Anyone have a low Onco type dx with positive lymph nodes???

Giazuc

Anyone have a low Onco type dx with positive lymph nodes???

Giazuc

Hi sisters,

Wondering if anyone else had a low Onco dx with micro lymph node invasion and didn't do chemotherapy? My Onco dx score came back at 12. I had a 1.9cm tumor with 2 lymph nodes with micro invasion. Highly ER/PR positive, HER negative. Grade 1 tumor. My oncologist decided I didn't need chemotherapy but would need to be on tamoxifen for 5 or 10 years. I'm scared and hope it's ok that I didn't do chemotherapy.

Also I've been taking tamoxifen since June 10 and got my period in June but haven't gotten any more menstruations since then. Is that common with taking tamoxifen?

Hope to hear from you. Thanks guys.

coraleliz

Giazuc- I had 2 positive nodes(3mm) associated with my grade 1 tumor. My onco type came back 4. I did not do chemo. My periods stopped for the most part on Tamoxifen. About once a year I get one. There are others who will probably be by soon to share their stories. Positive nodes meant chemo in the past but this is being questioned/changing & researched further.

mmtagirl

hello, my onco was 16 with one positive nde.  I enrolled in the RxPonder clinical trial for er/pr+ and 1-3 nodes positive.  The trial is to determine if chemo or tamoxifen alone is of more benefit.  I was randomized to the chemo arm.  6 treatments left and then I will start tamoxifen.  

Giazuc

Thank you for the replies ladies. It feels good to know there are others similar to my diagnosis out there. Talk to you guys soon.

mkd301

hi - i was diagnosed in january 2013 with stage 2b; had 2 positive lymph nodes (surgeon grabbed a few dozen) and a left modified radical mastectomy.  my onco score was 15, which is still in the low range.  i was 45 at the time and because i was "young and strong", my oncologist strongly recommended chemo, which i reluctantly agreed to.  i got 4 blasts of taxotere and cytoxin; and then followed it with radiation (and i'm fine so far).  my friend who had a similar diagnosis 7 years prior, but no lymph node involvement, had a onco score of 4 still had to undergo stronger chemo than i.  Good luck with your decisions!!

Anonymous

I had isolated tumor cells and stage 2 with oncotype 11. No chemo.

Giazuc

Thanks Melissa

Giazuc

Thanks Mkd301

rosecal954

My onco score was 21 (low end of intermediate range), had isolated cancer cells in one sentinel node, but was considered node negative.  My oncologist did not recommend chemo for me since it would really not help me much -- 2% - 3%.  My stage is 1b.  I was expecting a lower onco score since the tumor was 1 cm. and not aggressive. I had radiation and had some odd side-effects, but doing better now and opted out of Tamoxifen.

smkbow

Hello. I have grade 3, stage IIA with 3mm tumor in one lymph node. Waiting for results of oncotype testing. I am worried that there is not enough data to support not having chemo if oncotype is low. Has anyone found any good research supporting this?

edwards750

smkbow - my guess is your dr might tend to recommend chemo even with a low score because you have Grade 3 tumors. It's the most aggressive grade. However, drs don't always agree and the choice ultimately is yours. They do consider age as well. The younger the more likely to treat the cancer aggressively. 

Diane 

Akitagirl

smkbow, I can just say that if I had your type of tumor and stage, I would choose chemo.  However, as edwards750 stated, we need to look at the whole picture and not just the parts.  For example, my tumor is 1.8 cm (pre-surgery), grade 1 with no suspected lymph nodes.  However, I am also 42 years old and this is my second kind of cancer (melanoma in-situ).  So, at this time, I am leaning towards chemo and really am not too interested in what the tumor oncotype is - except to add to the existing results for future evaluation.  My profession is pharmaceutical research and development and we know that there are many, many other genes/factors/etc that can modify cell behavior.  In my personal opinion, there has not been enough studies with the population numbers needed, performed to prove that a low oncotype score should be the ultimate deciding factor.  I am fairly certain that most oncologists would agree and again...look at the whole picture.

Finally, you need to make an informed decision that is best for YOU.  You know your body better than anyone else and I encourage you to listen to yourself.  :-)  

Please let us know how you are doing.  I wish you the best and pray for peace and joy in the midst of chaos.

hugs from Akitagirl

keepthefaith

There is also another genetic test called Mammaprint if you end up in the intermediate onco score range. It is my understanding that Grade 1 tumors do not usually respond as well to chemo. I agree with akitagirl and edwards; there are a lot of pieces to the puzzle. It is ultimately your decision, regardless. 

I thought that the onco test was designed for node negative BC...? Maybe things are changing. 

I took everything I was "offered" to keep this beast at bay. 
After my one yr mammo, I have to go in for an U/S and DX mammo on opposite breast tomorrow...UGH. 

Wishing you all the best in your treatments and decisions!

Nancy2581

hi I keep reading this over and over again that grade 1 tumors don't respond well to chemo.  If that is the case why would they even give someone chemo?  I am grade 1 and am doing chemo,  but the fact that I keep reading grade 1 tumors don't respond well to chemo bothers the heck out of me.

Nancy2581

thanks robo that's what I thought too, but if they truly knew grade 1 tumors don't respond to chemo it makes no sense to put someone through it.  I asked my onco this and she said we don't know the makeup of my tumor.  I asked about the onco test but I am premenopausal and MO said still in clinical phase.  Just worries me because I keep reading on this site about chemo not helping grade 1 tumors.  I also had LVI.

mmtagirl

Nancy, I am in the clinical trial that your MO mentioned.  1 2mm node positive, grade 1, er/pr+. Oncotype 16.  The clinical trial is RxPonder and you can google it.  I enrolled thinking I would get in the non chemo arm.  Didn't happen and I am 4 weeks PFC.  Starting to feel good again and now making a decision on rads this week which will delay my exchange surgery.  Once I agreed to chemo I didn't look back.  Hated every minute of it, still trying to Reconcile my pre-BC body with my current one but can't really blame it on the chemo.  

We all have to make the choices we can live the rest of our lives with.  No easy decisions for sure.

Nancy2581

thanks mmtagirl.  I am ok with doing the chemo (I am halfway through yippee).  It's just when I keep reading grade 1 tumors don't respond well to chemo then I start to doubt the chemo and wonder if the 6 months spent on it is a waste.  I sure hope not.  

Nancy

ALittleBitBritish

I didn't have chemo, oncotype came back a 9, and one positive node and I am doing fine, touch wood!  

Mine was a slow growing ILC, so chemo wouldn't benefit me.

keepthefaith

BB, my onco was 21 and my MO suggested the mammaprint test. It was my understanding, that it is only offered if you come up with an intermediate onco score, which you have. I didn't want to wait any longer for a test, or add to the confusion, so went with chemo anyway. No regrets here.

keepthefaith

nancy, when it's all said and done, none of us are guaranteed that chemo will work for our specific cancer. We just have to do what we think is best for us. Glad you are making it through chemo okay!

Nancy2581

thanks keepthefaith.  I know there are no guarantees sure wish there were.  I am actually glad I went with the chemo.  It hasn't been the nightmare I thought it would be.  No walk in the park either but I have had more good days than bad and my hubby has been super supportive.

Nancy

Giazuc

Thanks guys for all the advice. I hope I made the right decision not doing chemotherapy. It's scary thinking about this and trying to move on. I have to believe that I did the right thing.

Tomboy

Giazuc, i am sorry that you are worrying about this. Every thing else you are doing is a good thing. i am not a doctor, so i don't know everything, but it does seem like with a low grade such as yours, that chemo was not really called for. Current NCCN guidelines, which is what most oncologists follow, the protocol is usually no chemo for less than four positive nodes. its that fourth node that gets ya. Lymphovascular invasion is  another reason, like nancy2581 had. if an oncologist had a low oncotype score, themselves, i believe they would want to do chemo, because they deal with cancer daily, and see the real truth of all cancer. the other reason most of you aren't getting chemo is that you aren't her 2 positve. that would pretty much guarantee it. even with my late stage agressive cancer, i really really did not want to do chemo. i know the changes it can wrought, i have watched what happened to too many people- but cancer might have been already in my bloodstream.  if it came back, i figured i would do it then, but they really really wanted me to do it, so i had to trust them... i wish all the best for all of you.

Nancy2581

I thought everyone with lymph node involvement had LVI, but maybe not?  How does the cancer travel to the lymph nodes then?  Can somebody enlighten me?  I did google it and Wikipedia ( I know I know) said that if you have lymph node involvement then you have LVI and if your pathology says otherwise LVI is there just not picked up.

Nancy

farmerlucy

Hi Nancy! I just downloaded Dr Susan Love's Breast Book. Around page 320 (may be funky pagination since I am reading it on my IPad ) she addresses the use of the Oncotypedx with one positive node. Might be worth reading. I hope you are having a peaceful weekend. Hershel and Clairabelle say hello!

farmerlucy

Nancy - Also did I tell you about that "Ask the pathologist" site I found? Cellnetix.com 

I asked a question and they answered it within a day or two. You might be able to ask about the LVI question.

Giazuc

Thank you so much for the reply kathec. Very helpful and I'm very thankful for your kind words. 

Nancy2581

hi Jill thanks for the link and info from the book. I will check it out.  Hope you are enjoying your weekend too.  Say hi right back to Hershel and Clairabelle.  They are so adorable.  Magic is 3 day eventing this weekend lol.

Nancy

Shellies

I had 1 lymph node involved and a score of 9, but I did chemo cuz I was pre-menopausal.

My first onc said not to do chemo based on my oncotype score and just stick with tamoxifen.

I got SEVERAL "second opinions", but all of them said to do chemo, so I did. (Chemo wasn't horrible AT ALL!!! I was never sick, but my energy levels did drop.)

I did not do radiation after mastectomy though (...kinda freaking out about that decision now...???)

worried15

Giazuc,

I too was lymph node positive Onoc type score of 9. I did not do chemo as well. This was in Feb 2014. I do take Letrozyle. Some side effects, but better thatn the chemo. Are you have any regrets? dkryan.55@comcast.net Thanks