In your 40's with low Oncotype score, what was your decision?

Aw, thanks, Gracebead!  May I say that it is a gorgeous day because I haven't remembered or thought about cancer until right this minute checking in on the boards!  Now that's what I'm talking about!

Annicemd- I was offered chemo today, but he basically said the only thing I would probably get from it is side effects. I am going to try to get into Dana Farber for a 2nd opinon. It was a very depressing day.

Dianarose I will be very interested to hear the conclusion of your second opinion. We are currently on the cusp of using oncotype for node positive disease but long term data are lacking. So, in my opinion, with your stats, to say that all you will get from chemo is side effects, is extremely flippant.

When I was going through these sorts of dilemmas I used the Johns Hopkins as the expert website where an amazing nurse called Lilley Shockney (who has had BC twice herself, and BMX) provides a summary answer to these sorts of questions and that would give you a quick and free third opinion! You would need to include as much info as you can in your question

You must be feeling awful with all the uncertainty, we all feel for you. Whatever the final decision you will feel so much better once you have a firm plan.

((((Hugs))))

DianeRose, my hospital had a chart that gave all the high risk factors that would make them recommend chemo.  I want to share them with you and what they said about Oncotype.

• Grade 3--considered unpredictable even in light of Oncotype
• LVI
• positive nodes
• HER2
• Triple Negative
• Size

I'm not your doctor, but mine said the Oncotype is not tested well in younger women.  She also said it's just one of the decision making tools, and any of the above are high risk factors for recurrence.  NCI rankings mean they rely on hard and fast studies, and are slower to accept new protocols (like my one opinion that said the Oncotype trumped all).

You are in a TOUGH situation!  I am so sorry. 

There's another interesting thing to consider, and that is the cumulative protection of chemo and hormonals.  Your doctor can talk to you more about this, but my combined therapy gave me a 5% advantage over either chemo or hormonals alone.  I'll take it.  I can live with premature menopause and back pain.  I can't live with a deadly recurrence.  The chance of chemotherapy precipitating another cancer are fairly minimal at this point as far as I understand from my research.

For me, the Tamoxifen is far more problematic.  It's a chemotherapeutic agent, after all.  It is causing joint pain, which sent me to TWO, not one additional MRIs with contrast dye.  And now...on to the pelvic ultrasound for fibroids and a cyst, which I'm really clear have been caused by the drug (pelvic ultrasound completely normal in past).

I think folks get very caught up on the chemo.  It's very, very serious medicine.  But then again, so is Tamoxifen, and we take the stuff for five years.

A couple months away from 44 at diagnosis.  1.4 cm (25% of it DCIS), Stage 1, Grade 2, no lymph node involvement, no lymphovascular invasion, and HIGHLY er/pr+.  MO said I was on the "chemo fence" and the oncotype score would help us decide.  My oncotype came back at 15.  We both felt that tamoxifen would be my weapon of choice (well, that and the BMX  1 1/2 years out from my surgery and have zero regrets.

I hope you are able to make a decision and find peace with it.  

I was 48 when diagnosed with an oncotype of 11, saw three oncologists, two were quick to say no to chemo and one said why not - the usual, you're young and healthy and hit it with everything we've got. But the relative percentage benefit was extremely small. While everyone talks about getting through chemo okay, people fail to remember that even if you make it through fine, there is a very real risk of a secondary cancer such as leukemia developing later because of the chemo and that type of leukemia is not easily treatable. While the risk is small, if it is greater than the benefit one might get from adding chemo into the mix, then for these early stage cases with low oncotype scores, I don't think it's as simple as saying hit it with everything you've got since you could be setting yourself up for something worse down the road. I think people really need to think about all the benefits and risks very carefully - not just the immediate side effects. In my case I would have been more worried about the higher likelihood of a more problematic cancer than the small benefit chemo might have offered. Bottom line is none of us, especially in these borderline cases, will ever know if the chemo helped keep the cancer at bay or if we didn't choose chemo and cancer came back would the chemo have made any difference. You just have to really think through all the possibilities and work with trusted medical professionals to reach the decision that is right for you. 

Voraclousreader - From my reading of the original journal articles, the data on the Oncotype test is excellent thus far and is a huge leap in our understanding of mRNA expression as relates to aggressiveness of the cells and ability to metastasize.  The number enrolled in TAILORx should tighten up the data.  For example, my Oncotype score (14) gives an average rate of recurrence of 9% with a confidence interval between 6%-11%.   This means the true recurrence rate could be as low as 6% or as high as 11% based on the data before TAILORx.  To me, that is still a big spread.  Here is a related quote regarding TAILORx from Clinical Breast Cancer, Vol 7, No. 4, 347-350, 2006 'Although a trend favoring the addition of chemotherapy becomes evident at an RS [Oncotype score] of approximately 11 when the risk of replapse is analyzed in a linear fashion, the 95% confidence intervals completely overlap in the 11-25 RS range' Also, it says 'An RS of 11 is associated with a risk of local and distant relapse of approximately 10%, a threshold that has been typically used for recommending adjuvant chemotherapy'.  So the jury is still out in the low range, in my opinion.  It may be that once the confidence intervals are tightened that they will change the low score at which chemo is recommended.  Please understand that my MO doesn't think that will be the case.  However, she also said that historically without the Oncotype score the chemo would be considered to give someone with my characteristics a 2-3% reduction in distant recurrence.  This is the reason I was sleepless for so many nights trying to decide whether to go ahead with chemo or not.  I cannot say why she indicated that those in the medical field were the only ones she had as patients that asked for chemo with a low Oncotype score.  Note, this is not a generalization, just her panel of patients she was referring to and please don't misread my comment in that regard. There is no data that indicates that healthcare professionals opt for chemo more often.  She just indicated that in HER panel, they tended to be the only ones with a low Oncotype score who did (and no doubt those that asked for chemo were a small subset of healthcare professionals with low oncotype scores). Please don't think I am advocating chemo for low oncotype scores...I'm definitely not and I wasn't going to ask for it myself if my score was below 10.  I struggled terribly myself with this dilemma, and the concerns of long-term effects (I did look at the primary papers there too and my MO, who was in the original trials of my drug combination, said that there is no increased risk of leukemia for me above the national average).  Still, will I be really upset if I end up with leukemia, you bet!  So, there is no easy answer here which is why I say, go with your heart and your gut and don't look back!

Thank you Slak for the clarification. Those figures that you mention and the quotes regarding the range were the same ones that I zeroed in on as well. Most patients aren't aware that there is a range for each score and like you mentioned with the 10% mark usually being the number at which chemo is offered. Without a crystal ball, no one knows at this time where the range will tighten up. But I just wanted to be clear that at this time, the score at which chemo is being recommended has not changed despite TailorX lowering the bar. I also am glad that you were able to clarify what your doctor is doing and that it is based on her opinion only. I respect that, as every MO is entitled to their own opinion based on their own knowledge and experience. Furthermore, I respect how you based your own decision. I wish you well.

Just to throw in my story- i am a medic, decided not to have chemo based on node neg, low onco scores (8 &1), less than one cm primaries ( although 2 of them) and her2 neg. if these stats were any different or if I had been even one node positive I would have opted for chemox defo. As no chemo, I am having ovarian suppression with zoladex as accumulating data suggest that at least some of the benefit of chemo in early stage premenopauseal BC is likely to be related to the chemopause it induces, although the definitive study is a long time off being published. It is a very fine line between risks and benefit of treatment for early stage BC. The fact that we have all had different experiences shows that there is still a lot more that our oncologists need to learn about this disease!

Best wishes

Did your MOs say how much chemo was likely to help you? Because my tumor was 0.5cm and grade 1, my MO said that my "benefit" from chemo would be approx. a 3% reduction in my risk of recurrence.  She said grade 1 tumors don't benefit as much because they are slow growing. I also had very wide margins, 3 nodes removed with no signs of mets, etc. So her analysis: not worth the possible SEs of chemo.

But because I'm highly ER+ she strongly recommended tamox. So all the characteristics and the complete Tx plan matters. FWIW, I was 46 at time of Dx. Originally they thought the tumor was grade 2 almost 1cm, so all my docs were saying it's likely that chemo would be recommended because I was so young (in cancerland, anyone under 50 is considered young to have cancer). So when it came back smaller and grade 1, it felt like a miracle.

That's smart to get 2nd and 3rd opinions. FWIW, I've heard of members here getting three opinions and they all come back different: definitely yes, definitely no and maybe. So two "no's" is a good sign.

Good luck with this. That waiting period prior to deciding about chemo was one of the most stressful periods of this experience. (((hugs)))

LtotheK, thanks for sharing. Do you know the size of your friend's tumor (and your own) and HER2 status? My understanding was that these factors also contribute to the score. 

I reread some of the the official website and it said the clinical data is for post-meno women (arg! again). Did you happen to come across data for pre-meno women? Just curious.

Hi Peggy,

My friend's tumor was just shy of stage 2, she came in at stage 1.  She was ER/PR+, HER2 negative.

What I found was, despite the fact doctors say there are some factors that predict Oncotype scores, more people than I would have expected seem to break the mold.  In my group of three women who did treatment simultaneously, both were ER+ HER2-, grade 1.  One had an oncotype of 22, the other 54.  My grade 3 came in at 12.  

I also remind myself it's a good idea not to rest on my Oncotype laurels.  I truly believe based on the extensive research I did that it is part of the treatment decision making, not all of it.

cookiegal- where are you getting the info on the chemo benefit for node positive starting at 20.5? My score came back at a 6 and the mo is still pushing chemo, but telling me he isn't sure if all I will get out of it is baldness and side effects. I know I have a lot of positive nodes with this dam lobular shit, but I don't want to do chemo so he can vacation in Hawaii with his family at my expense. He is justifying it because there is no data with that many positive nodes, yet he says it is the same cancer used for the onco that is in my nodes. My head hurts from thinking. I just want it to all go away. I am not in my 40's. I am 51. Does age matter with chemo?

Dianarose, yes, 50 is considered young since we have such a long life expectancy (compared to patients Dx'd in their 70s or older), hence doctors feel that, all things being equal, young women will "benefit" more from chemo.  I believe that the node status is very important when deciding chemo. I'm not an expert on the Oncotype, but my understanding is that originally they didn't recommend it all for anyone with positive lymph nodes and it's only recently that they considered it for some patients with just a couple of positive lymph nodes. So based on the info you provided, it sounds like the number of lymph nodes is a major deciding factor. (and I bet some docs, like my MO, wouldn't have recommended the Oncotype because the result wouldn't change her recommendation). Another tool that some patients use is the CancerMath website. You can input different characteristics of your tumor and get their estimates. FWIW, it sounds like you don't trust you doctor very much--maybe time for a second (or third) opinion? Your insurance should pay for second opinions. FYI.

LtotheK, thanks for sharing that other info.