HER+2 but NO mets, treatment options?

[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

[momdeeco]

Melinda,
I was ER-PR-, Her 2 +++, 1.1 cm, Stage 1, no nodes, clear margins, Grade 3, lymphatic invasion. I had A/C x 6 doses, and radiation. After several visits with my oncologist she was still saying no to Herceptin. I thought I would benefit from it so I went for a 2nd and then 3rd opinion in Chicago. She agreed that I should have Herceptin and talked with my oncologist in Peoria so I could receive it here at the treatment center. Am so glad I found this site and am able to be an informed patient. Now we are discussing how often to have breast MRI's. Peoria onc. says I don't need any, and Chicago onc. says every 6 mo. I think the main thing is be informed, feel comfortable with the treatment recommended, and if you don't seek a 2nd or even 3rd opinion. Will be praying for you.

[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!!!

[Jean]

We can all share and pass our thoughts plus knowledge which at the end
of day helps us to survive!

Hopeful - Today radiation procedures have come a long way and trials have demonstrated that lumpectomy along with radiation therapy has the same
benefit as the full surgery. In the early days of my dx. I had opted for the
removal of the breast and my surgeon gave me many research reports to
view and after doing so I opted for the lumpectomy w/radiation.
I have someone close to me in my family who had huge radiation therapy
40 yrs. ago - was stage 4 and was given 6 months at best. I am thrilled
and very happy to say she is now 63 yrs. without any recurrance and living
it up. (God Bless Her).... She was only 23 when dx. and 40 yrs. ago
radiation therapy was completley another story from what we are offered today. We are certainly left with difficult decisions to make. I think as modern women our first choice is to lead as natural a life as possible.
Unfortunately when I was faced with my dx. I was more concerned with
gaining time and quality. I could be wrong but I think the effects of radiation
today take time more so than the damage that Her2 causes to us.
(I could be wrong) we still don't know? Anyway I share this story to
maybe offer some good to your decision on your radiation. Also when I met
with Dr. Slamon we discussed the chemo/herceptin decision and he was most
confident that herceptin worked best along with the chemo. Now I don't
know what clinical trials were done (and I do believe they were done) from
what Dr. Slamon said. But most important here is that we can all have input
and share our choices I think we are so blessed to have Joe and Christine
give birth to this site. Of course we must all face our own decisions but the very best part of all of this is the good we are able to do for each other.
So in our journey of cancer - and staying healthy and surviving this challenge
we have gained friends, knowledge and most of all the comfort we
bring to each other.

God Bless All of Us and Keep Us Safe!

Jean

[Hopeful]

Jean,

Thank you very much for taking the time to write. I can only imagine the terrible ordeal your relative went through 40 years ago. How wonderful that she is here and able to enjoy life to the fullest. That is a very positive story of hope for us all. From what I have read, Herceptin potentiates the radiation therapy, and I am satisfied that I got the best I could get in terms of that treatment. However, I still get concerned when I read articles like the one in the current Harvard Women's Health periodical, that discusses the differences in cardiac function and disease between men and women. Women have many more tiny blood vessels, and the loss of elasticity in those vessels are what make us all prone to heart attacks and stroke. They just seem easier to damage, and the changes are subtle. It is the fact that I am also doing Herceptin which, it appears, is having more cardiac affect in clinical practice than it did in clinical trials, and the lack of information over what will happen long term, that has me concerned. It seems whatever we do as bc patients in terms of treatment, we are making a pact with the devil.

I think that Herceptin enables chemo to have more of an effect than the chemo would alone, so, if one chooses to have chemo, IMO, you will not be getting everything you could out of it without Herceptin. That being said, I also think chemo is a therapy that is relied on very heavily in the USA, and not always to the benefit of the patient. I do read, though, that patients often demand it and are willing to endure a high degree of toxicity for a minimal benefit. Obviously, I don't fit that mold, but have nothing but respect for those who choose it. We all have one life to live, and we have to do what we think is right for us. No one can make a decision for another. I agree that we are so incredibly fortunate to have this forum to exchange ideas, hope, information and inspiration.

Best of luck to you (and your relative!).

Hopeful