Quick Question

[Janet M]

Hello
Just a quick question. As fas as everyone knows - do all woman who are HER2 relapse so it becomes a question of when not if. Janet M

[vpfeiffer]

My opinion....because 90% or so of Her2+ BC patients are Er/Pr negative, I believe that in the past, many of these patients got Tamoxifen or something similar, and as we now know, that type of med does nothing for these type of cells. Years ago, they didn't test for her2, but many of those women are probably the ones getting recurrences. Because there wasn't anything to prevent the recurrence! One of my friends was just diagnosed at stage 4/Her2+, after being NED for 12 years after a stage 1 lumpectomy. And she didn't know if she was Her2+ the first time, but my guess is: of course she was. So sometimes the recurrence takes awhile.

The only thing out there right now is Herceptin, and that's why a lot of us are getting Herceptin as our post-treatment med. We need a Tamoxifen-type drug for our specific type of cell. It remains to be seen whether or not the recurrences will be as likely with Herceptin as a post-med. When I enter my disease stats in the recurrence probablity calculators, it shows a 95% recurrance probability (but Herceptin isn't part of that calculation). But how long will we need to be on this med, and how long will our insurance companies pay for it if we are NED? 2 years? 5 years? And then how long will we have to wait for a recurrence after that?

This is not meant to be doom and gloom, simply the facts as I see them. I continue to have a very positive attitude about my condition, because I can't change it, so it doesn't make sense to lose sleep over it. But I am a realist too :-)

Val

[*_Janet M_*]

Hi Val
I don't think you were being doom and gloom but stating some very important facts. I suppose my biggest worry is that i did not get onto a Herceptin trial initially as my onc didn't organise it and i didn't realise the importance of herceptin. By the time i realised it was too late and i had missed the boat. it is now 2 years 9 months since my initial diagnosis and two years since i finished chemo. Whilst i try not to dwell on it i suppose it is always in the back of my mind that i have not received the best drug for my cancer and therefore i feel vulnerable. when discussing the risk of recurrence my oncs words were "well you are HER2 positive" almost as though it was a certainty that eventually i would have a recurrence. Thanks for your input i really appreciate it. Janet M

[Becky]

I do not believe all Her 2+ women relapse (even when Herceptin was not available to be used in early breast cancer) and here's why.

Let's say you are Stage IIA and you look up the 10 year disease free survival which I think is 71% (which means these ladies took treatment that was probably cutting edge 10 years ago and probably didn't contain Adriamycin then either so survival rates 10 years from now will be even better but we will use this number). This mean that 29 out of 100 women have a big problem but not all of those women are HER 2 women. Out of 100 women, 25 are Her 2 and not all of them are in the 29 who have a big problem. You might want to say that 12 or 13 might be Her 2 and then you have your triple negative women (not ER, not PR not HER 2 - science hasn't told them their driver yet) and then the "regulars" (ER/PR +).

So absolutely not that Her 2 is never cured the first time around without Herceptin. You HAVE to remember that in our day to day life and our virtual lives, we hear about the people who recurred and the women who passed away. We don't hear about the millions of women who lived and are living.

When I first was diagnosed, I just remembered death - the couple of women I knew or heard of that died from breast cancer. Then so many women called me to tell me that they had it 5 years ago, 10 years ago or others told me about their friends who are still going strong.

You have heard about your friend because she had a recurrence. How many women in your town had BC and didn't recur (and some of them are triple negative or Her 2 whether they know it or not). I have a client who is a 17 year disease free survivor (at the time had 22 affected nodes) and was not ER/PR positive but was not Her 2 tested at the time because they didn't do it then. So she's either Her 2 or a triple negative and she is here.

Bad news travels fast - that's a fact because it is something to gossip about. Being alive (long term) may be what's on our minds, but for the rest of the world its a moot point - they want to know who died today, whose husband left who for whom etc (you get my point).

I can say don't worry, be happy so I will. Don't worry, be happy, live and love well. Everybody dies and nobody knows when so enjoy yourself.

Warmest regards,

Becky

[Montana]

"When I enter my disease stats in the recurrence probablity calculators, it shows a 95% recurrance probability"

Where is this calculator located, please? TIA

Sue

[triciak]

Does anyone know whether a woman who is diagnosed as her2 now with BC mets would have to have been her2 for the original BC and any other mets in the past? When I was first diagnosed with BC in 1985 there were no tests given for the her2 gene. The same is true for my first mets in two vertebra in 1990. Now over 20 years after my first DX and first mets I have tested her2+++ with lung mets. I am trying to understand if I've always been her2, just not tested, or if I have become her2 now for my latest mets many years after the first BC and mets. After a year on herceptin and femara (and navelbine the first 6 months) a recent PET scan shows no evidence of cancer. Does anyone know where do I fit in with the questions and answers on this topic? Just curious! Hugs, Tricia

[sassy]

"My opinion....because 90% or so of Her2+ BC patients are Er/Pr negative,"

This statement surprises me, because I asked my onc yesterday specifically about the statistics of hormonal status of her2+. He stated that about 50% of her2+ were er+.

Does anyone have any additional information concerning this statistic?

Statistically speaking, I feel that her2+ women have to be divided into two categories. Those who were diagnosed and treated according to protocols prior to the trials released from ASCO in May, and those who have been and are being diagnosed and treated according to those trials. Previously her2+ was not tested for nor specifically treated until late stage. Testing is now done as standard procedure and early stage is treated with much apparent success.

I am a numbers person, so I do look at statistics, but I am not number or a statistic, I am me.

Statistics are numbers that can give you some idea of how others in your situation have fared. Just be sure you are looking at the right 'numbers' or statistics that apply to you. Then remember---you are not a number or a statistic. You are an individual.

Sassy

[karen]

Actually, I have had several oncs and nurses tell me that most women diagnosed, Her2+ are usually er/pr-. I went to my BC support group and there are 5 of us who are Her2+. Myself and 2 others are er/pr+, so I am not sure what to think.

Karen

[sassy]

It seems to me that a lot of the women on this site have reported being at least er+. I'm triple positive, er+, pr+ her2+. See my post earlier on statistics.

Sassy

[Karen]

Becky,

Thank you for your post! I agree with you 110%.

Karen

[suzan w]

I am ER+ PR+ and Her2+++ for what that is worth!!!

[AlaskaAngel]

We all kind of brought up different questions and I'd like to clarify any confusion.

Janet's original question was:

Hello
Just a quick question. As fas as everyone knows - do all woman who are HER2 relapse so it becomes a question of when not if. Janet M

That is a different question from Sassy's question, which was:

"My opinion....because 90% or so of Her2+ BC patients are Er/Pr negative,"

This statement surprises me, because I asked my onc yesterday specifically about the statistics of hormonal status of her2+. He stated that about 50% of her2+ were er+.

Does anyone have any additional information concerning this statistic?"

* * *

I think we end up being confused about numbers partly because we are thinking about three different characteristics, two of which have always been emphasized(HER2 status and ER status) and one that has not (PR status). But the whole discussion started out originally based on the new article that was posted discussing the importance of PR status.

Please see my post under "ER, PR Status with HER2+" topic for some rough statistics I found that may be helpful.

Also,

Janet, your question is interesting to me. I am told that most HER2's recur within 3 years if they are going to recur. But because it has not really been standard until this year to test everyone with bc in the U.S. for HER2 status, and because it was discovered that around 1/5 or 1/6 of the testing that was done in the past wasn't accurate, it seems to me that no one can be very accurate about answering that question. Would there really be much reliable long-term data? Also, until relatively recently it was commonly assumed that chemotherapy didn't affect survival, just limited the onset or frequency of recurrence. (That was before aromatase inhibitors were widely prescribed, before dose dense, before it was decided that Adriamycin was more effective, etc.) So maybe for those treated earlier and who have not benefitted from these additional types of treatment, maybe the answer to your question would be more likely to be yes.

This is why I do not understand the current basis for generally denying Herceptin to all of those who are "more than a year out from treatment", because most of them would fall into the group who never received dose dense or Adriamycin; and if the chemo they got only limits onset of recurrence and frequency of recurrence then logically they would end up dealing with more cancer farther down the road than "a year out from treatment". So my question is, why are they leaving so many women from previous years out? Are they "ASSuming" these women don't matter while science romps forward to deal with the newly diagnosed?

AlaskaAngel

[sassy]

My onc drew a graph to show me the difference in recurrence rates in the "normal" breast cancer population and her2+ cancers treated with herceptin. He stated that the "normal" rate of recurrence runs fairly level for the first five years then begins to gradually drop off. With her2+ treated with herceptin, the rate of recurrence runs fairly level at the same rate as the "normal" population for about TWO years, then drops off DRAMATICALLY. I asked if this was based on the four years of studies and he said it includes some for five years.

This would concur with what Alaska says she has been told about her2+ recurrence.

Sassy

[Janet/FL]

Sassy writes: With her2+ treated with herceptin, the rate of recurrence runs fairly level at the same rate as the "normal" population for about TWO years, then drops off DRAMATICALLY. I asked if this was based on the four years of studies and he said it includes some for five years.


Janet replies: This maybe why my current onc said I maybe on Herceptin for one OR two years! A new onc will be taking over at my clinic soon. I hope he keeps up with this!

Janet/FL