Anyone low oncotype dx..and then recurrence?

This is a good question. I'll bump it up for you!

shejoh, according to the Genomic Health website, an Oncotype score of "8" corresponds to a 10-year risk of distant recurrence of 6%.  BTW, "distant recurrence" = metastasis.

That means if you asked 100 women with scores of "8" whether their cancer came back as metastatic disease, only 6 of them would say "yes" ... and you would need to wait 10 years to get that many.

otter 

This is a good question, and  i agree with PT63 - not sure if you will find someone that has had this experience.  I am 44, so older than you (although I feel young for bc!) and my score was 23.  So, I am doing chemo...happily.

My doctors (two opinions) had me take the BRAC tests, and I am negative. Have you taken that test?  Are you done having children?

Blocking hormones is important for those of us with er/pr positive cancer.  That is one of the reason your age is a possible issue. I have read that tamoxifen or the A/I are really the key to avoiding a systemic recurrence.  That said, I have also read that 30% of node negative women have systemic recurrences.  I know of one woman, on a different board.  She is 49 but had the same stats as you and I.  Node negative, small 1cm tumor, es/pr +, her 2 - and I think grade 2. She did not have the oncotype test two years ago, do chemo or tamoxifen.  She now has bone mets.  She only did alternative, and regrets it now.  Now, the 30% stat is a general statistic and I would assume includes triple negative and her2 positive and may even be a stat from before Herceptin so I really try not to get to worked up on stats.  However, it is hard not to.

I would get a second opinion.  It is great to have that low of an oncotype score - but it is based on older women that have less exposure to hormones (at least that is what I understand).

Good luck with this - hate these decisions - get a second opinion, and if they concur, then go forward.  It is great that your score is so low.  I would have comfort in that.

Susan

Sandy - this is off topic, but thank you for posting and for sticking around!  When I read posts such as yours it is so wonderful.  You have fought this twice, won both times and I can tell have a wonderful attitude about it.  You are an inspiration.  When I read posts like this I feel like I will be okay.

Susan

Susan, I'm curious about where you heard that "30% of node negative women have systemic recurrences"?  There was discussion about this recently on another thread (http://community.breastcancer.org/forum/102/topic/731417?page=2 ).   I looked everywhere to try to out whether this was true and there was nothing that I could find to support this.  And in the end it turned out that the statement (from Dr. Susan Love's book) had been misquoted or misinterpreted. If you have a different source for this information, I'd be very interested to read it.

As for Dr. Love's quote, what she actually said is that "20% - 30% of those with negative nodes have some spread elsewhere".  What this means is that at the time of diagnosis, in 20% - 30% of cases where the nodes test negative, in fact a few cancer cells have already moved into the body, either undetected through the nodes or possibly through the bloodstream (vascular invasion).  The larger the tumor and the more aggressive the tumor, the more likely this will happen. This is why chemo is pretty much always recommended for those who have tumors that are 2 cm or more in size (regardless of how favorable the pathology may be) and those who have smaller tumors that are triple negative or HER2+.  This is also why a test like the oncotype can be very helpful for those who have smaller tumors (in the 0.5cm to 2cm range) that are borderline for chemo.  The role of the chemo is to find and kill any stray cells that have already spread, so that mets never does develop.  This means that by giving chemo to those higher risk women who are node-negative, the percent of node negative women who develop systemic recurrences would be less than the 20% - 30% who start off with "some spread elsewhere".

Of course, as we all know, there are no guarantees.  Someone who appears to be lower risk could end up with a distant recurrence.  And no treatment - not surgery, not radiation, not chemo, not the AIs or Tamoxifen - is successful at stopping all recurrences.  But with long term survival rates where they are, it doesn't seem possible that 30% of node-negative women will have systemic recurrences.

Susan, yes, if your source of information was that other thread, then what you heard is definitely false.

Having said that, it will happen that someone who has a small, low grade tumor and negative nodes ends up with mets.  That's a fact.  Even if there is only a 1% risk (and the risk is probably a bit higher than that), this means that for every 100 women with this diagnosis, 1 will get mets.  So consider that about 200,000 cases of breast cancer will be diagnosed this year alone in North America.  Approx. 60% of these women will be node negative.  If we say that 1/3 of these node negative women have small, low grade tumors, that would be 40,000 women.  At just a 1% risk level, 400 of these women will eventually get mets.  So it's no surprise that you're run into someone who had this happen. 

As for whether or not Tamoxifen would have made a difference, there is no way to know.  It might surprise many to find out however that the odds that Tamoxifen would have helped in this situation are a bit less than 50/50.  The Tamoxifen clinical trial results put the benefit, in terms of disease free survival, at 42%:  "Among women with ER positive or unknown breast cancer and negative nodes who received about 5 years of treatment.... the recurrence-free rate at 10 years was 79.2% for NOLVADEX (i.e. Tamoxifen) versus 64.3% for control." http://www.rxlist.com/nolvadex-drug.htm#ad  What this means is that among those women who took Tamoxifen for 5 years, after 10 years, 20.8% had had a recurrence (distant or local).  Among the group of women who did not take Tamoxifen, after 10 years 35.8% had had a recurrence. That's the 42% reduction in recurrence over 10 years.  That's really good - and this is why Tamoxifen is prescribed as much as it is - but it does mean that less than 1/2 of the women who take Tamoxifen actually benefit form it, and many women who take Tamoxifen will still have a recurrence.

Unfortunately nothing about this is simple or clear-cut!

What is BRAC tests?