Should I have had AC with my Her2/Neu status?

[Chelee]

I was DX Stage IIIA, Er & Pr positive, Her2/Neu 3+++, Richardson scale 9 of 9, node positive. I was DX back in Dec. 05. Since then I have had lots of time to talk to others, read boards like this one and see what other peoples tx plans are.

I have noticed in the four months that it sure seems like people that have my DX...or very close to it...all had "AC" and then followed up with Taxol, herceptin....or Taxotere & herceptin. Either way...I keep reading that they all had at least four rounds of AC.

Why did I NOT get AC? I was started on Herceptin, Taxotere, & Carbpotin...with weekly herceptin. It worries me that I didn't have the AC...I want the best chances like anyone else does. Is there anyone else out there that has a simular DX as mine...and did NOT recieve the "AC" Treatments first?

[tricia keegan]

Chelee I am stage 2a and also had the a/c before Taxol and Herceptin.If you were only treated in Dec it may not be too late to have the a/c.I would discuss this with your onc if I were you.It 's not very pleasant but tolerable and do-able.I can understand your concerns as I also want to treat mine as aggresive as possible.I was also node pos and triple positive.

Tricia

[Cathya]

Chelee;

I am stage 3C and also had 4 AC and 4 Taxol, etc. One problem that has developed for me however is that the combination of one of the AC drugs combined with the later effects of the herceptin has caused me to have heart problems and I have been taken off herceptin. Perhaps if I had had your treatment instead I would still be on herceptin. I don't know but I do know that it wasn't discovered that I was her2+ until into my taxol treatments. Perhaps this is why your treatment is this way?

Cathy

[saleboat]

Hi Chelee,

Please don't worry! The chemo that you had was recently the subject of a large study that measured the Carbo/Taxol/Herceptin combo against A/C + Taxol & Herceptin. So far, it has been shown to have a very similar efficacy in preventing the distant spread of early stage breast cancer. Even better, it has been shown to have fewer heart side-effects than the A/C + Taxol & Herceptin combo.

Here's a link that may help you...

http://www.breastcancer.org/research...in_012606.html

All the answers are not in, but hopefully this will put some of your fears to rest.

Best,
Jen

[Chelee]

Hi Tricia, I think I will at least bring it up to my oncologist. I see her this coming Monday. She is new to me...I CHANGED oncologist because I didn't feel he was listening to me...or really cared. So far I like this new oncologist...she is so different...and has handled my care so much better then the first one. I am glad I switched as hard as it was.

But he, (first oncologist) is young...only been practing oncology for two years...verses my new oncologist that has been into it for 20 some? And its the FIRST oncologist that started me on this treatment plan. Maybe he WAS concerned about heart problems with the AC? I did tell him my Dad died at 36 years old due to a massive heart attack.

As you mentione Tricia...I have heard that the AC is NOT easy. I have only been doing the herceptin, Taxotere, & carbpotin for three months...I haven't even gotten to a point where they tell me if the chemo is working?

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Hi Jen, Thanks for telling me about that study. The only thing that you mentioned in that study that concerns me is they did it for EARLY stage BC. I am NOT in early stage. I am Stage IIIA, Er & Pr positive, Her2/Neu 3+++, positive nodes. Richardson score 9 of 9. (Highly aggressive!)

Thats why after all my reading online...it seems everyone with my type of highly aggressive cancer were ALL FIRST treated with AC. I wonder if they have done that same type of study with people that are stage III's and Her2/Neu 3+++? But I sure am going to go check out the link you sent me. Thanks a million.

I really think my first oncologist was really young and new...and no doubt concerned about my family history of heart problems the more I read.

Cathy, I am so sorry to hear you had some heart damage from the AC. I do know that stuff is harsh and has caused lots of problems. Do you know if it is reversible in time? After a break...is there any way you will be able to get on the herceptin? Of it won't be possible?

You mentioned that they did NOT know you were Her2+ until you were into the Taxol. In my case...they new my Stage IIIA status, Her2, 3+++, and positive nodes right from the start. (They first thought I was stage II...but after my mastectomy that I CHOOSE to have...the path report from there came back showing my pronosis.) So they have no excuses...other then concern about my heart I would think?

Anyway..I know for sure I will bring this up to my NEW oncologist I just changed to recently and see what she thinks about it? I don't know what to do...I am just stressing. Some days I am fine...and others I just can't think straight.

Thanks to all of you.

[saleboat]

Hi again Chelee,

I hope I can do a little more to convince you that you had a great treatment-- it is just that the addition of Carbo for non-Stage IV breast cancer is very new, and it takes some time for Oncs to change their ways. The study results weren't even released until about 6 months ago.

Just to clarify, at least at the treatment center that I go to (Sloan Kettering) they call everything but Stage IV breast cancer 'early stage' breast cancer. I had Stage IIIC bc-- ER+/PR+/HER2+-- a lot like yours. I DO know of other women who were Stage IIIC who received the chemo that you have.

This stuff isn't easy, and ironically enough, my Onc, friends and family will tell you that all during treatment I STRESSED majorly as to whether or not I should have had Carbo, instead of the A/C-- so just the opposite of your stress.

I hope you can put your mind to rest on this issue. Like I said, this stuff is not easy, and fears play on our minds in different ways.

Good luck.

Jen

[Chelee]

Hi Jen, I do feel better NOW knowing that your center "Sloan K." considers everything early BC if its not stage IV. (that I did not know.) Now I can breath a little better. That alone makes a world of difference.

I probably would not of been so concerned had I NOT been passed off to the newest and youngest oncologist on the block right after my surgery. I had some serious reservations about seeing the NEW guy with *little* experience. (I wouldn't of cared if this was for some other health problem...but we are talking about a very aggressive cancer.) I didn't want this new guy practing new ways with me. Just my personal preference...I want the oncologist that has been around the block and seen it all. And I was right about the new guy....he cost me alot of problems by not paying attention. I am SO GLAD I switched doctors!

But he set up this tx plan...so that is why I was worried. Especially when all I read was everyone in my shoes...or close to it ALL seemed to *start* with "AC" ...then followed by Herceptin, Carb, & taxotere, or something close to that.

But I am relieved to hear you say you know of, and have heard of others doing the same tx as me. I do know the AC is really hard on a person. Thats why I thought my first oncologist choose not to give it to me. I do go tomorrow (Monday) for my weekly herceptin tx so when I see my oncologist I will run this by her. She has 20 + years in oncology, hematogy (sp) and Internal medicince.

I have noticed she didn't change my tx plan from what the first guy set up...so maybe its ok. At least YOUR post makes me feel much better about it. Like you said Jen...all this is NOT easy and the fears to play on your mind. I have my really good days...then wham...back to stressing over things that I cannot change. I have to quit doing that! Thanks a million Jen.

[Lani]

The latest opinion of how things are/should be evolving I heard from Dr. Slamon in San Antonio was, if things continued to look like TCH results were as just about good as AC+T results as the studies matured (went on longer), then the future may hold that patients get tested for TOPO IIa and ONLY those who have it get AC at all! (to decrease chances of cardiotoxicity by only giving anthracyclines to those patients who really need it and can benefit from it)

If you are the type of person who will always stay up nights wondering if you should have had an anthracycline, you could pay $190 or so and have your tumor sent to Targeted Molecular Diagnostics for a Topo II test. But you have to ask yourself, how you would feel with the results if they went either way-- If it is negative, you can be happy you were spared the toxicities of an anthracycline; if it is positive, it still doesn't be TCH isn't enough for you--noone knows.

We are all in the middle of one of the biggest experiments done in the history of mankind-- hundreds of thousands of women are having their results on different treatments examined and tabulated to see what seems to be working best and to dissect out the different subtypes of breast cancer that behave differently and need different treatment--but those who are her2+ have REALLY BENEFITTED FROM THIS EXPERIMENT.

There are no answers. There will always be risks. You have to decide for yourself. It is always good to question. Information is your ammunition.
If you look backward too often it may just haunt you and keep you from using your energy to get the best information to prepare you for the future.

Good luck!