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 (http://colorado.dispensaries.org/)

[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.

[rinaina]

Penelope, I am sorry you have this too, there are so many of us. We must keep in touch. I hope you do as well with treatment as I am so far. Stay positive and believe that you will beat this, that is half the battle and we all know the power of a positive outlook and mind.

[rinaina]

You bet I will Sheila take all the tx I can because I do know how unpredictable this b.c. can be from all of the posts on here. I feel like all I do sometimes is research but for me it is the right thing to do. I need the info to feel in control of things. Some don't like that but it comforts me, it doesn't scare me, it equips me and makes me a good advocate for myself. This along with a positive attitude will see me through this. Thanks for the advice.

[LovingDaughter]

My mom's situation is slightly similar to Rinaina, except that she had two positive nodes and is stage IIB. Any thoughts from anyone on prognosis on this stage? I agree with rinaina that it is all very scary. Her treatment is AC-->T +H dose dense.

[rinaina]

Mets, I had my 1st A/C tx may 25 and will have 3 more 3 weeks apart. the plan then is taxol and herceptin every 3 weeks with radiation going on at same time i believe.

[penelope]

rinaina,
How large was your tumor? I did not have taxol and am now 6 months out from chemo, but I see it is recommended for you. Did you have any vascular invasion?

[Mgarr]

Loving Daughter,

I was staged at 2B as well, though there is never a guarantee, both my onc's never made me feel I had anything but a good prognosis especially with the addition of Herceptin. Your mother is blessed you have you and I wish her and you the best.

Mary

[rinaina]

penelope, my tumor was 1.4 cm, clean margins nodes negative stage 1 grade 3 her2+ er/pr- infiltrating ductal carcinoma. you mention you are 6mths out of chemo....are you or were you treated with anything after chemo? have you seen the latest on Tykerp haltng cancer progression in her2+?

[rinaina]

mgarr, my onc gave me a favorable prognosis too.

[penelope]

rinaina
I am currently 1/2 way through a year of herceptin. My onc told me that given my tumor taxol would only benefit me 1% in the end and that the risks far out weighed this. The herceptin is very tolerable. I plan to ask my Dr. about Tykerb next month when I see her. A pill sure would be a whole lot easier to take.

[rinaina]

how did they know that taxol would only help about 1%...did you have oncotype dx test? Why would my onc not give me that test of the fish test? i asked him about both but he said with my her2+++ and grade 3 it wouldn't change his tx plan. should i insist? also how does everyone feel about preventitive scans? i have only had a mug scan.

[penelope]

I am er/pr- negative and the onco test is only for er+ women so I did not have it. When I worked out the numbers with her using adjuvant onling I found that the absolute difference statistically with and with out taxol was only 1% and given my favorable prognosis combined with such a small tumor she pursuaded me not to take taxol. However I pursuaded her to give me herceptin so I guess it was a wash.

As to scans I had a pet/ct scan before I had any surgery. This was not suggested by the doctor but my uncle who paid for the test independently. I have also had a liver ultrsound because I was experiencing some symptoms from a gall bladder, a chest xray and head ct because I wound up in the emergency room during chemo. I guess in the emergency room they just check everything because they do not want to get sued. Oh and I had a bone scan. Everything has come back clear. So I elected no Taxol. I think the pet/ct scan was my biggest decision maker for this. It picked up the tiny tumor in my breast 7mm but everything else was clear.

[StephN]

Rina -
You mention having Taxol with Herceptin. It is clinically proven that these two drugs work synergistically together - have a better effect than either drug alone, which is why this is the standard of care now.

You mention that you will have radiation. I am quite certain you will have a break after the chemos, stay on the Herceptin schedule and after 3 or 4 weeks begin the radiation. This is the normal schedule. Check on that so you will have it in your calendar. I suggest this since you have to go EVERY week day for 5 weeks. Does not leave time for other things and you have to prioritize even more during the radiation time. This will also tire you out as you get toward the end and leave you that way for a few weeks generally.

Taxol plus Herceptin worked for me in my Stage IV situation with raging liver mets. I am also hormone neg.

[Mgarr]

Rinaina,


Upon my initial diagnosis I only had a abdomen & bone scan and MUGA which was every 3 months during Herceptin (I have 1 more treatment). I have asked both oncs. - I have a regular one and one at the University that I see for 2nd opinions. Neither recommend any scans after treatment for early stagers.

Mary