her possitive and neg
can anyone explain to me what this means?? is it better to be poss or neg and what is it???
Comments
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If You're pos then Your tumor is fueled, stimulated to grow by a substance called 'human epidermal growth factor'. There's a lot of HER2 receptors (receptors of this 'human epidermal growth factor,) on the surface of Your cancer cells. 'Human epidermal growth factor' is a normal, physiological tissue hormone present in human body and plays there many many important roles, but the fact that cancer cells have to much of it's receptors is wrong.
This day its hard to say if its good or not. Herceptin has proven to benefit women with her2, many other targeted therapies have also been tested. Besides, modern chemotherapy (with taxanes) works far better for her2 positive women (than for negative). I think her2 in the present day has much lower prognostic significance
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Her2 positive isn't something you want to be. Her2 + breast cancers have a higher rate of recurrence and metastisis. Herceptin is the only drug available to target Her2+, but even those treated with it have a higher rate of recurrence and mets than women who were not Her2+.
The bigger threat is if you are Triple negative, meaning ER-/PR-/Her2- (meaning estrogen negative, progesterone negative AND her2neg) because there are really no drugs other than chemo therapy that they can target your cancer with.
You should ask your doctor to explain all of this in detail to you do that you can better understand what it all means. There are also some great resources available at Network of Strength's web site under "information", the under "Brochures and pamphlets". They will mail you anything you request (you can call or e-mail them) but some of it is available in pfd format right on the site. Check it out!
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thanks that answers my question xxxxx
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I am not really sure that Her2 positive is such a negative factor anymore (at least in early stage BC). The herceptin has knocked recurrence rates to a low level for Her 2 positive women. After 3 1/2 years - 4 years the positive benefits of the herceptin disappears and your possibility of recurrence reverts back to your hormone status.
If you are hormone negative, this means that the recurrence rate for triple negatives become important for you, for hormone positive women, the recurrence rate for hormone positive women become important.
Early stage triple negatives have the highest possibility of recurrence within the first 2 -3 years after treatment. After 3 years, the rates drop rapidly to approaching zero at 5 years. After 8 years, a triple negative is considered "cured" (i.e, chance of recurrence is around zero).
On the other hand, ER/PR positive women recurrence rates slowly creep up over time (data which was presented within the last few years at a meeting - no, I don't remember which one; no, I am not looking for it - it is on this board somewhere). Data presented within the last year has lead researchers to believe that the use of tamoxifen and AIs for 5 years doesn't stop the recurrence of ER/PR positive cancer, it just merely slows down the growth and extends the reappearance to out beyond the 5 year window.
So, if you are early stage ER/PR negative, Her2 positive, and you don't reoccur within that first 2 -3 years (when HER2 positive rates are also at there highest), you revert to the recurrence rate of the triple negative BC as the benefits of herceptin wears off.
Conversely, if you are early ER/PR positive, HER2 negative, and you don't recur within the first 2 -3 years, you revert to the increasing recurrence rates of hormone positive women as the benefit of the herceptin disappears. That is why ER/PR positive, HER2 negative women have to deal with the problems and side effects of the AIs and tamoxifen after finishing their herceptin treatment.
This information about the benefits of herceptin disappearing after 3 -4 years and the recurrence rate of your hormone status taking over was presented this year at one of the big meetings (no, I don't remember which one, and no, I am not going to look for it - the information is somewhere on this board).
Based on this data, I now wonder if the recurrence rates for HER2 positive women that as seen in the first 5 years may not be influenced by the hormone status of the BC (that is, the ER/PR positive women reoccur at a higher rate than the ER/PR negative women after the first 3 years). The original data was not broken out by hormone status as it was not known to be a factor. I wouldn't be surprised if it is looked at now based on the hormone recurrence data.
Also, chemotherapy is the most effect for triple negatives and ER/PR negative, Her2 Positive BC. As those forms are cancer are the most aggressive (i.e, fast growing with cancer cells dividing at a faster rate than lazy ER/PR positive (Grade 1) BC, and chemo is most effective on dividing cells, chemo is a must for triple negatives and ER/PR neg, HER2 positive women. I know that many women rejoice at their low oncotype scores and being told no chemo. However, what it really means is that chemo is not effective for them and they have one less weapon in their fight against the BC. The ER/PR positive women end up trying to remove the estrogen from their systems by removing ovaries and going on the AIs or tamoxifen.
Now I understand why my oncologist when I was diagnosed almost 4 years ago as ER/PR negative, told me if I was really "lucky," I would be HER2 positive. I thought she was crazy at the time.
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Koryn
Actually Her 2 is now thought of as a prognosis with less chance of recurrance (if targeted by Herceptin) Both my Onc's (one is nationally recognized from MD Anderson) state is is a more favorable prognosis. In addition there are many drugs that target Her2 now, including Neratanib, and Tykerb etc.
I agree Trip Neg needs much attention.
But, for those dxed with Her2 there is great hope and many feel blessed that they were able to have such wonderul molecular targeted treatment.
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Sassa~ Thank you I was typing up a reply but then I saw yours.
In addition there are more drugs than just herceptin for HER2. There is tykereb and neratinib along with more drugs that are coming out. Excuse my spelling but there are more drugs then just herceptin
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My onc was also encouraged by the ER/PR receptors because of the drugs to target it. Being triple positive was better than triple negative in his opinion.
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Sassa is right
http://annonc.oxfordjournals.org/cgi/content/full/19/6/1090
Read the point "DISCUSSION" from the paragraph "Our analyses provide clear evidence that hormone receptor-negativeand hormone receptor-positive diseases have fundamentally differentpatterns of relapse........"
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Thanks, Sassa! Love your comments and those of mmm5 and jamieh on this topic. I still remember the horror of my path report - "ER- = prognosis unfavorable." Ditto PR-, Her2+, 50% ki67, and some other factor I've managed to erase from my memory. Uh...so I guess my prognosis is unfavorable, huh doc???? (Oh, grade 3 = p.u. also!) Thank God for the sanity I've found on bc.org!
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I have to say, in my experience being her2+ is a good thing because so many additional drugs are available to help us combat this monster! There are also new drugs on the horizon - one being TDM1....yay!! There is another trial going on called the ALTTO trial using herceptin and tykerb (my current combination) for earlier stages to see if it can help reduce recurrence even more. It's very confusing to wade thru all this information and figure out what is what, but soon you'll have all the lingo down pat! This site is definitely an amazing resource :>
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In addition to the Her2 treatments mentioned, there are many more drugs in early stage development.
Re: Long term risk of recurrence Her2+ ER- vs Her 2+ ER+ breast cancer that has been treated with Herceptin in the adjuvant setting (non-metastatic). No one knows the long term outcome of herceptin treated Her2+ ER- or hercptin treated Her2+ ER+ because the studies only go out about 5 years. The information Sassa is referring to applies to breast cancer that has not been treated with Herceptin.
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I agree that it would be high time that more treatments are developed for triple negs.
Orange1, long time no speak!
Do you know if there are also more hormone treatments (against ER/PR) in the pipeline? I think even there it's time for something new & improved. We now only have tamoxifen, the AIs, and then faslodex. Time for something ground breaking!!!!
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mmm5, how is life? Have your skeletal pains resolved? Hope you are fine and feeling better about the whole thing.
Best,
Helena.
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thanks everyone but im still a little confused, i know there are so very many scenarios but if u were to put them in order of what u would prefer to be, ie best case scenario what order would u put it in ie best case first worse last in your opinion...
eg.... er- /pr+ her2-
er+/pr+ her2+
ect ect
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Hi, Karen; somewhere in the vast Internet world there is a table of recurrence rates reflecting some general statistics around the + and -; I remember seeing it and I'll try to find and post the link. But I think it's important to avoid good, bad and better when it comes to things like this. For one thing, the + and the - have degrees of this and that, nothing is purely one thing or another. Not all TN is the same. There are degrees of ER+ and ER-. Grade? Nodes? Vascularity? Stage? Categorizing disease has taken a new turn with Luminal A and Luminal B categories, still controversial. Nothing is straightforward in medical oncology; you play the hand you are dealt as best you can.
New treatments and combinations of treatments, your overall health and compliance with your protocol, the choices you make and your own priorities all affect your own outcomes, too. Your ability to handle the intervention plays a role. Stats are just that: chances.
I mean this all very gently. The Her2- women breathe a sigh of relief for not having that added dimension, but so do the Her2+ women, for having Herceptin and Tykerb to treat it. It's just a different sigh. Different path, different cohort, but we all have the same fear and all of us have something to celebrate and something to curse.
I'll look for the link and post if I find it; just don't put too much emphasis on these broad comparisons.
Warmest wishes for a peaceful weekend,
Cathy
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thanks cathy i know your right in what you say , i have not had my full dx yet so im not clear what i am yet i was just looking to what to hope for thats all xxx
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Hi Helena
Always good to hear from you, skeletal pains somewhat better as now I know that they are estrogen deprivation related. Its something in the knowing that makes them not as prominent in the mind. However I continue physical therapy weekly.
Hope you are well!!
You bring up an excellent point the hormonals need develoment especially since we all suffer on them so....
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Hi, Karen; I do understand--I'm a bit farther along on my journey, but recently I asked my oncologist to remind me what all the treatment had done for me in statistical terms of my future.
You will get good news, I'm sure.
Warmest,
Cathy
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Orange,
The information on recurrence that I discussed is from a new study on treatment with herceptin. The study showed that the benefit of the herceptin treatment disappears about 3 1/2 years after herceptin treatment ends. At that point, the recurrence pattern of the hormone status of your cancer comes into play.
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Sassa,
I know you didnt want to go hunting for this new study and all....but wouldn't nodal status come into play more than hormone status after the 3 yr benefit of Herceptin?
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Sassa-
"At that point, the recurrence pattern of the hormone status of your cancer comes into play."
Based on the updates to the studies I've seen (the major adjuvant studies - BCIRG006 and the combined analysis studies), it is credible that benefit of herceptin treatment is diminished after about 3 1/2 years. However, I have not seen any data supporting the statement you made that I quoted above. I would be grateful if you could please provide a source. I am sure many of us may consider the Neratinib trial if we thought our risk long term risk is significant.
Thanks so much.
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Hi Helena67,
I've been lurking round here and there. I'm too busy with work to spend a lot of time here.
Re: New er/pr drugs in development. The only one I am aware of is Mayo clinic is working on developing endoxifen as a drug. This is the active form of tamoxifen and should be active regardless of CYP2D6 metabolizer status. There could be others that I'm not aware of.
Part of the problem limiting development is the effectiveness of current treatments. Drug companies have to demonstrate higher efficacy than current therapies, or at least significantly reduced side effects. The efficacy of AI and tamox is hard to beat. For example Faslodex, a SERM (selective estrogen receptor modulator) was being tested against tamox, but the trial had to be stopped as soon as it became apparent that it was not as good. AIs diminish estrogen so low, it may be hard to go lower.
Much research is looking into extended use of anti-estrogems. There is strong evidence that longer use results in lower recurrence rates. I believe there is true of AIs as well as tamox. Right now the ATLAS trial is ongoing. Its looking at 5 years of tamox vs 10 years. Data available so far indicate longer is better for reducing recurrence, but a reduction in mortality has yet to be confirmed. A small study (~200 patients, if I remember correctly) indicated competing risks from tamox such as blood clots caused an increase in mortality relative to stopping at 5 years. However the result was not significant and the trial was stopped early, so the "data" supporting that conclusion is pretty iffy. ATLAS has 10,000 women, so the results should be definitive.
For Er+ cancer, not gaining weight after completion of chemo resulted in a statistically significant 20% reduction in risk for women that were premenopausal at the time of diagnosis.
Also for ER+ cancer, lets not forget about Zometa (36% risk reduction for twice yearly use ) and the latest big news - a greater than 50% reduction for regular aspirin use (take a look at the stage III forum for more details on this.) I believe the evidence is good enough that I am adding it into my arsenal. If you are considering adding daily aspirin you may want to consider adding a PPI (proton pump inhibitor - very effective ant-acid) such as Prilosec, Nexium, Kapiden, Prevacid, others, since regular aspirin use can increase the risk of serious GI bleeding.
Best to you.
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KarenDunn,
I am going out on and limb about your question about the "best/worst" cancer, and this just my opinion based on previous knowledge of drug trials before my retirement and BC diagnosis and new data that has since come out. Here goes:
I think that in the future, there will be a shift in the prognostic indicators at the time of diagnosis of early stage BC. As more data is collected about the long time survival of ER/PR negative women that are HER2+ and, hopefully triple negative, (the early public data that I can read now on the PARP inhibitors sounds resoundingly familiar to data that was submitted to FDA in the early trials of herceptin that I saw in my working days) and more data is collected about the long term recurrence rate (out beyond the 5 year cut off point) of ER/PR positive women, I feel that being ER/PR negative will be a positive prognosis indicator instead of the bang on the head that it now is for hormone negative women. Ditto for the HER2 + status (and hopefully, for the triple negs if the PARP inhibitors play out well).
As for myself now that I am out beyond my 3 years point of post chem (2 1/2 fears herceptin), I feel that I had the best possible diagnosis (early stage, ER/PR negative, HER2+) for not having a recurrence. My chemo was highly effective because of my grade 3 cells, the herceptin did the clean up. My oncologist was not crazy when she looked me in the eye and told me I was very lucky in being HER2+. This opinion was also stated by an oncologist I saw in Maryland who provided me with my herceptin in my frequent visits to see my daughter. He went so far as to pull out his charts and data that he had been collected and told me that he felt my recurrence chance at that point was extremely low. He was also of the opinion that in the future, herceptin treatment would not be for a year and reduced down to 3 -6 months.
Orange,
I came across the study on the ER/PR status being important after herceptin treatment fairly recently on this board. I will see if I can find it again.
Lexislove,
Nodal status? I don't know. It probably wouldn't make a difference in stage 1 or 2, more critical in stage 3.
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I would love to see this study Sassa....Ill try to look myself.
But, if you do come across it again...please post. Thanks.
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Lexislove,
I am trying to find it - no luck so far. I believe it might have been done in England (or somewhere in Europe)and was a data collection from treatment files (looking to see when recurrence happened (or didn't in same time frame) and the hormone status of the women involved. Maybe it was as far back as the conference in Switzerland last summer.
It stuck in my memory because of the statement about hormone status and I am ER/PR negative and, therefore, would fall under the triple negative statistics as time goes by.
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the St. Gallan Conference? (sp?)
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Hi mmm5,
Doing good - as far as I know. Have to go to the Onc soon again (beginning of March) so that makes me slightly nervous. But I think (hope) all will be well. I am back at work full-time, taking care of the kids, etc. I do still think that my memory and information processing skills are not what they used to be. I don't know. Chemobrain? Side effect of the AI? I feel kind of dumb but fortunately no-one at work seems to notice! LOL. Good thing we all have some reserve capacity.
Hi Orange, thanks for your answer. I too think that extended treatment will be a new standard. I wonder if they will end up doing it 'pulse like'. For example, 5 years on AI, 6-month break, another 5 years, etc.
I just started an aspirin 'regimen' last week. 81 mg 3 times a week. If nothing else it should protect my heart.
Good idea about the prilosec since we are in it for the long haul.
Best to you too - I hope you stay in touch with the boards,
Helena.
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my god i think im thick!!! at the moment im not sure where i am as far as i know i had 16 nodes removed and 8 were affected i has a 1cm tumour removed which was grade 3 i think im her2- but dont know what stage i am yet or er/pr so what do i hope to be?? er/pr poss or neg? im confused i know i should just wait and see instead of clutching at straws but just trying to get my head round it all, thanks for your patience xx
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I don't think "hoping" to be anything achieves very much-you won't know how you will respond to treatment until you have had it. What is succesful and useful for one person will be of no use whatsover to another-so "hoping" to be either her+/- is not going to be constructive for you. I would suggest that you try to stand back from it all for a while-and when you know exactly what your diagnosis is, then you can start to ask questions-and get answers which will be pertinent to your situation.Taking a step at a time is advise I always give to newbies-otherwise you tie yourself in knots-it's not easy, but at the moment you are in danger of going around in circles, and getting information which will ultimately be of no use to you.
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Hi Karen,
You are not thick!! There is not one of us on these boards that wasn't overwhelmed with all the information available and how to make sense of it relative to our own situation. I agree about trying not to worry about it too much right now (I know - easy to say, impossible to do!). After you find out about the details of your tumor and meet with your onc, you can plan the best treatment based on your situation.
What type tumor is "best" (really no tumor is best) is irrelevant because we all must play the hand we are dealt.
Good luck to you.
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