a cure

[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The moral of the story, carfull which book you believe as it may be out of date.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 I also understand that so much of the written materials out there are completely "out of date" so to speak.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