanks for putting things in perspective. Early on when I joined this site, I had the impression that I could expect a reoccurrence. Rhonda H and a few others answered personal posts and helped me get a better prespective. I just completed my 4th treatment of Herceptin. I asked my onocologist what my odds were. He said that at the end of one year of Herceptin,the odds of reoccurence decrease to 10-12%, if he understood my question and if I understood his answer correctly. I can live with 10-12% chance. Do you think this is accurate? When I first came to this site, I would leave scared. Then I started figuring out that others who were 2-5 years survivors were maybe no longer coming to the site. So thank you to the long-haulers who are NED and still sharing their wisdom. I feel great and worry less and less about a reoccurence. You have all helped me tremendously. I refer to you as my HER2 girlfriends when I relate stories to my family and local girlfriends.

Thanks and blessings to all and to all a good night, Catherine

ExpectAMiracle · 03-18-2007, 09:36 PM

I am new to the HER2 board. I have posted only once, in the Welcome Wagon section. I also had questions about the impact of being HER2+ in the long run, especially if you get clear margins and negative nodes with lumpectomy. At first, it seemed inevitable that you would have a recurrence or mets if you were HER2+. So many of the wonderful ladies that post here seem to have mets of some type. It was great to read in this thread that there have been success stories and that some of those women no longer post here. I am so appreciative of all of the special ladies that continue to post here and provide information to the newbies like me.

I had a lumpectomy on 3/7 and 5 of 5 nodes were clear in the OR. I am waiting for the full pathology report from my surgery now. I was supposed to get the report at an appt. with my surgeon this past Friday, but she was out with strep throat. I hope to find out more in the next day or two. For me, the hardest part of this journey so far is the waiting. It seems I am always waiting for something. That part doesn't get any easier, does it?

May God bless each of you in this sisterhood.

Love and prayers,

Susan

MJo · 03-19-2007, 07:25 AM

Becky -- I am interested in what you said about your support group. Did I understand correctly that the long term survivors (20 years) were still participating in a BC support group. I love my support group but ask myself if I will belong there as I become a long-term survivor.

Diane H · 03-19-2007, 07:49 AM

A big thank you to Becky and Hopeful and everyone else... it's wonderful to come here and give my spirits a boost, Health and Happiness and of course hugs to all, Diane

suzan w · 03-19-2007, 08:02 AM

When I first found this site, I was newly diagnosed and had a million questions. Thanks to so many of you, I found answers here. When I feel like my oncologist thinks I am asking the same thing over and over again expecting a different answer, I can come here and get so many different perspectives. There is nothing more important to me than getting answers, information and SUPPORT from women like us, who have been through all these treatments, fears, etc. Cancer is so scary and unpredictable. Friendship and caring can get us through so much! Thanks Everyone!!!

caya · 03-19-2007, 08:24 AM

I would like to reaffirm what everyone is saying - this board has been so helpful and supportive to us "newbies", especially because we are HER2+, which we all know is a more aggresive cancer. When the onc. first goes over your pathology, and treatment options, it is all so overwhelming, especially because we are in a state of shock and for many us, terror - enrolling in oncology 101 was certainly not on my list of "things to do" - but here I am - and I am so thankful for the women like Becky, Sheila, Rhonda H, Sandy H, and others who are still on these boards with new treatment updates, etc. and general encouragement. I certainly appreciate it.

Thanks again,
caya

rinaina · 03-19-2007, 05:00 PM

I ditto that Caya!

SherryG · 03-06-2008, 08:08 AM

Becky,
Thanks for being so positive. I am a newcomer who was just diagnosed 10/07 with HER2+, Stage 2, No nodes involvement. I have finished 4 months of the tough chem and am now undergoing 12 weeks of Herceptin and Taxol, followed by 10 months of just Herceptin infusions. I, too, am terrified that this cancer will return, but your message was so uplifting. It gives me hope that I will have 16 to 20 years of cancer free life. Thank you for being a positive voice for the fear so many of us have.

God bless you and please stay on the boards....we need you,
SherryG

DonnaD · 03-06-2008, 08:33 AM

Eileen,
We all have bad weeks. That is why this site is so important, whether you have had a reoccurence or are dancing with NED others really understand. I agree with Hopeful, many who are NED are busy getting on with their lives. That is one reason I try to stay active on the site. So many have helped me during the last 19 months I hope in some small way I can help others. My mission is to tell as many people as I can about this wonderful site and all the knowledgeable sisters we have here.

Take a deep breath and let the information your just rec'd settle in. If you have any questions about your most recent results and options ask away. There is someone here who will be able to help!

I finished treatment in Dec. I still think about a reoccurence but not nearly as much as I did last year.
Look at you, you are 3+ years out. You are doing great!
Donna

goops · 03-06-2008, 05:31 PM

Quote:

Eileen,

I think sometimes we get a distorted view of the relapse situation from this Board, because so many of the people who post have recurrences. It makes sense that the people with recurrences are the ones actively sharing information about treatment; those without recurrences are not as likely to need the resources provided here. Plus, if Becky says it, I know it must be so.

Take heart. They say the greatest risk is in the first two years, and you seem to have passed with flying colors.

Hopeful

I agree that sometimes we get a distorted view from this board. When I first came I went into shock over the number of stage 4 woman who started out stage 1 or less. But then I realized that a lot of those woman did not have Herceptin available until after they had mets - and I also realized that the people who are actively being treated for cancer are much more likely to post and stage IV people have a lot more challenges then the rest of us.