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

i know this is an older thread, but i also scored a 9 on the oncodx test and i may join the rxponder study, just awaiting results of CT scan. I also have a positive node and pre menopausal. Do i break out of the mold and not do the standard of care which is chemo?Good info on here!

Kim

I had an onco score of 13, two positive nodes one with macromets and widespread LVI. 2.1 grade ll tumor of IDC with DCIS in areola and nipple. All strongly ER + and PR +and HER2 -. My MO says no chemo. I am getting a second opinion for my own peace of mind.

For me it's the LVI that worries me.

Molly - I had a positive nodded with extensive LVI and Oncotype of 17. Opinions at both Mass General and Dana Farber. DF Said no chemo.. mass General split 50/50 but still my decision. Have you been following the news about the Tailor x trial ? Results really backing up Oncotype. I can't wait to start to get info from the RXsponder trial. ( 1-3 positive nodes Grey area Oncotype chemo/no chemo)

No regrets on my decision in 2013. On Tamoxifen now and soon to be switching the anastrazole. Also on a trial with palbociclib. Glad to have avoided chemo if it wasn't really going to be on benefit.

Good Luck

My second opinion doctor recommended against chemo due to my low oncotype Dx. He said just a few weeks ago I would have been sent for chemo but they are going by oncotype even with positive nodes and LVI. I am being strongly ER +. I sure hope they are right. He did say if I wanted chemo he would recommend it to my MO. He is also sending me for genetic counseling to follow up on my genetic mutation of Chek2.

Kimmer - your stats are similar to mine. I am 100% ER positive, but I also had 1 positive node and LVI. I did chemo - no regrets.

Nancy

Becky,

I am sort of in the same boat as you, but with IDC and a 4mm macromet. My tumor was grade 2 with a low mitotic index. It also wasn't found on mammogram/ultrasound for ~5 years by my estimates. My oncotype was 15. Both oncologists I saw recommended chemo based on standard treatment, but I was told it only was a 5% benefit over 10 years. This percentage doesn't take the oncotype result into account, and it might turn out after the RxPonder trial that those 5% recurrences are in people with high oncotypes. We just don't know yet. I started on Tamoxifen and the plan is to switch to an AI within a year or two when my bones are stronger. I never wanted to do chemo, so sometimes I wonder if the fear stopped me from doing what was right. The oncotype made me feel better about my decision, but then I read stories of women who had low oncotypes and were actually stage IV, or people who had mets without lymph node involvement. My advice is to NOT read those scary stories. There's no telling what will happen, but we do what we feel is right at the time and pray for the best. That's all we really can do.

I had an Oncotype score of 15 with 1 grade one, another grade 2 tumor. I had 4 pos.
nodes including sentinel. They're micromets. ER and PR+ HER - I have Invasive Lobular cancer which responds poorly to chemo, endocrine therapy is much more effective. I had 3 opinions, 1 for, 2 against chemo. I chose not to, as it doesn't make sense to me to kill my immune system to fight my cancer, especially since it isn't effective. I'm a little worried, as it will have to reoccur for me to get better meds. So I also chose no chemo, but largely because I have ILC.

hi Leslie, did they recommend radiation for you?

Hi all,

I’m new to this, and confused and scared. I’m 45 years old, diagnosed 8/13/18 stage 1 IDC. Had a bilateral mastectomy 9/5/18. Oncotype score 16. Pathology according to breast surgeon was Stage 1A, tumor 1 cm, 2 negative nodes, 1 node isolated cancer cells but so few that it was still considered negative. She said 0.0024 mm. Saw an oncologist yesterday for first time. He said it’s Stage 1B, and there was some evidence of LVI, but not extensive. He said the node with isolated cells was 0.02 mm. (I clearly need to see the path report myself). He did not recommend chemo, but recommended radiation on underararm 5-6 weeks low dose. I made the mistake of looking up LVI online. The literature out there is scary. Why doesn’t the Oncotype report include LVI? I feel like no matter what I do, LVI promises me a recurrence down the road? Meeting another Oncologist for a second opinion Tues 9/25. Thanks

Hi Megan - I'm right there with you, confused and scared. Hoping to be making the right choices. Yikes, the pressure is immense! Wishing you the best of luck as you move forward making your decisions. It seems the most important thing we can have is peace of mind. Years from now, if god forbid it recurs, I want to be able to live with myself knowing I did everything I safely could to beat this back as far as I can. Right now I can't say that, hope we can both find a way to get there! Hugs and healing!

Vora - question for you. What you mentioned about the age and ONCO above -- is there documentation somewhere that I could use to show my MO? I'm just barely 41 and pre-meno. Dx July. Grade 2. IDC. 0/3 nodes. I was told prior to surgery that I would most likely have Chemo, now it seems they've thrown all of that out due to my 17 ONCO. It doesn't seem like they are taking into acct my age and meno statues. IDK. Worried. I asked for a Mammaprint and they are fighting me. It's giving me bad vibes. Not like anything I've experienced with the rest of my team.

So, any info from the study you could arm me with? They did agree to order a KI67 though. But If they won't order the MP I'm going to need a 2nd opinion before I agree to skip chemo altogether. Thanks in advance Vora!

WONDERFUL! Thanks so much for sharing the links and info. I'm not at all familiar with the SOFT and TEXT trials so I will give those a read. You can be sure I'm printing this off and taking it with me to my next appt.

Just to clarify, my MO did say my ONCO showed a 1.6% benefit with a 11% RS...BUT...she stated that the benefit fell within the error margin and also didn't think the SE risks warranted treatment with that low of benefit. I was so confused at the change in direction, since I went into that appt expecting chemo, as every single person on my team had SAID chemo up until this appt. So my head was spinning! I was at first so relieved at no chemo. However, after the adrenaline wore off my brain began thinking and double checking. And the rest is history as they say.

So, if my understanding is correct re: TAILORX -- actual chemo benefit could be or would be higher than this (the 1.6% on my ONCO paperwork) ? Since those stats reflect benefits of the whole age range, not just my younger age category?

Not sure if that made sense. Hope so.

Just wanted to thank everyone for this forum and topic. BECAUSE of this forum, I asked for my oncotype DX score and I might not have known to do so without it!

My oncotype came in at 21 with the risk of recurrence 13% with or without chemo, so now I have a decision to make and I don’t know what I’m going to do... but I’m really glad I got the oncotype!

Thanks for sharing Jo. I don't think my report said anything specifically about distant recurrence, just "recurrence" in general, score. I will have to go back and double check. If it shows something different, I will let you know.

My MO did go ahead and order a Mammoprint and the KI-67 for my peace of mind, though they told me it would likely just confirm the Oncotype. The results did confirm the Oncotype, but that's what I needed in order to leave the no chemo decision in the past. I feel MUCH better that I took that 2 weeks to be sure that the tests were in agreement and that I wasn't one of the cases where they differed.