early stage breast cancer and herceptin

[suzan w]

This subject has probably been addressed here before, but...curiosity has me wondering, how many of us here are considered, "early stage"...ie: no mets, breast cancer and are getting herceptin. Seems like it depends on where one lives as to the treatment...

[panicked911]

I live in westchester Couty ,New York -30 miles north of manhattan - there was no question as to whether or not herceptain- only if it was going to be given w/ chemo - since no node involement and tumor(s) significantly less than .2cm and strongly er and pr + Herceptain plus arimidex plus lupron shots -

[Bev]

In VA, I think most stage2's and 3's get herceptin following chemo since last June. I still don't think the FDA has approved it yet, but they will. For stage 1's, if all the factors warrant chemo, then they would call for herceptin as well. As far as I know, they haven't done trials with herceptin without chemo, so if you don't need chemo you won't be doing Herceptin now. Eventually, I hope, maybe Herceptin will be the first line for all stages and they'll save the big guns(AC) if it doesn't work.

[Jean]

Good Question!
I believe there are a few of us who are getting treatment.
I was dx. with stage 1 very small tumor 3MM..er postive
pr negative - grade 1 - node negative. her2 positive +++

Was advised by oncs. no chemo/herceptin needed..had radiation and now on Arimidex. Did not like what I was hearing since reading about the new research on early bc. with her2 positive. It appears that 1/3 of early stage bc with small tumors - node negative have a recurrance. This really frightened me greatly.
But the onc. continued to consider the size of the turmor and node status.
Well - I insisted on the Oncotype DX test which I had to fight for (this went on for months) the results came back and it read high for recurrance. This was my wake up call and my onc also, who now said chemo/herceptin.

Listen Ladies - pay great attention to the fingerprint of your tumor and the heck with size - in this case "size DOES NOT matter".
I will be starting chemo/herceptin very shortly. I am only very sorry that I did not fight harder than I did - believing that my onc. knew what they were advising. Also to note; I am NOT living in a remote area - I am just outside of New York and all my dr. are in major cancer centers in NY. We are a new generation of cancer patients - we are able to discover cancer much earlier than ever before what with getting exams and the awarness we now place on breast cancer - Digital screening is another big step forward for women. If you are her2 positive - I say approach that early cancer in a strong manner.

Great Post Suzan! Hope your feeling well!
Hugs to all!
Jean

[Becky]

I am Stage 2A (1.9cm tumor and one node positive). The trial study results came out 3 months after finishing dense dose chemo (and one month after finishing rads) so I started Herceptin 4 months post chemo (at that time, the recommendation was to give node positive women herceptin who were 6 months post chemo. A bit later, that was changed to 12 months).


I have not heard of newly diagnosed women not getting herceptin with the taxol treatments and then out to a year.

Becky

[tricia keegan]

I'm similar to Becky but had 3 positive nodes.I got Taxol and herceptin weekly and now continue herceptin every 3 weeks until Nov when my year will be up.
Tricia

[juanita]

I was stage 1 and live 45 minutes north of Indianapolis. My doctor and others in his practice give herceptin if you are her2 +.

[Maggie]

I live 30 minutes north of Philadelphia in Montgomery County.

My tumor was 1.2 cm. stage 1, ER/PR neg HER2 3+ no node involvement! 2004 My doctor told me that I only got chemo, A/C, because I was HER2 and they were treating me aggressivly, otherwise I wouldn't have gotten it, just rads!

As I've mentioned here before, I knew that this past November,2005 a decision would be made if early stage could get Herceptin. They were allowing up to 1 year out of treatment. For me that was October, but they had to send and test my tumor by FISH,also, so hence the waiting time. Once that was confirmed, I started every 3 weeks for a year.

I was 1 year out in October, but he gave it to me anyway, starting in November. He also said he would have done it a couple of months later, too if he had to.
My oncology group also has tumor conferences every week with as many different oncologists as possible, present. My treatments were discussed in a conference each time. Fisrt for the A/c and second for Herceptin. My doctor told me the Herceptin one was a "really big" conference. :) Lots of chatter there he told me! Lot's of debates!

Maggie

[heblaj01]

I believe that in cases of slow growing cancers most oncs prefer to delay treatment until there is a significant change in the status or as long as quality of life remains satisfactory. The reasoning is that too early treatment may not result in longer survival & that as a result side effects may outweight benefits.

However HER+ cancers are usually more agressive & early treatment should be seriously considered.
This also means that markers of early status of the HER+ condition must be available. The currently available tests (FISH, IHC biopsy tests or even the Bayer blood test) are not early markers due to their lack of sufficient sensitivity &/or accuracy & repeatability.

A new blood test (under development for automated operation) called FACCT has shown sensitivities 100 000 times better than the current ELISA process in detecting HER+ protein shed by the surface of cancer cells. (see Ref below).
In humans the new test discovered high levels of HER in 9 out of 10 HER+ patients while ELISA found only 2 out of 10.
In animals implanted with HER+ cancer the presence of HER protein in blood was detected within 2 days (tumours almost invisible) while ELISA did not detect until the tumours had grown to inoperable size.
The authors of the FACCT discovery do comment on the advisability of early treatment of HER+ cancers.
When FACCT testing becomes available to all it will be possible to start treating patients earlier with a greater probability in preventing or delaying progression. Hopefully this may also result in enabling some patients to remain stable or improve on endocrine drugs with their lower side effects

http://72.14.203.104/search?q=cache:1RRgW19x07cJ:www.uphs.upenn.edu/news/News_Releases/mar06/FACTT.htm+Florescent+Amplification+Catalyzed+by+T7-polymerase+Technique.+&hl=en&ct=clnk&cd=1

[cherylynnie]

I live in NOrthern Va. I am stage II Grade III er+/pr- Her2 3.0 amplified. I had 4 AC then 4 taxotere now on Herceptin for a year.

[CPA]

My wife was 2cm N0 HER2+++ ER+ PR+. Elected mastectomy (November 2005) w/ 5 nodes dissected (surgeon also offered lumpectomy/radiation as option) and received Carboplatin+Taxotere 3wks x 6 cycles + weekly Herceptin. Finished chemo 2 wks ago and now herceptin every 3wks for remainder of year. Tamoxifen for 5 yrs just starting.

Chose because of possible lower risk of cardiac problems with this chemo/herceptin combo. Her family has significant cardiac hx (mother/father/brother).

Consulted oncologists in central PA and Pittsburgh.

[Monique M]

Jean:

What is an Oncotype DX test?

Monique

[RhondaH]

I was dx ER/PR-, Stage 1 (1.6 cm, no nodes), Her2+ (FISH 3.16), because of my dx and "weak" FISH I was originally NOT going to get Herceptin, but 3 mo after my last chemo, my onc recommended it. I live in Grand Rapids Michigan.

Rhonda

[Jean]

Thank you for the link to a great article!

I already have a call out to Dr. Greene.

You are an angel!

Jean

[Susan]

I was Stage I, Grade 3, node negative. I tested high risk on the oncotype test. So I had four rounds of A/C, radiation, and now 1 year of herceptin (every 3 weeks). I go for my first mammagram since surgery this wed. I'm nervous about it!

Sue

[Peggins]

I squeaked into stage 1. Had three different tumors (IDC, ILC,ITC) and the IDC was Her2+. I shopped for an onc who would give me herceptin. I end my year just weeks after the ASCO meeting and my onc is waiting for the new trial repport to decide if I'm almost done or will go another year. I'm rather anxiously awaiting those results.


Peggy

[Olivia]

I was diagnosed in 12/04... Stage I (.9 cm tumor) Grade III. node neg. Er/pr -, Her2 +. Bilateral masts, a/c and taxol dose dense. Could not get Herceptin on trial (tumor 1 mm too small). Results came in late April that trials ended early. Started Herceptin at last chemo in May 2005. Finish next week. Asked for extra year. Onc. said no.

Olivia

[Montana]

I was diagnosed with .7 mm IDC and larger comedo DCIS stage 1 grade 3 10/04 and had 2 lumpys for clean margins then finished 4 dose dense chemos in late Feb 05 and rads in early June 05. Onc said I didn't quality for Herceptin because of no nodes. I didn't have the oncotype dx test....wish it was available to me in at time of diagnosis. I'll always be wondering if I'm going to have a recurrence. I live in NW Montana.

[Sue2001]

Suzan,

I was part of the clinical trial giving Herceptin to early stage bc patients so I received Herceptin. In talking with my onc last week, he said that he is currently recommending Herceptin to all early stage Her+++ cancer patients.

Sue

[Jackie]

I was dx 4/05 with 1.6cm tumor, one node involved, Stage 2a. I live 75 miles from Austin, TX and am receiving state of the art treatment in a town 38 miles from me. Herceptin was always considered a treatment for me.

[sadie]

I was dx Oct 2005. Stage 1; Grade 3; 1cm IDC ; Sentinol node neg; er+/pr weakly+;
Her2+++ on biopsy; Her2++ at Lumpectomy;
My onc in Utica, Michigan strongly recommended Herceptin even tho I was borderline for getting it. I rec'd AC once/wk x4; Taxol/Herceptin once/wk x12;
Will begin 6 wks radiation soon and am now getting Herceptin every 3 wks to finish out 1 year.
My onc said she would take history into consideration, but would give Herceptin to anyone who asked for it. She is a firm believer.

[mekasan]

I was told by both my onc and my surgeon that herceptin was approved for early stage breast cancer in May 2005. Did I misunderstand??

I was dx in aug 2005, at stage 1 and currently receiving herceptin. I am being treated in at St Barnabas in West Orange, by Dr. Michaelson (on medical advisory board for this site).

[DeborahNC]

Recurred 9/05 Stage 1. My onc at Duke Raleigh in Raleigh, NC recommends Herceptin for ALL Her+ regardless of tumor size, grade, stage.

[AlaskaAngel]

It is of course understandable (although a bit painful) to see how many HER2 bc patients who are now automatically being treated with Herceptin are not aware that there are many, many HER2's out here still who are stuck with having been diagnosed as HER2 prior to the clinical trials for Herceptin, or else left in limbo because their tumor did not meet the clinical trial criteria. It is only available to people in these situations off-label.

AlaskaAngel

[sadie]

Mekasan,
That's what my onc told me.
Herceptin was approved for early stagers in May 2005.
1 cm was made the borderline to recommend getting Herceptin.
She told me about 2 months ago, that they are now considering lowering the borderline to .5cm due to the great success of Herceptin.
I don't know when that will be, tho.
Sadie

[nancymarie]

I have IDC, Stage IIB, ER/PR -. HER2/NEU 3+.

I had AC and Taxotere back in 2002 and finished my last treatment in 2003.

I just started my Herceptin treatments on 12/9/05 for one year at my request after hearing about the results of Herceptin during the trials.

-Nancy

[Berta]

I live in Southern Indiana, about an hour from Louisville, Ky. I am getting herceptin for Stage I. BERTA

[bjj]

I was diagnosed Jan 2005, Grade 2, node negative, 16-18mm tumour, ER+. I was advised rads only. Diagnosed before HERA trial results. Had 2 HER2 tests by different hospitals - one negative and one positve - I'm assuming I am positive (Long story!). Found it all out too late to have chemo so can't have Herceptin. I'm terrified of recurrence.

You were spot on Alaska Angel - there must be loads us out there that were diagnosed just at the wrong time.