ER+, HER2+ - time to recurrence?

[kcherub]

Oh, gosh. Now, I am freaked out. I never thought of my being ER+ as a potentially "bad" thing. I know that I am younger, and thus have many more years for estrogen to pump through my body. I mean, I thought that since I have a "targeted" treatment it was better. Should I be worried that just when I get to the point where I am not worrying each and every hour that it will come back (after coming off Tamoxifen for good), that it will?

I have asked my ONC. at least five times if Tamoxifen "kills" it, or just keeps it at bay. I don't think he has ever given me a complete answer. Anyone? Or has that been answered up above?!?

I had to go off Tamoxifen last week, but only for two weeks. I have been having horrible joint pain and am being treated for two bulging discs. I wanted to see how much Tamoxifen was contributing to my pain, since everything started around the time I started Tamoxifen. Now, I am worried about the two weeks off.

Take care,

[Hopeful]

Krista,

The "good" thing about the conclusion I posted above is that more doctors and scientists are focusing on ER+ patients, and conducting tests on durations of treatment, switching between agents, etc. I am sorry that the rather stark language I quoted reads so alarmingly. I think it was intended as a challenge to researchers to try to determine which paitients require, and will respond, to extended endocrine therapy, and different types of therapy. A totally unexpected finding, reported on the Board about a month ago, was a result of giving women zolendraic acid with their endocrine therapy. Here is a link to an interview with Michael Grant from the latest issue of Breast Cancer Update with very encouraging news http://www.breastcancerupdate.com/me...08/4/gnant.asp

a portion of which is quoted below:

DR LOVE: Can you discuss the dosing schedule and results of zoledronic acid in ABCSG-12?

DR GNANT: We administered four milligrams of zoledronic acid every six months, for a total of seven infusions over three years. Initially, we started the trial with a higher dose of eight milligrams monthly, but we were forced to change due to safety concerns. In 2000, reports surfaced that renal safety was endangered in some patients with multiple myeloma who were being treated with zoledronic acid, and at that point all the trials around the world reduced the dose to four milligrams.

We went back to what we believed would be mostly a bone-protection dose. Therefore, it’s particularly striking that we are not only protecting bone at this dose but that we are also keeping the cancer at bay (Gnant 2008; [1.3]).

Two more observations are also exciting. One is the magnitude of the effect: A 36 percent improvement in disease-free survival, translating to at least a non-significant trend toward better overall survival. That’s an accomplishment usually observed with interventions such as taxane chemotherapy. We observed that efficacy with an acceptable side-effect profile (1.4).
More importantly, we’re not only preventing bone metastases, but we’re also seeing benefit in various event subcategories, including locoregional recurrence, contralateral breast cancer and distant metastasis outside of the bone (such as liver or lung disease). That’s something most of us did not expect.

So, there is promise and hope - we just need to keep on top of our own treatments.

Hopeful

[Barbara H.]

I am er, pr negative. I did not receive Herceptin in 98 and it took me 6 years to recur. I thought I was out of the woods. One can never really know the future. Try to be as healthy as possible and enjoy your break from cancer, hopefully for your life.
Hope you stay well,
Barbara H.

[dlaxague]

Hi all, great discussion. So much unknown (yet). I don't want to stop the direction this discussion is taking, as I'm sure we're all learning things as we share experience and information about what is know and what is opinion re: triple positive cancer's behavior. However, I knew that there wasn't much specific evidence to allay my friend's fears about ongoing risk because of ERPR+, so I was hoping for list-members anecdotes.

What I was hoping to get: few triple positive people writing to say that their recurrence had happened more than 7 years out from primary treatment. What's the longest anyone knows of time from primary to recurrence for a person with known HER2+, ERPR+ cancer?

My friend's ERPR was high - I think one was in the 80's and the other in the 90's. And all proliferation details were very aggressive.

I understand the points made about ERPR+ disease recurring later because it's less aggressive but that rarely if ever is a description of HER2+ cancers, right?

I got a hand-me-down ipod from our son a few weeks ago. I've just discovered podcasts. I downloaded a whole slew of breast cancer ones - bcupdate, and some that say they'll summarize ASCO - called Oncology Unplugged, from the CBCE. So fascinating, to hear the studies reported of course but even more to hear what the experts are thinking, or wondering about, as they discuss the issues in a less formal venue than a presentation at SABCS. I almost missed my exit driving home, I was so intent on the discussion of that moment, which was the very one quoted by hopeful about zometa. Another interesting one was about high-dose estrogen "resetting" the receptors so that cancer that had developed hormone resistance again respond to hormonal treatment. I think they said that there is also a study ongoing that uses intermittent AI's, same theory.

Debbie Laxague

[sassy]

My former onc (I MISS HIM) was very forward thinking and stayed on top of HER2 research. He started me on Zometa as soon as possible because he was aware of the studies possibly indicating the benefit in terms of recurrance (this was in 06), then kept me on Lupron because of emerging info about the same benefit. In terms of AI's, he felt that by the time I had been on one for 5 years, indications would be that they should be continued indefinately.

We tried to extrapolate the numbers of triple positives in the bc population and he felt that around 5 to 8% of all BC would be triple positive.

I have also been interested in any info concerning triple positives, but have not found many others in this same subset.

Considering the small percentage of triple positives and the small number of early stage who received Herceptin during the trials, I doubt there are very many in this seven+ year category.

Also, prior to the release of the trial, most people were not tested for HER2 until metastisized, so would it not be most likely that those who were triple positive that did not recurr would not have known they were HER2+?

Does this make sense?

[caya]

I don't know if this will help at all Debbie, but I am also triple positive - ER+90%, PR+50% - I was node negative. I am approaching my 2 year date of diagnosis, my 2 year cancerversary will be Dec. 18th.
Very interesting discussion. My onc.sent my tumour out for testing 3 times as the first one was inconclusive, the FISH ones were highly Her2+. He still shakes his head when he sees me, because of this very small percentage of the Her2+ population that is triple+, never mind our very small subset group in the general BC population. On top of that, my tumour was also mucinous - another very small subset (like 2%) characteristic (a favourable one, more slow growing). This mucinous aspect probably had a great deal with my tumour being a grade 2.

I am hoping that being triple+ will bode well for very, very low recurrence rates - I guess only time will tell, as we get further "out".

all the best
caya

[Adriana Mangus]

Dear Friends:

When one first get tested you might be Hormone Receptor Positive, when and if you have a recurrence-after 5, 10, 20 years; your hormone receptors might be Negative.

I was dx in 1994, no Her2 test was available, but we knew I was Hormone Receptor Positive. Almost 91/2 years later I had a recurrence, I now am E,P,HR Negative..

Yes, my cancer- all cancers mutate.

Try not to spend a lot of time thinking about your cancer, be grateful for the now, you all are cancer-free. Enjoy Life.

[dlaxague]

Good morning all. We're getting off on two separate tangents - just want to clarify.

I was asking Sarah if she'd had a second opinion on her original pathology. A second look by experienced experts at the same tissue from the primary surgery. That's what I had. It was not that the cancer changed, it was that the first pathology report was wrong.

On the second tangent - yes it's possible (though not typical) for cancer to have changed status when it recurs. Most often, if there are changes, it goes from positive to negative in ER and/or PR and from negative/normal to positive for HER2. There are reports of the other way round (for both) but they are really rare and some people think when that happens, or appears to happen, that it's lab error not true change in that direction.

Debbie Laxague

[Marily]

Kristina, Hi just a quick note I had to prove I needed to get off Tamoxifin after three years. I was told this by a Dr at an ASCO meeting.. it took me a year to prove I was still producing hormone to get a Dr to do surgery to remove my ovaries. I than went to Aromasin which I was told was a safer med for me. I chose Aromasin from reading about side effects of all the AI's ... has you Dr not offered you any of these? going between the three AI 's might find you one that you can take with less side effects. for me it was a good choice. Are you still producing estrogen or are you post menapausal?
marily