Anyone have a low Onco type dx with positive lymph nodes???
Comments
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I had 2.2 cm IDC with isolated tumor cells in one lymph node. Had Oncotype of 11. The reason that chemo doesn't work with low scores is chemo kills off fast growing cells. I had no chemo.
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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
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have your case presented to a tumor board or seek other doctors' opinions. Good luck!
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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.
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yes molly I hear you about the lvi
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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
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Lenn13ka, thank you for sharing your experience. It's nice to meet someone similar to my diagnosis. I want what you have... Peace with my decision. I have been following the TailorX study and it is encouraging. Hopefully Rxresponder will fill in the doubts for those with positive nodes.
I will let you know what my second opinion says.
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worried15, no I don't have any regrets and I'm doing good so far except for a few side effects from my medicine tamoxifen
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so if it helps your decision, on thursday my onc said one thing that went "click" in my head - she said there is the potential of having mixed cancer cells (both er- & er+) which i wasnt aware of - that made me want to do chemo to get rid of those er- cells potentially, and will then kill the er+ ones with hormonal therapy later. This is all despite my low onco score of 9. That's just a piece of mind for me
My first chemo session was yesterday, wasnt too bad. Hope i helped a little.
Kim
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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.
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hmmm interesting - i am also strongly er+. I am not taking the chance. The rest of those cancer cells may not respond to hormonal therapy, then what?
Kin
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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
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I had an Oncotype of 13. I had one micromet in one lymphnode. Both my Oncologists and Onc Surgeon said their opinion was that I need not do chemo. That chemo according to Onco type report would do more harm than good, That Tamoxifen was far more effective in fighting the BC. My Chemotherapy Oncologist said that she did not care how low my Oncotype Score was for several reasons. First is that my BC was 6 and a half years old (ILC hides from mammograms) according to the pathology reports. I also had two tiny tumors knitted together; not one. One was grade 3 aggressive cells. She also said that a micromet. (a tiny BC met) to my lymhnode was in her opinion just as dangerous as a Macromet. That whose to say in that 6.5 years cancer was not throughout my blood stream. She felt that if I did not do chemo I was going to die of BC.
I researched and researched and read more medical reports deciding for an MX and begged for a double MX. No chemo! The irony is that this is the very first time I have read abour ER-. That even though I am Er positive I can have ER- cells.
I opted no chemo. Am I at peace with that decision? Yes and no. I feel that I was so emotionally traumatized by the Cancer Dx/ care and the weight of me needing to make the final choice that I did what I could emotionally handle at the time. I live 1000s miles away from any family and tribe. I could not imagine doing chemo alone. I was so so scared to do that. If I were to do it over again I would do chemo just for the added reassurance. I now have to live with the thought of if this comes back and kills me then the Chemo Onc was right and I made the wrong choice. Every once in a while I think about it and I have regrets.
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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.
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LovingisLiving Thanks for responding. Yes and some women do chemo and get cancer again. This disease is really sneaky.
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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. -
I am perimenopausal. I had 1/5 positive sentinel node. Left mastectomy. Onco score=14, chemo not advised by my oncologist. Axillary node dissection done yesterday, if more positive nodes, will have radiation, otherwise no rads, and begin tamoxifin. Any similar experience stories
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hi Leslie, did they recommend radiation for you?
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marieB, I'm curious, did your relative have LVI or extra nodal extension? And do you know how much cancer was found in the lymph node?
Pilgrim64, my surgeon had told me ahead of time that if any nodes came back positive in frozen section during surgery, he would remove "all of them". I think radiation is generally recommended if you have 4+ positive nodes.
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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
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megan...based on the latest TailorX study, at age 45, with a OncotypeDX 16 score you should consider chemo. With respect to your other path results, please keep in mind that treatments have improved. Endocrine therapy is also being recommended for some patients. We know now that longer endocrine therapy works for some of us as well as chemo and for some, ovarian suppression. You are very fortunate that we now have better treatments that are evidence based. Expect to do well! Good luck
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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!
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Spoonie....your team SHOULD be aware of the recent results of the TailorX Study that was published in the New England Journal of Medicine.
https://cancerletter.com/articles/20180608_1/
"A very important finding was that in an exploratory analysis in a randomized group, which we conducted to really nail down and determine that there is no subgroup that derived some benefit from chemotherapy, we found an interaction between age and recurrence score," Sparano said at a press conference at ASCO. "Younger women—50 or younger—who had the recurrence score of 16 to 25 had some chemo benefit..."
Discussing the results for premenopausal patients and chemo...
“And it is entirely possible that this is an impact of chemotherapy on ovarian function. We now know that ovarian suppression does improve outcomes in this setting. And so, it's possible that that's what we're measuring here. It's also possible there are other features of premenopausal disease that we have not taken into account."
You should also discuss the results of the SOFT and TEXT trials. They looked at offering ovarian suppression in lieu of chemo...
http://www.ibcsg.org/News/Pages/TEXTSOFTPressReleaseASCO2018.aspx
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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.
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spoonie.....the TailorX study is saying that patients under 50, ( picked that age because the assumption is that age category is premenopausal) is the group that they believe DO derive a small chemo benefit if their OncotyoeDX scores are between 16-25. That said, they are not sure if the benefit is actually coming from the chemo or PERHAPS the ovarian suppression that will often occur due to the chemo....that’s why.....
It is wise to also look at the SOFT and TEXT trials that focus on endocrine therapy and ovarian suppression....
Really tough decisions to make.....good luck!
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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!
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Spoonie, did the report give the distant metastasis percentage with your treatment path ? I really didn't pay mine any attention, but it was higher than the recurrence rate
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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.
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