Who has recurred after four years?
 

Hi everybody,

In the San Antonio forum there is a very interesting link to a study of 350 Hawaiin her2 positive primary breast cancer patients, diagnosed in 1995 so they never go herceptin, which indicates that these patients either died within the first 38 months or made it the entire decade.

Yet I know of a few people who had recurrences at 6-8 years after a primary. They managed to live a few years afterwards, surviving the decade but not making it overall. The ones I can think of were er+ and had 0-1 nodes involved. On the other hand, before I started paying for late herceptin for my primary cancer, I carefully researched recurrence among her2+ er-/pr- patients with 4+ nodes and the longest time to a recurrence I could find was 3 years.

I was wondering who has recurred after four years and if my hunch that it is mainly patients who might not think of themselves as high risk. This is important because there is a tykerb trial for patients who are more than 38 months out from treatment but who did not receive herceptin.

I think I meet your criteria
 

I was staged 2 to 3, had 7 out of 9 lymph nodes with cancer, and was ER and PR negative in May of 1998. I recurred in May 2004, but had symptoms a few weeks before that. It is now 2007 and it can currently only be detected in the bones. I am responding very well to the Herceptin DM1 trial and hope to be NED again soon. You can read my response below.

Here is a copy of my reply from your post on the symposium.

I was diagnosed in 1998 and didn't recur until 2004. I was given AC + T and radiation in 98. I asked for Herceptin, but was unable to get it back then. After the breast cancer metastasized to the brain, liver, skin, and lungs, with numerous nodes also involved, a few treatments of Herceptin along with brain surgery brought me to NED. Unfortunately, a year and a half later I developed bone mets. I am now on the Herceptin DM1 trial and it seems to be working. I really do wish that I had been able to receive Herceptin in 98. I'm glad it is now available to patients with early HER2 breast cancer.

Thank you to those of you who are posting from the conference.

Barbara H.

I have had a recurrence at 4 years. I did not have any + nodes, but was er+ and pr+ and also her2+. I had chemo and rads and then tamoxifen, but no herceptin. My recurrence was almost exactly 4 years later.

I was originally diagnosed stage IV (inflammatory bc) and had 3+ (active) nodes plus 2 nodes with dead cancer cells. I was her2+++ and er/pr+. I did not get Herceptin at that time. I had 4 years of remission. I am not sure what you mean by "...my hunch that it is mainly patients who might not think of themselves as high risk." I never think of myself as high risk, even after leukemia and my third bout with bc; but my original diagnosis made me high risk of dying and reoccurance from the beginning. I did receive Herceptin when I relapsed. I got a year and a half of treatment before I had to quit because of the leukemia diagnosis. I guess the year and a half of Herceptin was not enough, because the bc is back. I am presently waiting for pathology to come back. If things haven't changed and I am still Her2+, I may start Herceptin again. I guess I don't fit in to many categories any more and wouldn't be eligible for the trial, but thanks for posting...

I made it to 45 months after mastectomy and lymph resection (20/30 nodes positive) and was oestrogen and progesterone negative. Recurrence was mets to lungs and bones, treated with Taxol (only made 19 treatments) and Herceptin. Now all is in remission again and I'm only on three weekly Herceptin. I am now 5 years and three months post original diagnosis and hoping to see 10 years.

Vicki

In 1998, I was Stage 2 with 11 nodes positive, er-/slighty pr+, (not tested for her2). I went over 7 years without a recurrence. Now for almost 2 years I have been dealing with mets to abdominal lymph nodes, and recently hip bones. With recurrence, tested Her2 postive, so have had herceptin, but now on Tykerb. I was high risk, but after 5 years was beginning to set BC aside in my mind.

At my last check-up, the onc told me that his experience was that when his HER2 patients recurred, it was usually stage 4, even if originally diagnosed at Stage 1. He didn't mention a time frame.

I was stage 2 er/pr- with 2 nodes involved. I recurred 3 years post diagnosis with 2 small lung mets, and currently 2mm dcis in affected breast so I had a mastectomy about 6 weeks ago. So far, so good. Ceesun

Thank you everyone
 

It has been very helpful. So, it is good to know that the TEACH trial might benefit people with all different types.

Caveats
 

One thing that I think is particularly interesting about the TEACH trial is that it isn't limited to those who missed out on Herceptin long ago, but is available as an alternative in place of trastuzumab to those currently completing chemotherapy:

[must have] "received and completed a prior neoadjuvant or adjuvant chemotherapy regimen containing either an anthracycline or a taxane; or any cyclophosphamide, methotrexate and 5-fluorouracil (CMF) regimen"

However, the catch is that for those who decide to participate, some will end up receiving placebo and some will end up receiving the lapatinib/Tykerb. So doing the trial doesn't mean that a participant will have any more protection from recurrence than if they didn't, if they do end up on placebo.

AlaskaAngel

Diagnosed with stage 3a, Her2, multi foci tumors, ER+PR-, 2+/12 nodes, I am just approaching my fourth year out since mastect. in Jan 04, and thrilled to report I am doing fine. Had dose dense AC/T, followed by radiation. When the stunning results of herceptin were announced in 2005, I was already more than a year past chemo, but mounted a major campaign to get my onc to prescribe it for me, printing out stories found online about herceptin also working AFTER chemo. In the meantime, I also enrolled in the UW vaccine trial in Seattle. I ultimately did get a year of 'late' herceptin, (along with my Arimidex), begun 18 months post chemo. As the efficacy of Herceptin is still unknown when given so long after treatment, I did query the TEACH trial to ask if they would consider me under the circumstaces, but they would not. I'm hoping they do another trial for early BC-ers who have taken herceptin. Just trying to throw whatever I can at this thing, attemping to elude recurrence! Very heartened by the chart from this year's ASCO showing steep decline of recurrnce after 2 years. Nice Christmas present! Thanks so much for being out there for us!

Where can I read the chart from this years ASCO....feeling like I need a Christmas present too.

Who has recurred after four years
 

Here you go!

Click here: Result Content View

not to be the Grinch who stole Christmas, but this Dutch group
 

had entirely different results and still too asleep to add more info to the slide (I asked approximately how many patients were in each group, whether any were treated with herceptin(no), how many triple positive were treated with chemo in addition to hormonal therapy (those with positive lymph nodes or with other features which the European community agreed at San Gallen at the time(s)--which varied--indicated chemo should be added...and other features. Once I pull myself together I will try to add those...

http://www.abstracts2view.com/sabcs/...u=SABCS07L_409

And his average followup as I recall was only around 3.5 years, so the graph will need to be updated (when I asked he estimated in 2 years, not next year)
so patience is required. I urged him to continue to publish this data as frequently as possible, as treatment decisions which rely on perceived risk are being made daily without access to good data, as Adjuvant online does not include her2status

I had recurrence in early 2005, 4 years after diagnosis in spring 2001. At diagnosis I was Stage 1, er/pr+ Her2neu+ 0/3 nodes with comedo DCIS and invasive ductal carcinoma tumor 1.6cm. Wish I'd had a mastectomy when first diagnosed [the surgeon told me lumpectomy is as good as mastectomy]. I had 6 x FAC and 30 rads. I had scans and mammograms. When I went to see my new internist she did a breast exam and thought she felt something. Went for mammogram & sonogram, with nothing visible. When films were compared with previous year, then I was sent in for biopsy. Recurrence was microcalcifications in same breast, close to lumpectomy scar. This time had mastectomy, no tumor, invasive cancer removed at biopsy 0/2 nodes, er/pr slightly positive, dcis comedo type, followed by 12 weekly Taxotere/Herceptin, finished up with Herceptin once every 3 weeks for a year. I was on tamoxifen for 2+ years then switched to aromasin [still am taking it]. Just recently I started going to a naturopath physician, and am taking dietary supplements to try and improve my blood chemistry and pH.