HER2 Positive-anyone 10 years out?
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Hi ladies,
I was wondering if there are any women out there who are 10 years or longer with her2 positive breast cancer? When I was diagnosed in 2008, my prognosis said '80% chance of no recurrence in 10 years'. Wondered what they based this on, as I have yet to talk to anyone past 6-8 years and they seem to have had recurrences because they weren't on Herceptin.
I would like SOME hope that this thing can be beat.....and would love to hear from anyone who has been dealing with this thing for 10 years and are still alive and kicking.
tuckertwo
I have not put my dx in profile yet so will type it in here:
Dx: Aug 2008 50% IDC, 50% DCIS right breast only, 2.1 cm, grade 3, HER2 positive+++, ER weakly positive, PR negative, double mastectomy Sept. 2008, began TCH November 08, finish Herceptin Oct. 2009. One year NED!
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I know of a woman with mets (Her2+) who is over 10 years out and doing fine.
Re: Early stagers. Since this drug was just approved for adjuvant treatment in 2006, no one really knows the long term results. I think oncs just assume that we will follow the course depending on our hormone receptor status - similar to our Her2- sisters. So they tell the HR- that after a few years they are clear, and the assumption is that HR+ always have some risk.
Now this is the good part for HR+ Her2+ early stagers, I have found a small study that looks at Her2+ HR+ for many years out (I think 15, I'll have to check when I get back to the office). Anyway, in this small study Her2+, HR+ stopped recurring after about 5 or 6 years. That is totally stopped recurring, not one (but like I said a very small study). These women were treated with tamoxifen only - no chemo no Herceptin.
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orange 1, thank you for responding. Don't know why this didn't show up in my inbox? Where do I find replies?
I'm getting a little wiggy and will cling to any shred of hope.
I would like to see the study you are talking about.
I am only weakly ER positive and am trying to decide if 4-6% benefit being on Tamoxifen/AI's would be worth it.
Hope to hear from lots more ladies...
That word recur has me in knots. I can't imagine living with this fear and not knowing when it might strike again.
You said your friend is 'doing fine'. Does she have good quality of life? I can't see living from one tx to the next. Seems like it would be constant pain and managing side effects from drugs. Is that true?
Many questions....so glad you guys are here.
tuckertwo
Dianne
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Was only diagnosed grade 3, her2 positive in April have only had 2 lots of chemo, but my oncologist, told me with this breast cancer it has a very high risk of recurring
Jan
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Hi. I am 5 1/2 yrs after chemo and have had no recurrence. I had 4 rounds of a/c. No herceptin because it wasn't approved yet. I am er+, pr-. Her 2 +++, grade 3, nuclear grade 8, 1.7cm tumor, no nodes (4 sentinel and 8 regular). Very high risk of recurrence they say. I had 10 months of tamoxifen and switched to arimidex. Onc still sees me every 6 months. Have 2 oncs. One likes to do yearly brain mri because he says it likes to recur there mostly. Other onc says I will be on arimidex indefinitely. My advice....don't get too wrapped up in the fear of recurrence. Live every day to the fullest and don't waste any time frozen in fear of recurrence. It took me a year to learn that. Wishing you many healthy years.
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Hi Tuckertwo,
I guess they simply don't have the long-term data yet.
Hi Orange, I would like to see the study too if you have it available. (Bre, my fear of recurrence is still alive and well - though your advice is excellent of course.)
Best, Helena.
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Also wanted to say that if you are weakly ER+, you should probably consider taking tamox or AI. I think you should try it and see how you tolerate it. What does your Onc say?
-Helena.
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Sorry, the chance of recurrence is also tied to your ER/PR status. For those of us ER/PR -, our HER2+ status ceases to be a factor after 3 - 4 years after surgery and we have the recurrence rate of our triple neg sisters, (close to zero at 5 years, basically considered "cured" at 8 years).
For ER/PR + ladies, your recurrence rate is the same as any ER/PR+, HER2- patient after the 3 -4 years.
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Sassa -
Can you cite a study that supports this? Thanks.
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Re - the study I spoke of a couple of posts ago. If you would like a copy - please pm me with your private email address. I will scan it on Monday and send it.
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It would be great to get lots of posts in response, but as Orange1 says, unfortunately testing wasn't done for HER2' positives 10 years ago. There are a handful who were part of the very, very early research about it and trastuzumab back then. So don't be at all discouraged by the lack of posts from those "ten years out". I'm one of those who "missed out" on trastuzumab and have never had it and am doing fine.
Orange1, could you post a link for the study you mentioned?
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I think AA is right one thing to look at is there are many many many women who has a later stage HER2 BC with many nodes that are doing just fine and NED after A year of Herceptin over 5 years ago.
The data illustrates that if HER2BC is untreated with Herceptin or prior to it being available most recurred in the first 3 years. Now you have so many so far out that have not and their cases were quite poor in prognosis. I have 2 lady friends here in AZ (actually the only ladies I know personally with HER2 other than me) and they were both dxed in 2004 and had serious stage 3 cancers. Golf ball size tumors and in excess of 5 nodes positive. They are both Cancer free 5 years later.
Then there are also the women like AA and there is another lady on these threads I am thinking of I think it is BRE (excuse me if I am incorrect) that have been just fine for 5 plus years with no Herceptin etc.
Things are good and we must keep the faith. My ONC tells me has not had one stage 1 lady fail yet adjuvantly after Herceptin and most not fail stage 2-3.
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HI! I have just been diagnosed HER2 positive, but my onc explained something interesting. He said HER2 is an "impatient" form f the disease, because it is fast growing and agressive. This means that it is most likely to recur in the first 2-4 years. If it hasn´t by then, it probably wont. If you look at statistics, the chances of recurrence in HER2- increases with the years, but it decreases for HER2+. What he said sounds coherent with sassa´s post.
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Tuckertwo...first remember that many users of this site trickle off to live their lives, never using this site as they continue on with their NED lives. It is unusal to see a poster here for 10 years...not because they are dead...but because they are not on the site.
Second herceptin only began to be used widely 4 years ago for early(less than stage4) BC. So you will find no one in your circumstance who benefited from herceptin 10 years ago.
Third...as Herceptin wasn't used for early BC, many women prior to 4 years ago were not even tested for the Her2 marker.
This week I become a 4 year survivor of the beast. After finishing all my treatment I spent a fair amount of time worrying it didn't work and trying to figure out if I would die despite all I had done. I did what you are doing...looked for others with the same stats, researched the heck out of the statistics. There is no answer. Each person is an individual and your individual statistic is either 0% or 100% for getting it all back. There is no marker for WHO that person will be.
Then someone asked me WHAT I would do differently? I had the answer to taht....not much. I still had to raise my children...to do that I had to continue working, get up each day and do my best to live today. Just because I might not make it doesn't mean their lives should stand still. So slowly I regained my strength, went back to my job and started thinking that tomorrow will come. And it did.IF my cancer recurs ,I will give the fight my best shot.
Many women on the mets board suggest the same thing...they wish they had enjoyed their NED time, as when recurrence happens there is nothing that can prepare you for it.
It seems we have little control but throwing the best medicines of the day at the cancer...so ..do it. My best to you....but don't worry if not many 10 year survivors show up.
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Thanks Marianne,
I love your kind posts. My Herceptin treatments are coming to an end soon and I have to admit I am feeling a bit nervous lately about losing this security blanket. I should print out your post and read it once a day!
Helena.
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Maryanne, thank you for this post. I am newly diagnosed and nervous. Still figuring out what all this means. Your Dx is very similar to mine so this is doubly encouraging.
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Hi Tuckertoo, I forgot to respond to part of your post. My friend who is over 10 years with mets gets only herceptin every three weeks. This seems to be holding everything in check for her. I don't ask her about scans, etc., because she is very private and doesn't like to discuss it much. She seems to be living a perfectly active, normal life.
Unfortunately, with mets, not everyone is so lucky. I guess that is why we are all obsessed with recurrence.
Best wishes for all of us dealing with our fears and somehow making peace with our condition. I hope we all can get to a place where we can enjoy life without the cloud constantly hanging over us.
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Hi orange1,
Thanks for the posts. Yes, I would be interested in reading that study you mentioned. I don't know how to PM you; I tried looking at your profile but there was no place to PM.
Thanks
tuckertwo - Dianne
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Thanks Amy and Helena, I have had good support from those ahead of me on this site and in my own community. I am always happy to add an encouraging post...lots of time this disease is SOOO discouraging. I used to love reading posts of NED survivors with my stats when I was first diagnosed...so I am paying it forward...I hope you will do the same.
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Hi Tucker,
On the left side of the page where it says Orange1 with the word "chicago" underneith, click on the word "Orange1". That will get you to my profile. Towards the top right of my profile there is a line that says "send a private message" click that line.
All you relative oldtimers (with BC). Thanks so much for posting.
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I will see if I can post a link to the study. Not sure, because much of the stuff I find comes from journals that require a subscription (which I have through work.) If I cannot manage to link it, I will email scanned copies.
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I am only 14 months out with stage IV her2+, but I have read posts from the founder of http://www.her2support.org/ - she was diagnosed in 1999 with mets to the chest and 3 brain tumors. She is her2+ and was treated with Herceptin. Also, gamma knife and WBR. As of the post I read 07/23/09, she has been in remission since the summer of 2001! An amazing example of hope for us all!! lisa
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There are also a bunch of woman on the www.her2support.org who are many years out I can think of one who is 9 years out I worry about reoccuring everyday but I am hopeful that I have done everything in my power to keep the beast from coming back. I plan on being an old lady (I am 32) and enjoying all that comes with it. 0
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I know someone who was in the original her2 trials in 2000 and she is very well, and living her life as normal.
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From:
Ki67 Index, HER2 Status, and Prognosis of Patients With Luminal B Breast Cancer
Maggie C. U. Cheang, Stephen K. Chia, David Voduc, Dongxia Gao, Samuel Leung, Jacqueline Snider, Mark Watson, Sherri Davies, Philip S. Bernard, Joel S. Parker, Charles M. Perou, Matthew J. Ellis, Torsten O. Nielsen
JNCI Vol. 101, Issue 10, May 20, 2009
This study applies to hormone receptor positive breast cancer (HR+ BC) only. It does not discuss HR- BC at all.
Background: This study was done to try to develop a prognostic tool for HR+ breast cancer. The samples were taken from tumors before Herceptin was available for adjuvant use.
The graphs below represent women that were treated with only tamoxifen, no chemo and no herceptin.
Graph C shows that for node negative women with HR+, Her2+ BC (called "Luminal/Her2+" in this article represented with the blue line) no patient out of 22 possible ("at risk") had a recurrence after 5 years.
Graph E shows that even for women with node positive HR+ Her2+ BC ("Luminal HER2+", also blue line), there were only about 2-3 recurrences out of 51 patients at risk had a recurrence after 6 years.
If you visually subtract out the early recurrences, our long term prognosis looks excellent. Recurrence is further controlled by chemo and herceptin.
This study has only small numbers of Her2+ women, so it is certainly not definitive, even so, it looks very promising to me.
This article also lends support that tamoxifen is effective for HR+ HER2+ BC (if you are an extensive metabolizer and stay away from drugs that interfere with tamoxifen metabolism).
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orange1,
Thanks for posting that study. I think a lot of us were interested in it.
Tucker2,
Youmentioned that you were only weakly estrogen positive and unsure of whether to do the tamoxifen. I'm in the same boat---weakly estrogen positive and my onc has recommended doing the tamoxifen, not solely for the purpose of the primary tumor, but she seemed to think it would benefit the cancer-free breastand keep it from developing a cancerous tumor. I never know what to believe or trust, even when the info comes from an oncologist!
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Tucker and Weety
When you say weakly ER positive what percentage are you looking at from path report as I also am weakly ER positive and trying to make decisions.
ORANGE sorry for my ignorance but what does the side of the graph represent, I understand the horizontal "years" but what is the vertical side number (.2,.4 etc) represent?
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mmm5, my path report did not give the percentage. I will have to find out from the lab, what values they use.
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In some parts of Canada they don't use % but use 1+,2+ or 3+. I am 1+, but my Allred score was 4, out of 8. That means that my benefit would be, according to my onc, only 4-6%.
That is not - to me - a huge benefit, considering the side effects. I already tried Arimidex and was awfully nauseated for the 3+ weeks I was on it.
tucketwo
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I'm out 6.5 years, having had a year of Herceptin for Stage 3 BC back in 2004, when it was still experimental in Stage 3. I haven't been here much and am very interested in the idea that Her+ tends not to recur after 5 years--since I am happily on the other side of that mark!
What is an Allred score?
Hope M.
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mmm5 -
the numbers on the vertical axis are the proportion of patients relapse free ( for graphs A, C, and E). 1.0 means 100% are relapse-free. 0.8 means 80% are relapse free. 0.6 means 60% are relapse free.
These numbers are pretty scary because of the large number of early recurrences. No wonder chemo was automatic for us!
Just to remind everybody, these recurence rates apply to women who did not get chemo or Herceptin. Because chemo and Hercetpin are so effective, the early recurrence rate is a fraction of what it would be without chemo or H.
Sorry for being so redundant, but I want to make sure I've communicated this effectively so I don't freak anybody out.
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