HER+2 but NO mets, treatment options?

[Dianaq]

I decided against Chemo because I too did not see enough data. I had surgery, radiation and am on Herceptin once a week. So far so good. I think you just have to believe in your decision.

[MJo]

I was stage 1 node neg. I took everything available. If I were diagnosed today, I would still choose to be as aggressive as possible in treating Her2 pos. disease. There are women on this board who were DCIS or Stage 1 who advanced to stage IV, so it can happen. I look forward to the day when there is enough information to customize treatment for every woman. I don't think we are there yet.

[Dianaq]

MJo, Yes I am well awhere of that. Some of those women also had Chemo. and it wasnt much help. I think there are many contributing factors to making our decisions and we just have to do what feels best for us.

[Hopeful]

Melinda,

I was dx at age 52 with a 1.3 IDC cm tumor, 9mm invasive, 10% DCIS, ER+ 80%, PR+ 50%, Her2+++ by IHC, Ki-67 11%, intermediate grade 2, Bloom-Richardson score 7, sentinel node negative, Stage 1 cancer. After reviewing the relative benefits of chemo for postmenopausal, ER+PR+ tumors, and considering the relative chemo refractory nature of Her2+ tumors, I declined chemo. My onc is willing to give me Herceptin without chemo, so my current program is Herceptin for 1 year every three weeks. I am also on an AI for 5 years (started on Femara and switched to Arimidex). I had a lumpectomy followed by 7 weeks of radiation therapy; the Herceptin was started with the radiation.

Everyone has to come to their own decision regarding their treatment plan. There is no "one size fits all." Get as many opinions as you need to feel comfortable with your decision, then go with your gut and never look back. Best of luck to you.

Hopeful

[Diane H]

Hi Diana, I can only tell you my choices and I was stage 2 so a different thought process. I had clear nodes but a 2.3 tumor. I chose to do everything.. A/C, taxotere, radiation, herceptin and femara. I do not know what I might have thought if I was stage 1. I do think I would still definitely do Herception and perhaps a taxane and radiation. Sending prayers and hugs, Diane

[Jean]

Dianaq, I do believe that the members who are or were dx. as stage 1 or stage11 (early stagers) and have had chemo/hercpetin treatment - the
jury is still out on those women - we do not have any stats on these cases yet. We are a new generation of treated women with her2 positive.
Early stagers were not getting herceptin/chemo treatments until just
recently (unless it was off label) for the most part most of the women
were not treated with herceptin. They just had chemo...and many wanted to
have herceptin but they were too far out from chemo treatments.
There are many on the board who are early stagers (node neg.) stage 1 or 11 who have had progression but I do believe they were not treated with herceptin. I believe this was the point MJO was trying to make. The standard
of treatment for early stagers was not herceptin until recently I believe
(Aug 06). In order to be treated with herceptin you had to be at a later stage. There are many on the board that we just don't know
what the results will show in a few years. Hopefully we will not see
progression - of course there is still the % that will not respond
to herceptin. But I think the glass is half full for us rather than not.
The future holds some interesting data for the early stagers who now have had herceptin (and those that have added chemo).

Of course it is always an individual choice - but I do also believe that
the standard of treatment as of today we will now see onc. offering
chemo/herceptin....or just herceptin for us Her2 patients. I have seen
much change just in a short span of 1.5 yrs. regarding treatment in the
early stagers. We are all different and react differently - but one thing is certain we "ALL" want this devil wiped out! With each other sharing information and empowering ourselves with knowledge and God's blessings
we shall win this battle.

Regards,
Jean

[Melinda]

Thank you ladies for all of your thoughts and prayers. I visited the onc today and have realized that it is in my best interest to go ahead with the chemo. He said that if I was 20yrs younger he would be adamant about it and if I was 20 older he would say no..... but just like everything else I am sitting on the fence at 54. The Onco test came back at 23.. again in the middle of the road. It is frustrating thinking that I could have not had chemo if not for this darn HER2+ but with that one reason it was enough for me to say go ahead. I had cancer 15 years ago in another area of my body and treated with radiation and 5-FU simultaneaously... that was hell on earth so I know I can do this.
He has suggested Taxotere and carboplatin 6 rounds with herceptin. I was a little annoyed about the 6 rounds when I see many go 4 of other cocktails, but he explained to me that this combo would not threaten my heart unlike the Adriamycin when coupled with the herceptin. 18 weeks is a long time but heah, I will still be here at the end of it all. Rather that than ending up with dirt in my eyes! I only want to fight this once and Im calliing out the big guns to do it.
I posted again concerning the side effects of what I will be taking so if any of y ou have any feedback please I would like to hear from you. Thank you all again!
Hugs and prayers
Melinda

[CLTann]

Melinda,

A lone voice here. I am basically in the same position like you, but I declined chemo, radiation and Herceptin after mastec. Reading the statistics, the added probablility of not having spread is only a few percentage. In my judgement, the side effects outweight the gain. I am on Femara now. The often-quoted aggressive nature of HER2, when examined in published papers, was far less than actual data. Of course, I am crossing my fingers. Read those who opted for the all-out treatments: many of them have severe problems that caused serious problems.

[Hopeful]

CLTann,

I have had more treatment than you (and am wondering if I am going to "pay" for the left sided radiation with heart problems down the road) but am in your camp on chemo. I also think that Her2+ bc is highly mutable, so that there is a danger of making the disease more aggressive with chemo by causing mutations that make it more chemo resistant. I do not think that Herceptin was laboratory tested on cells pre-treated with chemo, but just on untreated Her2+ cells where it had a very good effect. I am hoping that this carries over to the "real world" environment. Just my 2 cents. We all have to do what we believe in our hearts is the right thing for us.

Hopeful

[suzan w]

just wanted to weigh in ...as you can see from my statistics below! It is so hard to make decisions based on 'statistics', and studies and all that! I just went with my "gut" and...so far so good!!!