ER-/PR- HER2+ Recurrence Period

SpitFire · 12-27-2014, 05:21 PM

Just wondering about the recurrence period of those that are ER-/PR- HER2+. My oncologist told me that I am high risk for the next 6 years after last treatment. My OB/GYN told me that my cancer could mutate. Does that mean that I need to be on high alert for the next 10-15 years or more??

Dakini52 · 12-27-2014, 07:31 PM

I was also diagnosed ER-/PR- HER2+++. After initial treatment in 2006 I was in remission until early 2010; about 3 1/2 years. I had a chest wall recurrence, small and caught early by regular CT scans my oncologist recommended. I had surgery and radiation again and have been on Herceptin for almost 5 years now. My onc and I are talking about adding Perjeta to further protect from another recurrence. I would say that you are probably at a higher risk for recurrence, however, it may not happen. I would say continue having regular scans and stay on top of it. It is a little nerve wracking but there are lots of options out there today and more coming so live your life to the fullest. If it happens, it happens. I have been in remission now for almost 5 years and living a very normal life. I have Herceptin infusions every 3 weeks and the side effects are very manageable.

Dakini52 · 12-27-2014, 07:33 PM

I was also staged at IIB so our cases are quite similar.

Nurse4u2day · 12-27-2014, 10:25 PM

My oncologist recently told me that if you are her2 neu only that although at high risk for recurrence with in the first 2-3 years after that the risk factor decreases. All I know is that I can't control if it comes back or not but I can monitor closely and live life to its fullest at this time.

Debbie L. · 12-28-2014, 09:12 AM

Hi Spitfire. As you know, no one can (alas) tell you exactly what will happen to you as an individual person, but we can get some information from studies that have looked at recurrence rates for different subtypes, stages of disease, etc. I have a PDF of a recent study that looked back (retrospective study) at a group of women treated from 1986-1992 and compared recurrence rates to a group treated between 2004 and 2008. It clearly shows that modern treatment has reduced recurrence rates across the board.

In addition, it showed that the timing of the recurrences stayed essentially the same for the different subtypes. As in the past, the ERPR negative ones (both HER2+ and negative) had the higher recurrence rates, which were highest in the first 3 years and then fell off quite rapidly, while the ERPR+ subtypes had much less of a peak, that did not fall off so drastically.

The article discusses various limitations of the studies used, but concludes that they had large enough numbers that they feel their results are accurate.

Another topic raised by your questions is the one about vigilance or high-alertness. So far, studies have not shown that catching a systemic recurrence early improves outcome, except perhaps in the brain (because fewer, smaller brain lesions can be treated with some form of targeted radiation rather than whole brain radiation). Since HER2+ cancers do sometimes recur in the brain, it's arguable that surveillance for that would be a good thing. For the rest of the body -- it's a personal decision. Some women feel better doing lots of scans and tests after primary treatment, insisting that catching it "early" is important or that they need the reassurance of the negative tests. Others find that way of follow-up to be too anxiety-producing, especially knowing that it won't make a difference to their outcome. It's a personal decision, to be made after discussion with your oncologist. People seem to feel very strongly about follow-up styles, and quite a few change their oncologist during this period, to find one who will do more testing.

The NCCN guidelines, widely used by both oncologists and insurance companies in the US, continue to recommend only regular MD visits (medical history and physical exam), and if applicable, mammograms, as follow up for stage 1-3 breast cancer.

I can't post this article here (too long, and no attachments) but could email it if you ask me and provide your email address. It has interesting graphs. For me, a graph is worth a thousand words.

Debbie Laxague

SpitFire · 12-28-2014, 10:20 AM

Thank you all for your responses. Can the breast cancer mutate into a hormone driven one?

Debbie L. · 12-28-2014, 10:58 AM

Can the breast cancer mutate into a hormone driven one?

It happens, but rarely. More often, if it changes from the primary subtype when metastasis happens, it goes the other way (hormone positive to negative) but that is rare, too. Still, the changes (mutations or selection pressure changes) that can happen are considered important enough to biopsy the metastasis if possible, in order to make the best treatment choices when there's a recurrence. The other possible change is to the HER2 status, and I think that's more likely to be in the direction of negative to positive. Questions remain about when there are multiple sites of mets -- should all of them be biopsied, if possible (because each could be a different clone)?

The heterogeneity (mix of targets/subtypes) within tumors was a BIG topic at SABCS this year. Which leads me to a slightly OT ramble: If we're trying to use targeted therapy, and the tumors keep changing/mutating/becoming resistant, it's unknown if we could ever target enough targets to eradicate the cancer. Immunotherapy seems to care less about targets and escape mechanisms and holds the potential (not yet realized) to have a broader effect with fewer toxicities.

Maybe if you explain exactly what is your concern about this, we can try to answer your question better?

Debbie

Dakini52 · 12-28-2014, 01:54 PM

Is it really true that having a local recurrence or being Stage IV makes no difference as far as the outcome? I'm just asking because if that is the case having all these scans and brain MRI's really is a waste of time.

yanyan · 12-28-2014, 02:33 PM

My very small chest wall nodule together with one internal mammary nodule and axillary nodule were detected on PET when my skin mets progressed. Kadcyla took care of the nodules and I didn't get radiation or surgery. When my surgeon removed the affected skin with tummy flap this year, he took one internal mammy node and it was negative. Now I'm on herceptin and perjeta and I'll be on them indefinitely according to my Onco. Hoping to stay NED from now on. Like Dakini said staying on top of things are very important in both detecting and treating recurrence early.

Dakini52 · 12-28-2014, 02:53 PM

Thanks YanYan. From what I have read it does seem to make a pretty big difference between being diagnosed with a local or regional recurrence and being Stage IV. It makes a lot of difference as far as survival rates so I'm a little confused when I see a post saying that the outcomes are the same.

lkc Gumby · 12-29-2014, 07:04 AM

Hi Spitfire, My research confirms what Debbie has stated above. Hormone Negative, HER2 tumors tend to recur mostly in 2-3 yearsfollowing dx.
While hormone positive tumors can recur after many years. (My mom recurred 20 years following her initial diagnosis)
Follow up and treatment after recurrence treatment options are variable.
Let us know more if you have a specific concern that has not been answered.

Bunty · 12-29-2014, 04:26 PM

Interesting discussion here, and I can contribute some 'real life' input. I was originally diagnosed 14 years ago ERPR negative, HER2+. Seven years later I recurred in my lungs, (the original tumour was tested again at this stage, and it showed this profile, although with better testing of HER2, it showed very strong presence of HER2+). and a few years after that to my liver. I had fairly good response to chemo/herceptin a few times. However, because of the liver tumour being 'stubborn', I had it surgically removed this year, and the pathology showed that the tumour had changed profile to very strongly ER positive. So definitley it can change profile, but it is unusual. Possibly that is why the liver tumour was so stubborn because we were not fighting it with an inhibitor as well. It's now the protocol at my hospital that all new mets are biopsied (where possible), but when I recurred this was not the protocol. I'm now on Tamoxifen and Herceptin, so I hope that works as a good combo for me in staying stable.
Cheers Marie

Debbie L. · 12-30-2014, 09:20 AM

Is it really true that having a local recurrence or being Stage IV makes no difference as far as the outcome? I'm just asking because if that is the case having all these scans and brain MRI's really is a waste of time.

Dakini52, I don't think this is true (same outcome), and am not sure what you saw that made it sound like it was. Watching the brain is probably ('don't think we have good evidence, just using logic) not a waste of time, as if there were to be a recurrence there, treatment is less toxic if it is found while there are fewer and smaller lesions, for example. The body scans (whether to do them and their frequency) are a matter of personal choice. Some are comforted by the idea of jumping on anything that shows up as soon as possible, while others prefer to avoid scans unless there are symptoms. There are several reasons for choosing the second approach, including that outcomes seems to be similar (whether a recurrence is detected by scans before symptoms or with scans done FOR symptoms), that waiting for symptoms gives longer periods for enjoying life without anxiety, and that it doesn't use up the tools (treatments) in the toolbox as quickly. Like many of the decisions we have to make, this one seems to be an individual one -- probably no single "right" answer. Does this make sense?

Debbie

Lauriesh · 12-30-2014, 09:46 AM

I think the confusion is that " catching it early " is referring to stage 4 , and that catching liver mets for example, when they are 1 cm compared to 3 cms doesn't improve survival rates. It is more imp how you respond to treatment.

I don't think that anyone is saying that there is no difference between survival rates between a local recurrence and stage 4, which obviously there is.

Aure

Dakini52 · 12-30-2014, 01:26 PM

Debbie, I have talked to my onc about this and he does not agree that there is no difference in catching a recurrence as a local or regional recurrence versus Stage IV. The treatment is very different for local and Stage IV recurrences. So I think for now I will continue monitoring. I will deal with local recurrences rather than risk waiting for symptoms and finding out I am stage IV. I do agree it is a personal preference and each person must make their own decision.

Dakini52 · 12-30-2014, 01:27 PM

Lauriesh, I totally agree with your comment.

Dakini52 · 12-30-2014, 01:36 PM

Lauriesh, it is so interesting that we think we're saying the same thing when in fact we're saying something totally different. Thank you so much for helping to keep us all on the same page. I can totally see why catching Stage IV early or a little later would not make much difference at all. Guess that's why I continue the scans; they worked for my local recurrence and since I've had one I know that more are possible and it is reassuring to me to get the brain MRI and scans every 6 months.

Dakini52 · 12-30-2014, 03:33 PM

Here's the link to the NCCN breast cancer guidelines. Pretty informational and
addresses each stage individually.

http://www.nccn.org/professionals/ph...nes.asp#breast

lkc Gumby · 01-06-2015, 10:38 AM

Oops I for got to add that "er pr neg and her2 pos tumors typically tend to recur 2-3 years after systemic chemo and Herceptin". sorry..

both txs makes a big difference

Rolepaul · 01-06-2015, 02:42 PM

Detection may occur at any time, but detection just means that is when it WAS found, not when it could have been detected. Nina had a 6 cm brain lesion that was found two or three years after stopping treatment, but it probably was an issue within a year after stopping treatment. I would say that doctors should look at the brain if there is non-local mets, or greater than 4 positive lymph nodes. After four or five years, the risk of additional disease is pretty minimal.