Anyone low oncotype dx..and then recurrence?

shejoh

my oncotype score is 8 which is very low and very good...My oncologist says he is stil in a green area about a sure treatment..as my age is 34..the data for the oncotype dx is from older patients..but if you look at that research my benefit from chemo is only 3%. he wouldn't recommend chemo..but just tamoxifen,zolodex and zomata. my question is if cancer has spread at cellular level...it's not going to show up in any test until it grows a little bit. I had grade 3 cancer. all nodes were negative..anyone with low oncotype dx with recurrence?  thanks for your replies

Sukiann

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

NancyD

Bumping it up to help...but you might get a few good responses in the Recurrence section.

otter

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 

shejoh

low oncotype score is 0-18

intermediate score is 18-30

high score is 30-100

I was wondering if there is anyone in this breastcancer.org community who had a low oncotype and a recurrence...

thanks for your reply....take care

shejoh

Thanks for bumping it up ...where do I click to see it?

PT63

I am not sure if you will get a good answer to your question yet.  The Oncotype is fairly new and I don't think that all of the data is in yet.  It appears from some of the other threads that more people are using it than the original test was trialed for.  When I had it done the criteria was for node negative, less than 1cm and estrogen positive.  I think that some others are having the test run and they fit different criteria.   I don't think the test was routinely done until 2 or 3 years ago - so it may be hard to find someone to answer your question within this small of a time frame.

Anonymous

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

SandyL

I was curious when I read your post as I wasn't familiar with the oncotype testing, so I read up on it a little in the Symptoms and Diagnosis section of this site.  I've had bc twice, in 1986 and 2002, but both times my tumors had no hormone receptors at all, so I was very negative.  Also, the second time I was diagnosed had four positive nodes, so I most definitely didn't fall into the category of eligibility for oncotype testing.

However, the first time I was diagnosed in 1986, I was the same age as you, 34.  Well, to be accurate, I was 34 when I discovered the lump, but had turned 35 by the time I had the biopsy.  My surgeon at that time didn't recommend chemo, but after I did some research on my own I questioned him further, and only then did he admit I was borderline for chemo because my tumor was er/pr negative.  He referred me to an oncologist, who strongly encouraged chemo.  He also  encouraged me to get a second opinion, but noted I should be prepared to get a completely different opinion because another oncologist might advise against chemo.  I really didn't want to have chemo, but I went with my gut feeling and opted for it.  I feel as though I made the right decision because here I am almost 23 years later.  I didn't have a recurrence in 2002, but a new primary.  I had a second mast, more chemo, and radiation.  Again, here I am almost 7 years later and so far I've been lucky and haven't had mets or a recurrence.  

You mentioned your oncologist took your age into account when making his recommendation for no chemo, but I wonder if other oncologists would make the same recommendation if you went for a second or even a third opinion?  Younger women are more apt to have a recurrence, mainly because they're more apt to live longer, which gives any cancer cells that might be hiding somewhere more time to develop and spread.  I think it's wonderful they have more testing options to determine whether chemo is necessary, but I wonder if I'd bet my life that I'd be one of the many who don't need it, or one of the few who wish they'd opted for it.  

I don't envy you your decision.  Perhaps you should consider going for another opinion?  Whatever you eventually decide, I wish you good luck and a long, cancer-free life.  

Sandy 

Anonymous

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

kaitig

Sandy - off topic too... made me feel so good to read your post.  I was dx'd in 1994... with second primary november this year.  So glad to hear you are 7 years post the second one! 

Beesie

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.

Anonymous

Bessie - I saw that on the same thread - so hope it is false.  However, I really do know that gal that it did happen to. This is recent. My thinking (hope) is that if she had chosen to do tamoxifen at the least she would not have mets right now.

I had also read that 20-30% in the Susan Love book, but once again, it is probably old stats and you are right the long term survival rates are so much better than years ago.

I am so grateful that my nodes are negative, but the invasive part of my diagnosis does get to me at times.  One of the reasons that reading about women such as Sandy makes me sooooo happy!

Thanks for your input!

Susan

Beesie

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!

Ivy

Shejoh, I just want to say I'm really happy for your low score; and to reiterate that since Oncotype has only been around 4-5 years, that even ladies who got testing the first year possible would only have had a few years since then to have a recurrence or not.

I had a 20 and my onc and I agreed on no chemo.  I truly didn't want it.  I know other people feel differently and want to use every weapon possible.

I sure wish you well!

shejoh

To all Friends

Thank you so much you all...for the sincere and very informative responses...right now I decided against chemotherapy. going to take tamoxifen, zolodex and zomata..I will be having MRI's evry 6 months..for follow up

.I wish you all good luck and very healthy life....this website and the girls here are are life savers... 

Jamie6

Shejoh,

You posted a very good question, and hopefully this post can roll on for years and eventually get some feedbacks when oncotype testing has become the norm within the next few years.  I had to fight my insurance to cover for it (still fighting, actually - lol), so I know it's not something everyone gets as a "given" even within certain criteria (node negative, ER+).

Just curious, are you being prescribed zolodex and zomata at the same time as Tamox?  If so, why?  I didn't hear my oncologist mention those two in conjunction with the hormone treatment, and I was under the impression those are used in treatment of other types of cancer.  Then again, I'm new to cancer, so I don't know much about any meds - LOL

shejoh

My oncologist has prescribed Tamoxifen now. and I started taking it..I am waiting for a test which is done see how responsive is Tamoxifen in my body..if my body doesn't respond to Tamoxifen then I have to  remove ovaries.

This a very new test which came out as result of a research done to see why some women had recurrence with Tamoxifen..he said I have to take zolodex injection which further reduces the oestrogen production once every month for 2 years and zomata twice a year as zomata has anticancer properties and it also increases bone density. hope this helps you...if you need further info let me know

A thread on this topic

http://community.breastcancer.org/forum/55/topic/706754

a resource about the combination therapy

http://ww5.komen.org/ExternalNewsArticle.aspx?newsID=41015

http://www.searchmedica.com/xmlresource.do?c=on&ss=defLink&p=Convera&rid=ds1-va:p:1013t:80686481032:642943ef935afb49:49c48432&t=pubmed

Jamie6

shejoh,

Thanks for the info/link.  Still so much for me to learn about all these things..... ugh..!

brenda63

What is BRAC tests?

Beesie

Brenda,

It's the BRCA test, which is a test to see if you carry a mutation in the BRCA gene.  It's a simple blood test but the analysis is very complex - there are lots of variations in the gene.  Some variations clearly represent a inherited genetic mutation which significantly increases the risk of getting breast cancer or ovarian cancer (and prostate cancer for men who have the mutation).  Other variations are questionnable but it's not known yet whether they increase risk or not.  Only about 10% of breast cancer is caused by the BRCA gene mutation.