negative nodes ending up with Mets - numbers?

Shelloz,

With your diagnosis and treatment, you are actually in very good shape.  We Stage 1, ER/PR-, HER+ women are at our highest risk for recurrence within the first three years,  After that the risk drops down to almost zero.

The reality here, as I see it, is we're asking cutting edge questions and having conversations about evolving reseach/treatment implications. We all hope our oncologists if asked an unknown, will do research and find answers. But we live in an imperfect world, which isn't to be derogatory to our oncologists, nor to be dismissive to new findings. In oncology, prospective randomized trial analysis is the gold standard to broad clinical answers. Undoubtedly, when more data is gathered and interpreted those older statistics on breast cancer outcome will be updated widely for all to see and for oncologists to discuss.

 Jan, here is the abstract I referenced:

Int J Surg Pathol. 2009 Jul 3. [Epub ahead of print] Gwin K, Pinto M, Tavassoli FA.

Oncotype DX is a 21-gene assay that quantifies the recurrence risk in estrogen receptor-positive breast cancer, which is expressed as the recurrence score (RS). Studies have shown that patients with a high-risk RS will most likely benefit from adjuvant chemotherapy, but there is no proven advantage for patients with a low-risk RS who still face an average recurrence risk of 7%. In this study, the relationship between the RS and the cell cycle-related antigen Ki-67 was assessed in 32 breast carcinomas and evaluated for a potential association. Comparison of the RS with tumor type, grade, and the Ki-67 proliferation index (PI) revealed an overall concordance. However, some tumors with a low RS revealed a surprisingly high Ki-67 PI. These cases may correspond to the 7% of low-risk RS carcinomas that recur. Therefore, the authors propose a combined evaluation of the RS and Ki-67 PI to identify tumors with high recurrence potential from the low-risk and intermediate-risk RS groups."

barbe1958, even after a bilateral mastectomy, they have to leave behind 2% of breast tissue. so we can get breast cancer again in that area. 

JanMarch -

I tend to agree with your oncologists opinion that the overall favorability of your other prognostic factors trumps the single oddball high Ki-67 - and now that you've got a low oncotype, even more so. There's definately some interpretation variability between pathologists and also between different labs which is one of the reasons there has long been controversy about using Ki-67 results prognostically.  I read somewhere that one of the problems with Ki-67 results is tied into the amount of time that elapses before the pathologist does the reading - supposedly, the longer it sits around before the test is done, the lower the Ki-67 score tends to be. So there's definately too much variability in the testing results and when a single prognostic factor is contradictory to all the others, like in your situation, it's quite possible that the rogue result is just due to faulty procedure in the testing process. I honestly wouldn't waste another moment worrying about it if I were you.

Another thing to understand is that the difference between luminal A and luminal B is not simply the difference in Ki-67.  Luminal B also tends to have overall lower percentages of ER/PR receptivity. Remember, it generally doesn't take much to be declared ER positive  (sometimes just a few cells depending on who's doing the reading) and so some who are said to be ER+ are only barely so. Since it appears that you've been told by the Oncotype people that you're highly ER +, it seems unlikely that yours is a luminal B breast cancer.  Trust the oncotype score to tell you where you stand with this. It's far more reliable than K1-67 results standng alone.

Thanks guys, but there has been another couple threads that freak me out. I had a very, very low tumour at 6 o'clock on the bottom of my left breast. Didn't want rads due to heart and lung risk. Okay. Then I find out that the position of the tumour is an indicator for recurrence and/or mets! I also had micromets in 2 nodes, but nothing was done as they guessed they were ITCs (isolated tumour cells). But, I want to know if they were axillary or mammary nodes. Apparently, that makes a difference too! If my tumour was so low, it probably wouldn't drain out of my lymph nodes in my armpit, but the ones under my breast plate. They don't do biopsies on that chain of lymph nodes.

So.....?

Zometa has been shown to reduce recurrence by 35% (all recurrence) or 30% (distant recurrence - mets) in premenopausal women with hormone positive BC.  Many believe that zometa will show similar efficacy in postmenopausal women in the Azure trial (still ongoing), but this has not been proven yet.  Also, I am not aware of any reason why it shouldn't help hormone receptor negative women as well, but this is way beyond my expertise.

Many women, especially those with a higher chance of recurrence due to aggressive cancer (Her2+) or node positive disease, have been getting zometa off-label for prevention of recurrence (including me).  For women who have very recently completed chemo, they may be eligable for the bisphosphonate trial (a trial of 3 drugs all in the same class as zometa).  If not eligible for the clinical trial it may be difficult to get the drug paid for.  Since most insurance will not pay for zometa treatment for prevention of recurrence, one possible way to get it paid for by insurance is to ask your onc or gyne to prescibe one of the 3 drugs being studied in the bisphos trial for prevention or treatment of osteoporosis as this is an approved use of this class of drugs. 

With bisphosphonates there is a small risk of a horrible side effect called osteonecrosis of the jaw (ONJ), This has occurred when zometa is given at high doses (higher than those tested for prevention of recurrence).  Still the theoretical risk at lower doses remains.  So for those with lower chance of recurrence, it may or may not be worth the small risk of ONJ for a reduction in BC risk, depending on which risk - BC recurrence or ONJ- you are more afraid of.

Papillary carcinomna is less aggressive (as is my HER- status), but it is still considered an invasive cancer. When comparing treatment it is sugggested to treat it as IDC (that's what the explanation on bco says as well). When I got it last year, there was only ONE hit on Google for it! (a 63 year old women presents with.....) There is much more info now, just 6 months later. My issue is still that I do NOT have an onc, had no rads or chemo or hormones and did have 2 positive (micromets) nodes!

That's what I'm stewing about....

Barbe,

Cancer is cancer.  You need to see an onc.  Especially if little is known about the type you have.  You really do need to see someone who specializes and is likely to have seen it more often than a general surgeon or gp. 

Ok I am finally going to post - UGH and throw another fly into the ointment, I hate doing it,  but discussion,  knowledge and support is what we are all here for, I am in the process of confirming (hopefully not confirming) bone Mets,  I had 6 nodes removed in 06 excisional (all clear),  now with some "stuff" on my plate awaiting a few tests to be scheduled,  reading a lot and asking onco a few questions,  I have read that BC that mets to the bones is most commonly spread via the blood stream not the lymphatic system -  HUM,  Imagine my shock when reading that (I saved one recent article and have not been able to locate it in my PC - still looking) so of coarse I asked onco,  he said that is in fact true in many cases.  So now I wonder why all woman DX with invasive BC are not at least given the option of chemo???? I think sometimes why did I even bother having nodes removed,  AHHHHHHHHHHH BC YOU SUCK!!!

Cathi - That is exactly what concerns me with that "evidence of lymphovascular involvement" thing.  I posted the thread about Itching & Cancer.  I was itching long before diagnosis and still have it to some extent.  I definitely believe it is related to the cancer and am always thinking those damn cancer cells are floating around in my system.  I would be interested in that article if you find it.  I hope you you don't have bone mets and will say an extra prayer for you. 

Sue

What deoes it mean when your red and white counts are a little low?.....

Agree, of course a very personal decision. But from the moment I was dxed I wanted a bilat mast, chemo, herceptin (even before I knew I was agressive), Bisphos trial, whatever is out there including supplements and natural remedies that I could say I have done everything to beat this. I know so many later stage women that had chemo and are fine today when they even had vasc invasion

My Stepmom: 4 nodes (act) 14 year survivor

My Aunt: 8 nodes ACT 22 year survivor no hormone meds

Friend 7 nodes Her2 +++  ACTH 5 year survivor

Friend 9 nodes 8cm tumor HER@+++ 6 year survivor

Then my aunt she had one node, only took tamoxifen died at 5 years.

I know this is not a scientific sampling but it is my reality, everyone I know that has been ok did chemo. Of course there are many that have done it that have recurred as well but you only get one chance.

I am respectful to everyone's decision and understand why you would not want to take all those chemicals on but really do the research!

Cathi, hoping and praying for you that it is not bone mets.

Cathi,  Fingers are crossed here as you await your tests, no mets, no mets, no mets!  HUGS! 

hollyann,  I'm so sorry that this is happening to you.  I didn't know doctors could refuse chemo to any patient with invasive breast cancer who wants it.  Also, a bone scan is not such an expensive test, it seems it would be normal to rule out mets in your case. Can you get Zometa?  Maybe you can qualify for it if you have bone loss. Hoping for good things for you.

Hollyann, I am sorry about your situation. I am in Canada and as you and everyone knows, we do not deal with insurance companies when it comes to our health care. If it is needed it is given, no questions.

I assume that you are on some antihormone medication? Did you have rads? Anything is better than nothing with this stupid disease. I agree with swimangel, BC is tricky and sneaky. There are no rules. Wish there was.

I agree with Gitane too. Ask about the Zometa not only to prevent bone mets and other mets, but to strength your bones. But then you would need bone tests/scans and you have no insurance...ugh, endless cycle.