When do most recurrences for HER2 happen

Iamstronger

Thanks for sharing XRAY.  Love hearing these stories!!

AmyIsStrong

I saw a new onc last month (switched b/c of awful bedside manner of previous onc - and this one was AWESOME - wish I'd done it sooner).

Anyway...we talked over the various elements of my dx and tx and she said that ER+ tends to reoccur over a longer period of time (further away from dx, risk can rise) while HER2+ recurrs sooner (in the 24 month timeframe usually) and then risk decreases. But she since I am ER+ and HER2+, they don't know WHICH triggered the BC, so they cannot know which window of recurrance applies to me.  We agreed that i would stay on tamox and do all my lifestyle modification stuff and just go forward.

But I thought that was interesting in light of this discussion.

kriskat

XRAY-your post is so encouraging since our situation and stats are pratically identical-36 at dx triple positive 1 node, etc! I am so happy for you being 6 years out!! Can't wait to get there myself and u give me hope that I can get there!!!!

lago

XRAYestInMA That's awesome. You've made it past the big 5! Keep it going. Were in Boston were you treated?

Lilah

Wow so much great info here.  I just found you!  I see a lot of familiar faces.

Interesting the way some docs date from DX and some from surgery.  In my case, I had two lumpectomies before chemo and then a uni MX after... so which surgery?  I think I will go with date of DX... which is actually coming up sooner than my sig says (April 29, 2009 I was diagnosed with DCIS but then on June 3, 2009 -- the date of my first lumpectomy -- the diagnosis was changed to IDC ... I just put that down because I couldn't figure out how to put both   I like the idea that I might be nearing the end of year 2, given that the first few years are the riskiest.

I'll still be happier when I make it to 5 though!

My Onc ordered a PET Scan prior the start of chemo, due to (I think) the 1 positive node I had.  Since that scan was negative (except I guess the BC in my right breast... though actually I'm not sure if it wasn't already gone by then as it was after my second lumpectomy, which had 3 clear and 1 close margin).  But since MX (which showed no more cancer remained in the tissue) she has said there is no reason to do more scans, so I am just given blood tests (and of course she checks me physically).

mikamomof3

Wow, this has been so informational!  I was just diagnosed and after biopsy came back ER/PR - and Her2/neu FISH positive (FISH is actually the name of the way they perform the test vs. IHC which gives you the +'s) anyway, I just wanted to have surgery as quickly as possible so I had a lumpectomy a couple days later.  They removed 3 nodes and placed a port during the surgery.  I had one come back positive.  I have no family history, single mom (ex is getting re-married next week) so I am now reading anything and everything I can!  I also have lymphovascular invasion, Ki-67 is 30%.  Got my lumpectomy report from surgeon and he said he got clear margins, but there were precancerous cells noticed.  What does this mean?  I kind of spaced and wrote down, DCIS and multi-focal that were brought up but I missed the context - I'll ask that when I see him in a week. 

Now, I was more of a "let's get moving" person so my first meeting with the oncologist is actually Friday the 13th!  Surgeon did send my path reports to inquire about a port for chemo before surgery - which he said to go ahead and put in.  If the tumor had Her2 + cells does that meant that I have them everywhere?  My surgeon initially said lumpectomy (small size, nearer surface in good spot), chemo, radiation and herceptin would be good path for me.  Now that there are other pre cancerous cells, wouldn't they possibly be in both breasts and with the Her2 +, aren't I at greater risk of it turning into IDC?  I also saw where a couple people have had or are having chemo and then a Bi-lateral; I feel like maybe I should go with this option too so I would love to know how it worked out or what helped to make that decision.

 Didn't mean for this to be so long winded.  Happy Mother's Day to all you moms out there and thank you so much for your wonderful information and inspiration!

lago

mikamomof3 My large tumor also had less that 25% of DCIS (some call precancer) but they didn't include that in the measurement of my tumor. My other breast had a small amount of LCIS (called precancer). If there wasn't anything in my other breast my BS would not have recommended the BMX. The breast with the large tumor had to be removed because the tumor was so big and my breast wasn't.

With lumpectomy there is a higher chance that the cancer might reoccur in the same breast but your survival is the same. Basically they will be watching you and if it does it will be removed proto before it gets a chance to spread.Typically the radiation treatment prevents this from happening.

As far as the other breast, if you get breast cancer there then it's not a recurrence but a new breast cancer. Since you have had a diagnosis the chances of that happening are 4X that of a women that hasn't… which means someone your age/history without a diagnosis might have a 2% chance of getting breast cancer. Once they have had a diagnosis then they have a 6% chance of getting a new breast cancer. Hope that makes sense.

suemed8749

Hi mikamomof3: So sorry you have to be here, but this is a great place for info, inspiration, and also to vent when you need to!

Do you have Her2+ cells everywhere? In an ideal situation, surgery left you cancer free. But in case you do have circulating cells that spread before your surgery, your onc will give you chemo and Herceptin. Since you had a lumpectomy, you'll probably also have radiation in case any cancer cells were left in your breast.

I am also ER/PR- Her2+ and went through chemo and a year of Herceptin in 2008 and am doing great 3 years later.

Let us know how you're doing - wishing you all the best -

Sue

lago

mikamomof3 looks like you will be eligible for the Neratinib which is in it's final stage. You might want to ask your onc about that too. I was ineligible because they changed the parameters. You need to have at least 1 positive node. Here's the thread: Neratinib Clinical Trials

suzieq60

Amy - I read an article that said ER+ HER2+ cancers have a longer time to recurrence - 5 years or more. I'll see if I can find it.

Sue

Lilah

Suepen -- I think it's ER/PR that have a longer time... HER2, as I understand it, is less likely to recur as time goes on.  The first few years after diagnosis/treatment being the riskiest time.

omaz

My onc PA said around 2 years is a critical time for recurrence for me.

suzieq60

I found the article

http://www.springerlink.com/content/f04762h23lk6j8n5/fulltext.html

MaiTai

Suepen,

 I went over the article very lightly, but I think it is important to note that of the 269 pts, the 5 that received traztuzumab (herceptin) were excluded.

Since Herceptin changed the "rules" I'm not sure this article applies to those of us that did get it.

omaz

I found this article about recurrence for the different subtypes of ER/PR/HER2 interesting. It is based on a large population.

lago

Omaz the link won't open. What's the name of the article. Maybe I can google it

omaz

Try it again Lago 

Scrabblelady

I have a basic question. When you you start counting the years?  From the dpoint of diagnosis?  Or  when your treatment ends?

lago

Thanks all working now

omaz

I like the emoticon with the regular glasses on but they don't have that here. 

Lilah

OK so I read the abstract you posted Omaz.  Do I read correctly that they are saying that if you are ER negative you have a greater risk of recurrence at 5 years or more than if you are ER positive (regardless of HER2 status)? 

omaz

Lilah - I am no expert!  I think you have to figure out which category of risk you fall into depending on their criteria and then see how that category compares to the others.  Remember though I think herceptin wasn't available for treatment of early BC until 2006 so I don't think very many of the women here got herceptin.  As someone else pointed out, already the results of this study have to be seen in the rear view mirror!

lago

Lilah the way I understand it (and from other reading too) is if you are ER-/PR- your risk is higher in the first 2-3 years for recurrence but then drops off. The risk of recurrence for ER+/PR+ is longer term. Remember that most ER+/PR+ are taking some kind of hormone therapy for the first 5 years. Yes according to the article ER-/PR- is more aggressive but seems like more likely to reoccur early rather than late.

There is so much more to consider though. I mean in my case yes I am node and LVI negative but with such a large tumor (5.5cm invasive part only) my risk goes up. The numbers your onc gave you are more specific to your situation. These studies, although informative still don't break it down into all the specifics.

Bottom line is you are about to hit the 2 year mark… that is huge for you. Hope you have a fun celebration planned.

omaz

Thanks for explaining Lago!

zlota

Hi Ladies,

 First of all thanks to all of you long time survivals for posting. It always makes me feel so much better. Being her+ is sooo scary to me and I guess all of us but you are out there healthy and happy.

I've been on Herceptin only since February, after 6 rounds of TC and mx and was wondering if any of you have muscle aches/ bone pain ( hip). I was stage 1 and had PET/CT 6 months ago, all negative but I worry that maybe these aches and pains are cancer spreading, can't shake this feelng off. I spoke to my onc and she said that I should wait and see, don't want me to get a scan yet. How long before I stop thinking CANCER for every headache, cough and joint issue.

So sick of this

lago

Zlota I was pretty stiff after chemo. I did lots of stretching to work it out. It could be left over chemo issues too. Takes time to get out of your system. There are women that do complain of all sorts of aches and pain on Hercepin. You are not alone. Check out this thread:
HERCEPTIN - QUICK SIDE EFFECTS POLL

I personally refuse to think every ache and pain is mets. I recently got this nasty case of shingles. My first reaction wasn't "skin mets" although one gal who got it here thought that. Our bodies have been through a lot. It takes time to recover. I have been through a couple of scares with several people on this site in the past few months. Their headaches were not brain mets and their bone pain was not bone mets. Don't let this disease drive you crazy. You don't worry about a heart attack when you feel heartburn. Keep on reporting your issues but as long as you're being watched you should enjoy your life. 

Stage I no nodes you still have the odds on your side… and still being on Herceptin is a good thing to prevent mets.

omaz

zlota - I am about 5 months out from chemo and my daughter informed me last night that I smell like I used to smell again.  She said during chemo I smelled like chemo and apparently it has taken a long while to get out of my system.  Like lago I was very stiff but after many weeks was able to feel stretching was relatively normal again.  Also the muscle fatigue  faded with time.  I still have some joint pain, mostly knees, but that may be due to chemopause I don't know.

Lilah

Iago -- thanks.  I did not notice the date of that article... my bad! 

Yes it has always been my understanding that HER2+ (and ER/PR negative) has the greatest risk of recurrence (even with Herceptin) in the first few years post-diagnosis/treatment... and at 5 years the chances go way down.  Also that ER/PR+ is higher at 5+ years.  So that is why that article confused me. 

Personally I wasn't even sure which group I belong in since MOST of what they called "intermediate risk" had no positivenodes (where I had 1).  But most of those in the High Risk group had 3 or more positive nodes.

It's so confusing.  I think I am going to stick with: the longer I live, the better my chances that I won't have a recurrence   I am at two years since first diagnosis now and seeing my Onc next week, whom I will grill as to where exactly I am in the continuum (not sure whether she counts it from diagnosis, chemo or surgery). 

Zlota -- I had some neuropathy from the Taxol and that abated within a few months of finishing Taxol.  Then a few months after finishing Herceptin I noticed that I felt, overall, much better -- less achy, no more crusty nose, and more energy.  All of the SEs from Herceptin were subtle but, once gone, I really felt the difference. 

omaz

lilah - I am glad to hear about the herceptin.  I perceive the SEs as subtle as well and it is good to know that they go away.  I'm sorry if the article was confusing.

Lilah

Omaz no need to apologize!  I mean, it says "results of 2007" study (which I saw but did not comprehend -- not enough coffee this morning ... so clearly the women in the study were treated and watched at least 5 years before / up to 2007 and very likely did not get Herceptin for HER2.