Advice: Elevated markers Stage 1A tumor

[Sheila]

Grace Anne

Tumor markers are NOT reliable for everyone...although mine were in the normal range, I had a recurrence to the supraclavicular nodes. My original diagnosis was somewhat like yours, 7mm IDC, clean nodes, Her2 3+, ER- PR -, LMRmastectomy, no chemo, no Herceptin (5 years ago it wasn't approved for Stage 1). I have been on Herceptin 3 1/2 years now, as stage 4 with Xeloda for 9 months. If you are concerned, get the scans done, esp. the brain MRI....but many on this board has false positives in their tumor markers....so you are not alone. Still the stress of what if, would make me go for the scans for peace of mind! Hope this helps.

[skeetur]

Hey, Grace!

Sounds like we have very similar diagnoses. I had 2 foci of IDC with the largest at .3 cm (3 mm). I didn't get clear margins on the DCIS surrounding the IDC on my lumpectomy on 12/27/06 so just had a re-excision this part Tuesday (1/23). SNB was clear. I'm waiting on pathology report for this re-excision. I haven't had FISH done yet but IHC was 2.8+.

I haven't seen the man who will be my oncologist yet but my sister spoke to hers about me. (She was dxed with ILC 2 cm with 1+ node last January - her mastectomies were in March.) He said that based on the San Antonio conference, he doesn't use tumor markers anymore.

His recommendations "unofficially" for me were radiation treatments and hormone therapy. In my case, because of familial uterine cancer he would recommend shutting ovaries down chemically and then give me an A.I. rather than tamoxifen.

Good luck,

Skeetur

[Hopeful]

Grace,

I am stage I also. When I was first diagnosed, my surgeon wanted all kinds of tumor marker tests. I asked both my internist and onc about them, and they both told me the tests were useless in stage I bc, not to bother due to false positives. I am coming up on my 9 month anniversary since dx, and my surgeon is insisting on these blood tests. I am considering having my onc call her to discuss. I am adamant I do not want them done. Your experience adds to my conviction.

Hopeful

[Adriana Mangus]

Hi again Grace: In my situation my markers were kind of "stable" for about a year (24.5), I decided to wait and see-in November I had a chest scan and it showed the tumor was growing back -almost the same size as the one when I was originally diagnosed (recurrence) in 2003,-mets to one organ, only. I then had a CA2729 test done and indeed the marker was up to 53!. So in my case the CA2729 is proven to be a useful tool. My oncologist was not too worry to have waited this long to put me on chemo (Xeloda, oral med) since you have to keep your body healthy and ready for when the big one comes.

In my opinion, you should talk with your onc. first, but I was in your shoes I will definitely go for the chemo. It's not as bad as it used to, yes, you're going to lose your hair, but it will come back, plus you are going to have lots of fun wearing different wigs!!! I hope this helps.

[Lani]

If your serum her2 WERE drawn BEFORE the herceptin was started a repeat serum her2ECD AND approx 3 weeks later, and decreased 20-25%--it is regarded as a sign of herceptin efficacy in the metastatic setting (serum her2ECD is rarely elevated above 12 in the nonmetastatic setting as far as they know--there was just an article published in December confirming something similar in the neoadjuvant setting) according to a paper with Dr. Slamon among the authors.
If yours was drawn after starting herceptin and at no other time, repeating it counldn't hurt. If yours was drawn before starting herceptin, retesting it would probably make sense.

There are two new papers (one out today) on prognostic factors for herceptin efficacy--one based on genes and chromosomal evaluation claiming the length of the piece of DNA on which her2 sits which is amplified and whether there are simultaneous chromosomal abnormalities on chromosome 1 and 10 help predict the 40% of Her2(FISH+) amplified patients for whom herceptin produced a beneficial effect in the metastatic setting. The second paper (out today) evaluated the relationship between positivity of other her family members, phosphorylation of her2 (p-her2, the activated form), and other biomarkers is based on testing by IHC(much easier to find available, although still done by only a few labs) and
clinical benefit from herceptin ie, once again how to predict which 40% will benefit from Herceptin. Interestingly the second article was coauthored by Martine Piccart of Belgium (head of the HERA study) and someone from Roche (who sell herceptin in Europe). Should they be able to predict herceptin sensitivity, they may lose some herceptin sales, but European governments may be more welling to pay for it for fewer people(those who it is more likely to help) and hopefully will look into using something else
(?lapatinib) for the others.

Hope this helps!

[Lani]

with herceptin treatment:
Kong SY, Kang JH, Kwon Y, et al. Serum HER-2 concentration in patients with primary breast cancer. J Clin Pathol, 2006. J Clin Pathol, 2006. 59(4):373-6
ABSTRACTOBJECTIVE: To evaluate whether serum HER-2/neu (HER-2) concentration is a valid index of HER-2 status in women with primary breast cancer, and to establish a normal reference range for serum HER-2 concentration in Korean women. METHODS: Serum HER-2 concentration was measured and immunohistochemistry (IHC) and fluorescence in situ hybridisation (FISH) carried out on tissue samples from 86 consecutive female patients. The results of the three datasets were compared. The cut off value of HER-2 concentration was determined from the mean +2SD values derived from the serum of 93 healthy volunteers. RESULTS: The IHC and FISH data were significantly correlated (p<0.01), but neither showed significant correlation with the serum HER-2 data. The cut off value of serum HER-2 was 10.2 microg/l, and the serum HER-2 concentration of patients with primary breast cancer ranged from 5.0 to 17.5 microg/l. Only five patients had a serum HER-2 value above the cut off value. CONCLUSIONS: Serum HER-2 concentration cannot be substituted for IHC or FISH to evaluate HER-2 status, nor can it be used as a diagnostic tumour marker in primary breast cancer, considering the low prevalence of serum HER-2 elevation.

[Lani]

on serumher2 ECD levels as not enough is known. These studies have not been done in enough people with enough different types of her2+ breast cancer to be able to say that and certainly not in the premetastatic setting.

Even if your tumor recurred or grew while on herceptin is not felt to be a reason to stop herceptin in a her2+ patient--they just add something else to it figuring the cancer cells have figured away around the blockade by using another pathway (through the backdoor). The question I think you are asking is how small does a tumor which is her2 positive have to be to decide not to treat it(due to tiny to nil chance of recurrence). I don't think that answer is known. There have been people posting here who had only her2+DCIS with MICROinvasion who went on to Stage IV.

You might want to get in touch with Jean. Although her tumor was tiny her OncoDx test had a high recurrence score and her ki-67 was rather high as I remember. She consulted Dr. Slamon who recommended chemo and herceptin. She tested negative for TopoIIa and got TCH I think.Dr. Slamon did not think the OncoDx test was necessary, feeling ER,PR, her2 and ki67 together give pretty much the same information.

The days when tumor size was felt to be the only parameter as to whether/how much to treat it seem to be over. There is even a clinical trial of herceptin for DCIS (noninvasive pre-cancer). It seems they know think it is the genetic make-up of the tumor which determines its behavior. Of course if you catch one later, when it is bigger it has had more time to spread.

I think it is a shame they do not do more bone marrow biopsies looking to see if the cancer has already left isolated tumor cells there. These are felt to be the slow growing cells which cause recurrence.

They are looking into whether circulating tumor cells could also predict recurrence, but this ,so far, does not seem to be as accurate of a predictor of poor prognosis.

If you really need to be convinced whether or not you need treatment and how likely it is to help, perhaps some testing of biomarkers at Targeted Molecular Diagnostics, might help. I think they test phospho-her2 and PTEN
Robin P has posted on them.

Hope some of this helps!

[MJo]

My tumor was .55 MM (1/2 c) with neg lymph nodes. My oncotype score was 32, which put me at the beginning of high risk of recurrence. I don't know my Ki-67, but my mitotic score was 2: intermediate. Oncotype was an expensive test and I agree with Lani that a combination of cheaper tests probably gives the same information. I chose to take chemo and herceptin. I am glad you tolerated the benefit of two taxols. I hope you will consider continuing Herceptin. I don't think we know enough to take risks with Her2 yet. In the future, women will be spared unnecessary treatment, but that's in the future.

[tousled1]

Grace,

Don't put too much faith in tumor markers. When I was first diagnosed as Stage III my tumor marker was only 15.3 - well within the normal limit! I now have the Bayer Serum test done every 12 weeks. My first one was 10.1, second 9.5 and my last one 8.2. I'm half way through with my year of Herceptin and can't wait until June when I'm finished! I've been gaining weight, running nose, dry eyes, boen/joint pain, etc. I figure I've made it this far so I can make it to the finish line.

[sassy]

Grace,

Quote:

"One last bit of advice from any of you out there with a similar issue, and I?ll stop posting for a while. "

Please don't stop posting or feel like you are asking too many questions. Thats what this board is all about. The knowledgable people on this board have been my primary source of information and a tremendous source of support. It's wonderful to be able to ask questions of and talk to people who have "been there".

Best Wishes to you and please come here for support anytime.
________
Susanalady live

[chrislmelb]

I agree with sassy, post as much as you like because that is what this board is all about.
Take care
Christine