waiting for her2 tests, then need to decide, HELP

Hi everyone, I need some help and info to help in my treatment decisions,
June 30 had lumpectomy, 1.6cm, node neg, stage 1 grade 3, er neg,
I am 33. Waiting for her2 test, which I will get back the day before I am scheduled for chemo. If positive onc wants to do CEF, stating my age and aggressiveness of cancer as the reason. If negative, is giving me the choice between AC, AC+T or CEF. It is hard to find info/studies because of my node neg. ?????????????HELP?????

Hi Shawna,

I was diagnosed May last year with almost identical cancer to yours. I was 38 at the time and Her2 positive. I had 6xFEC(CEF) after the lumpectomy, and found it was fairly easy to tolerate. No permanent effects at all and hair all grown back. Doing fine so far.

Someone correct me if what I have gleened from our board is wrong; however, if HER2 +, then AC&T plus herceptine off-label, (if your onc will give it to you), would be the current gold standard.
Al

The most frustrating thing I found early on about this disease is that there is no black and white. Did you ask your onc why he is giving you this choice? He should know the statistics for each combo. The good news is that he is including you as part of the decision-making process.

Personally, I went through AC, then Taxol after my lumpectomy. I was ER+, PR+, Her2+++. Similar size tumor, node neg. My grade was poor and it was aggressive. Afterward, I even did a mastectomy because of uncertain scans, although no cancer was found. It worked well for 3 1/2 years before I was diag with recurrence to liver/bones, and now brain. But that just means I was in the current minority of those with HER2 pos who get recurrences. There's just no way of knowing, regardless of which chemo you choose. My advice is always: do your research, look at the stats, choose your treatment (with your onc), then forget about the stats and forge ahead. The stats are not you and will only drive you crazy if you focus on them.

Love and light,

Lisa

I'm doing what Al mentioned in his message. I had a 1.5 cm. tumor, neg. nodes and am her2+++ and er-. I did FAC for 5 sessions every 3 wks. (was supposed to do 6) and then switched to HTC every week for 12 weeks. I have two more to go and am working full time. Hope this helps you. Can you please e-mail me about what tests you're talking about? Do you mean FISH or the new assay/genetic marker test I'm beginning to hear about? Thanks for responding and I wish you the best.

Vicki Z in So. Cal.

Hi Shawna:

I have just finished my chemo. I also live in Vancouver, BC so probably live near you.

The good news is that Vancouver is the top rated place to get treatment in Canada if you have cancer (stats from CBC).

I was diagnosed Oct 31/03, 1.7cm, node neg, stage 1 grade 3, er neg & HER+++ and had a mastecomy. I too, was given the exact same chemo choices (AC, AC+T or CEF) I chose AC+T. This is why:

AC by itself tackles a certain amount of cancer and improves your chances of survival are X%. The advantages of AC by itself is that you have a fairly decent chance of RETAINING your fertility if you are pre-menopausal.

AC+T. The addition of taxol improves your survival chances another couple of percent over X%. It is not a lot, but it is some. If you take this regimine your chances of losing your fertility and becoming menopausal are considerably greater (I was told aprox 70%).

CEF is the hardest on your body. I was told I would have no chance of retaining fertility with this one. I beleive it is also used with more advanced cancer than what we have. The advantages of this is that you might want to become menopausal. (It also might have a very SLIGHT survival advantage although I can't remember this for sure)

On a cheerier note: I found the AC/T quite easy to take physically. Only a bit of fatigue. The anti-nausea medication that they have these days are great, so I only got sick enough to puke once. And the good thing about no hair is that it is much easier to look after than long hair...not that it's much consulation, but you have to look on the bright side of things.

Good luck, and take care.
Merridith

PS: Al is right about getting the herceptin (apres chemo)if you can get it off protocol. But if you live in Canada, you can't get it. I put out quite a bit of effort trying to get it.

There was a herceptin trial based out of Vancouver for adjuvant breast cancer which I am on, but only on the observation arm. This trial is full, and there is no other possible way you can get it except if you go to the States. Herceptin is only available here for metastatic forms of the cancer.

If by some miracle you are able to weasel it,(let me know!!!) you should try and get the onc to give it to you at the same time you are taking the taxol (there is synergy between the two drugs - this was just recently published by MD Anderson Hosp in the States)

MP