a cure

[rinaina]

Does anyone with her2 ever get cured and not get reoccurences? Sure doesn't seem like it from what I read. I know this is an aggressive cancer but I really thought with chemo, herceptin and radiation I had a chance at beating this but not too sure anymore. I am stage1 grade3,er/pr- her2+ node negative, clean margins, tumor was 1.4 cm. My onc told me with herceptin and node negative I have a very good prognosis, he has seen an 86% non reoccurence in cases like mine but now I think from reading so much about reoccurences, this couldn't possibly be true. Any feedback would be greatly appreciated.

[AlaskaAngel]

Rinaina,

The prediction aid that is most commonly accepted is Adjuvant!, and so far it does not provide the ability to specify HER2 status. It is regularly updated and still those who put together are not yet willing to give projections specific to HER2's. Oncs may have a sort of general impression from their own practice or from various clinical trials but there isn't any definite clear info for us about that.

If they can't say, then I think it is pretty bogus on their part to continue year after year to exclude anyone who is HER2+++ from getting traztuzumab no matter how far out from original treatment.

Perhaps they feel cancer patients aren't smart enough to figure that out.

BOO HISS.

AlaskaAngel

[Becky]

Not everyone recurs. If that was true, the general recurrence rate would be very high (ie: all her2s are about 25% and we have all know many more that are just hormone positive that do recur). It is just that Her2 does recur more than the run of the mill kind but that's all.


Don't believe that you won't be just fine because you will be just fine

Becky

[Chelee]

rinaina, That is a good question and one I have been tempted to ask for the last five months since my DX. I have read so many recurrances...that it doesn't seem like anyone goes without a recurrance with this Her2/Neu bc? I try to stay so positive...but sometimes its over whelming. But I have come to far to give up at this point. Anyone can beat the odds or go into remission for some unknown reason. We all have to try.

But with you...your DX is MUCH better then most, and with a much less chance of recurrance. Much more hope then someone like me. You have clean margins and one big thing going for you is your node negative. That is a major plus. So...stay focused and think positive...your doctor is being straight with you. Hang in there.

Chelee

---------------------------------------------------------------------------------
Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 5 of 16 positive nodes, Richardson scale 9 of 9.

DX: 12-20-05
Modified Radical Mastectomy 1-3-06
Started chemo Feb. 7th & last on is June 12th.

Herceptin, Taxotere, & Carbpotin

[SherriT]

Thanks for asking that question. I always wonder (and worry) about the same thing. I find it especially difficult because I was diagnosed Stage IIIB, Her2+++, ER/PR negative, WITH the addition of it being inflammatory breast cancer. Is there anyone out there with a similar diagnosis? I often feel like I am the only one. I know there are at least a couple others on this board, but are there really so few of us?

I also find it difficult sometimes to compare the treatment of others to what I have had because I am in Canada and other 'similar' Her2 people are from the United States. Does anyone have any input on that--as in would Canada and the U.S. generally treat a similar diagnosis with the same treatment plan?

[al from Canada]

Sherri,

The Canadian Gold tx. standard is the same as the US, although it usually takes 6 mos to 1 year for Canada to catch up with the FDA. That point may be moot as if you do your homework, in american tx plans, you can still get the "newest" tx "off label" from your onc.

Secondly; I'm fairly sure that the "aggressive" cancer label given to HER2+++ has been shown to be a blessing in disguise in terms of over-all survival stats compared to other BC's. This is a result of targetted therapies such as herceptin, tykerb, iressa, avastin, etc. In fact, the worst BC cancer to have is the "triple-negative", (ER(-), PR(-), HER2 (-), as once you run out of chemo options, you run out. That said, I'm sure that within the next few years , other molecular signatures will be discovered to target these cancers.

The moral of the story, carfull which book you believe as it may be out of date.

take care,
Al

[SherriT]

Al,

Thanks for your reply.

I understand the 'aggressive label' given to Her2 doesn't exactly hold true anymore, but I think what I meant more was the aggressive label given to the inflammatory bc ("IBC"). Everything I read/hear seems to indicate just how nasty IBC is and that the prognosis is not very good if you have it. I also understand that so much of the written materials out there are completely "out of date" so to speak. I really do try to locate/read only current material but that is also frustrating given that any time you do find something about IBC you're lucky if you can find a paragraph on the subject! In any event, now that I've got completely away from the topic on the original thread, thanks for listening to me vent.

Sherri

[sherri]

Hi

I'm from Vancouver, IBC, HER2+++, ER,PR Negative Stage IIIB. I did a lot of research and I know it does not matter what is your stage? I'v seen stage 0 that dies in less than a year, and stage IV who lives happily ever after. Cancer is a very strange disease. I went for UW Vaccine Clinical trial and they told me my treatment has been the best and they would do the same thing in US. It depends who is your doctor. I did find out that BC Cancer Agency is more concervative than my oncologist. My oncolologist would send me to US, if he would think there is a better drug in US.
Please e-mail me I like to see you.

Big hug,

[RhondaH]

And another point that has not brought up is that Her2 testing has only been going on for a few years, so there are MANY women who were dx prior to Her2 testing who may have been Her2+, but just don't know it as they haven't recurred. AND, the people on this site are only a "handful" that are Her2+, I know others who are, but are just not a member or don't even KNOW about this wonderful group. Keep positive. Take care and God bless.

Rhonda

[rinaina]

Thank you to all who responded to my question about do all her2+bc reoccur. I think I feel a little better but there is so much uncertainty. I know I am fortunate to be node negative but feeling like I only have this chemo and herceptin right now to fight it. Because of being er/pr- I won't be getting arimidex so after herceptin what is my next crutch so to speak?

[al from Canada]

Tykerb, pertuzumab,.....avastin... we need more molecular and receptor profiling to get a good tx plan going.

Al

[rinaina]

Couldn't agree more Al.

[al from Canada]

One more comment about ER, PR (-), those markers can change the same as HER2 - can change to HER2+++. Your original biopsy won't change if you are NED but if you have mets, I would consider nothing off the table.

A

[LovingDaughter]

Al--

You are such a wonderful source of information. Thank you for helping us all to stay well-informed.

Jayne

[Sandy H]

To Sherry T. and the rest of you that are IBC. I am over 5 years since diagnose. Back 5 years ago there was very little information and what there was wasn't encouraging. My first year was terrible for me because every corner I went around I heard the same thing that IBC is the worse kind of breast cancer, not enough people have it to warrant doing research, there were no survivors, and I had NO long term survivorial time. Well, now that is all behind me and I am living life to the fullest. There are long term survivors, research is being done, and we are being recognized as fighters. I attended an IBC support group and believe me we are fighters!!! For those of you that aren't aware there is an IBC message board just go under IBC support and you should be able to find it. If anyone would like to e-mail me please feel free to do so. sanhenry@prexar.com hugs, to all you brave people. Sandy