Longevity

[rinaina]

I have a question concerning node negative, clean margins, stage 1, grade 3, her2neu positive infiltrating ductal cancer. I am er/pr negative as well. Most of what I read is on node positive and stage 2 or above and er/pr positive. Does anyone have any info, research or links that refer to:
!. the longevity of b.c. with these characteristics
2. the treatment of b.c. with these traits
3. how herceptin works with all of the above characteristics

I am trying to get a handle on my prognosis. Most of what I read refers to node positive or higher staged her2 cancers. I also read in overwhelming cases on here about reoccurences but again most of these are in people with higher stages and node positive. I am very confused because I was told my prognosis is very good yet I am not getting that feeling by all I read. I have had one chemo treatment with A/C so far with 3 more to come 3 weeks apart. My next treatment is a week from this Thursday.
Thanks for your input and help. I am scared of the unknown.

[sarah]

I am far from a knowledgeable person on this subject however you are right to be vigilant and concerned even at your early stage. getting chemo is good but I think you should also ask about radiation and see a radiologist, maybe get a second opionion from another oncologist and ask about drugs such as raloxefene and tamoxifen.
don't take supplements while doing chemo but do check out for later curcumin/tumeric, fish oil and others (see other posts) and also co-enzyme Q10 for the Herceptin and heart issue but check all of this out to be sure it fits you or not.
I started off (and I'm sure I'm not the only one on this site) with DCIS, no node involvement and now suddenly I've got invasive cancer so make sure the doctors do the most possible. Good luck, you're at a very early, treatable stage. they say as long as the cancer is in the breast, you can't die of it. it's when it excapes that it gets interesting.
I will try to answer your questions:
1. longevity - should be excellent
2. the chemo depends on different issues. Also if one doesn't work, they'll try another.
3. Herceptin is excellent for HER2+. It works best with certain chemo, and can have heart problems with others, but your doctor should know this. Herceptin I think is now being allowed for stage 1 and if it is, I think most of us would say, ask for it but maybe someone with more knowledge will answer. Definitely speak to you oncologist about Herceptin and if he says no - really push to understand why not. I had Taxol with Herceptin - I think there's some synergy between the Taxanes (Taxol and Taxotere) and Herceptin but as I said, I'm not an expert.
Remember at your stage, the cancer is very treatable.
stay positive, fight hard
sarah

[MJo]

If insurance covers it or if you can afford it, ask for an Oncotype DX test. I don't know exactly how it works, but it looks at 12 aspects of the tumor and is accurate in predicting rate of recurrence in node negative women. My insurance refuses to pay so I'm stuck with a $3000+ bill, but I'm not sorry I did it.
I had Stage 1, clean margins, Grade 2, Her2++ BC and I went through A/C, Taxol/Herceptin. I'm now on Herceptin for a year, taking Arimidex and starting Radiation tomorrow. I'm hitting this with everything I can.

My oncologist told me "you likely are cured, but there are no tests to tell us when the cure took place or even IF you are cured. So we have to keep treating you." Makes sense to me. Wish it weren't so. Hope for better tests in the future.

[mts]

I had my ER/PR double checked. The 1st result was that I was 5% ER pos. I was told that 5% is better than zero and even with that small percentage their was a minimal benefit to take Tamoxifen. The 2nd time they tested the tumors, it came back 15% ER pos. Now I am on Tamoxifen and although barely positive, I am on Tamoxifen.
I too am Stage I, neg nodes.
I just wanted to say that just because you are ER/PR negative does not necessarily make your prognosis worse than positive women. Everyone is different and we all react differently to the drugs. At first I was also very confused and scared. All of us are. But you will see that a bit of time will help you get over the emotional hurdle that now seems impossible to jump.

I do question however, with your tumor status, were you given the option for dose dense chemo? Any Taxane after the A/C ???
It just seems to me that being HER2+ should be enough reason to treat the cancer more aggressively. Of course, I don't know your personal health issues (or if there are any), but it does not hurt to ask your onc more questions...
Dose dense is every 2 weeks (instead of every 3). It supposedly disallows the cancer to recuperate between treatments.
I had 4 rounds of A/C and then four of Taxol. All were 2 weeks apart and then radiation. I am on Herceptin now. AND- yesterday I began my period after being in chemopause since 12/04.

I just hope you can come to a comfortable decision for yourself. And please, don't throw yourself into reading the prognosis factors. All those numbers are based from averages - and you are unique!

My best to you-
MTS

[Sheila]

I would take all you can...I was the exact diagnosis as you 4 1/2 years ago...Stage 1 Her2 +++, Er PR neg, clean nodes...all neg, amall tumor...7mm or 0.7 cm,...it all looked great until 1 1/2 years later I was Stage IV.....this is an unpredictable disease...take all the prevention you can!

[sassy]

Rina,

Do you know if you are scheduled for herceptin following A/C? If not I would question this. Herceptin with a taxane following A/C, then continued herceptin according to the results of the HERA trial for early stage HER2+ should be the optimal treatment. You can search this site for the HERA trial results announced at ASCO in May of 2005.

Sassy
________
COLORADO DISPENSARY

[penelope]

Rina,
You and I are very similar in diagnosis. I have been told that my prognosis is very good expecially with herceptin.

[rinaina]

Yes Sassy, I was told that I will be getting herceptin along with Taxol most likely and radiation as well following my A/C chemo of which there will be a total of 4, 3wks apart. Had my first on May 25.