Oncotype score Under 18

Annieplaysguitar

Hi there, I'm hoping one of you lovely ladies could tell me about Chemo vs No Chemo with an Oncotype test score of 14.  I'm 52 and had a lumpectomy in Sept 2018, Diagnosed with HER2 Neg with 2 nodes positive. ( I was lucky to have an Oncotype test because in BC Canada where I am, we don't have that yet.)  I keep trying to find information about her2 negative - node positive  and having Chemo vs not having Chemo and the best route.  My Oncologist advised me to have chemo.  I saw ladies talk about graphs and that its not the best situation for some people to have chemo with low Oncotype scores.  Does anyone have any information on these graphs or more information for me to look at.  I would Love any help you could offer.  I'm supposed to let my Oncologist know what I've decided as far as Chemo goes by Monday and I'm looking for any information I can get.  Thank you. I really appreciate it

Meow13

The 2 positive nodes are kind of a concern but oncodx of 14 either suggest chemo isn't particularly effective or hormone therapy should suffice. Sounds like you need to make a choice. Many oncologist don't trust that hormone therapy works. It is a systemic treatment and is effective. Perhaps if your cancer is fast growing you may consider chemo.

My case was 2 tumors 1cm each slow growing, no nodes involved but oncodx of 34, I was 53. I chose no chemo even though it was recommended. I took AI drugs for 4 years. I just past my 7 years mark no cancer.

Good luck, your choice do what makes you more comfortable on treatment.

LeesaD

I had two sentinel nodes show micromets and I pushed for ALND and found two more fully positive nodes. So I had four involved nodes and an Oncotype score of 3. I did the chemo and originally it was supposed to be AC-T but when we got the 3 my MO changed it to TC four rounds as he was encouraged by the score. The chemo was manageable. Don't know if chemo was effective with such a low score but I always took an aggressive approach since the beginning to throw alll I could at it. I was 49 at the time.

Cpeachymom

Annie- this should be very helpful-

I was a 14 with a positive node. You can see the risk of death in the next 5 Years is actually higher with chemo. Keep in mind the score is based on doing the five years on anti-hormonal, it doesn’t work if you don’t take them. My MO still wanted me to do chemo, 2nd opinion at Dana Farber said no, so I opted out.

Best of luck with these tough decisions.

Annieplaysguitar

That is really helpful.  We have super similar circumstances, I am wondering if I could somehow get a better look at that graph.  Is there a way to PM you my email address.  I just talked to my Naturopath Doctor who said the statistics seem to say that having Chemo would benefit me 3 - 5 %, which is what the Oncologist said.  Although we don't have access to those statistics here.  Would it be possible to have a better look at that I wonder.  Thank you so much for your help and wonderful information too.  

Annieplaysguitar

Thank you LeesaD for your reply, that is the same Chemo they are wanting for me as well as the TAM and radiation.  I'm just not sure if my age being 52 and all other circumstances involved, if the Chemo is more harmful or helpful with the Oncotype score of 14.  I have been reading and reading and it seems there is this grey area between 11 and 18, and 18 and 25 too.  Low, intermediate and High.  Its even harder to access this information here in Canada as my sample had to be sent from Vancouver Island to California as we don't even do the Oncotype test here.  So I'm just wanting to make a good educated decision.  Thank you again for your awesome information.  

AliceBastable

I thought one of the points of the latest study (TaylorX?) was to include women with up to three positive nodes in the Oncotype scoring and not to assume chemo even with a lower score. I had a positive speck in the sentinal node, and my MO was thinking of having a port put in at the same time as my re-excision, but she got the Oncotype score back (17) in time and decided against it. There is a possibility that she may have taken into consideration the fact I needed another major surgery soon and that chemo may have added complications to it. So I don't know if the decision was based solely on the numbers.

Annieplaysguitar

I would love to see that information on the TAILOR X case study.... I can only read the one that was specifically for women who had HER2 neg in the breast only.   (They actually asked me to partake in the study that will involve radiation for the arm and breast or just the breast, but my score had to be under 18 - which it is and they just found this out yesterday)  But my dilemma is wondering if Chemo will benefit me in my circumstances or not.  Do you know where I could find the information on the node positive Her2 neg TAILOR X study... I cant find it and I've been looking and looking.  I only see the breast only information.  Thank you for replying.  

ShetlandPony

This is definitely the time for a second opinion from a major cancer center, in my opinion. I also don’t think it is fair for your oncologist to demand a decision from you when you don’t feel you have enough information. I think TAILORx only looked at node-negative. “In an exploratory analysis, TAILORx showed a chemotherapy benefit for early breast cancer patients aged 50 or younger with RS scores of 16–25. This subgroup represents about 8% of patients.” You are just 2 points below this, and two years older. I think whether you are pre- or post-menopausal could be an important factor in the decision.

Annieplaysguitar

Thank you ShetlandPony for your reply.  I really appreciate it.  Its pretty overwhelming for sure.   I would love another opinion, its just where to get it here...… and because they say there is only a safe window of 8 - 10 weeks to start Chemo after the surgery, my time is running out.  I was just giving my Oncotype test score on Wednesday....   so its been hard to become on expert on something I know nothing about in just days...….You know what I wonder... why in our day and age do we not keep statistics for ourselves on a separate data base for all Woman and all categories including people who opt out of Chemo or people who opt out of TAM or Radiation and see statistically where they are at, and what protocols they decided to use, and how exactly they are doing.  I asked my Oncologist about how do woman manage who opt out of Chemo but take Tamoxifin, or opt out of both.  She said they have no information on those statistics.  Knowledge is only power, I wonder why we don't look at all the aspects or keep that information somewhere....   just my thoughts, but it sure would be nice to have a look from all sides. .

BC2chick71

hello,

I don't post much but been reading. Thank you all for sharing your experiences.

I was diagnosed with recurrence Oct 1st. Had surgery Oct 24th (lumpectomy) on my reconstructed breast. Original diagnosis Feb 2016, had DMX with diep flap reconstruction in may 2016.... now this. I was also on tamoxifen for more than 2 years.

Now waiting a 2nd oncotype dx score to see if my MO wants me to do chemo this time. My 1st score was 14.

I have radiation in my near future for sure.

They are taking my ovaries Dec 3rd since tamoxifen didn't work.

I sometimes wonder if I should have had chemo. My original MO wanted me to do chemo but I got a second opinion and that one said no chemo.

Would love to hear your thoughts.

Annieplaysguitar

Hi BC@chick71, 

Thank you for sharing your experiences,  I'm really sorry to hear about your recurrence.  I'm thinking you are a strong girl and have been through a lot... 

I do think our Oncologists only want the best for us, that's why they've dedicated their lives to this pursuit.  Sometimes its a hard place to fall into, right down the middle line, and they don't have total stats yet to say exactly what to do.  There are always lots of factors that are involved and we are like snowflakes, none of us are the same.  Maybe if you had the chemo, this still would have happened, I guess we won't know.  I was told if I did chemo, there was a 0-3% possible benefit.  So, maybe 0%  Maybe and extra 3% (My personal situation)  

I think from what you're saying that the Tamoxifen didn't work, so It sounds like they are controlling it now by removing your estrogen maker.  Sounds like a safe bet.  I think your Oncologist won't steer you wrong.  They're going to be really careful with you.  Hang it there, I know its not always easy but they caught it.  Keep your chin up and do whatever it takes to keep healthy and strong.  Eat the right foods, don't have any sugar right now.  Talk to your doctor or a dietitian about food and nutrients.  Keep your mind healthy too.  Try to find little things in the day to make you smile and lift your spirit...  I'm thinking of you ~  (Are you from BC?)  

Salamandra

Hiya

I am not in this boat but I've been reading a lot of studies lately.

Here is a link to the official results of TailorRX: https://www.nejm.org/doi/full/10.1056/NEJMoa1804710

As far as I can see, the only place where they discuss node-positive cancer refers to a different study, MINDACT trial, which used mammaprint, and did not separate out the results for node positive versus node negative patients. It did find an overall benefit for skipping chemo with with a low mamma print score, even with a high clinical risk score (that's based on size, ki level, hormones, grade), but again, did not separate out node positive and node negative as far as I can tell.

From what I can tell we are still pretty early in the game of understanding breast cancer. We still don't really know how the spreading works (one recent study points to contradicting the practice of axillary mode removal, because it indicates that actually it may be pretty rare for cancer to spread linearly out of the nodes), we don't really understand how the biology of the tumor impacts treatment, etc. I think that helps explain why really good oncologists can give differing advice.

It makes it harder to make decisions. One could take the positive spin and say that it means that you can go with your gut and not feel bad about it, because the evidence isn't there either way. But not everyone's gut works like that!

Not having been tested, and not being a medical professional, I don't think my opinion is worth much. For whatever it is worth, I think I'd lean on the side of treating a cancer that has made it to the lymph nodes (either as micro mets or mets) as one that has proven itself capable of traveling. I don't think I would trust the current genetic knowledge of tumors to reassure me that the lymph nodes are the only place it started traveling to. I think I'd be inclined on the side of chemo.

That said, tamoxifen is also a systemic therapy. Also, I could definitely see being swayed by an experienced and smart oncologist pushing in the other direction. No easy answers, that's for sure. So I guess based on that I would say that everyone should feel good about whatever their choice of treatment was. We're all doing the best we can with the information we have. What more can anyone do?

Good luck and please update? AnniePlaysGuitar (love the name) how are you doing? Did you make a decision? Did you have a mammaprint?