Low Oncotype, Grade 3, Node-positive - chemo or not?

KF2018, I was grade one, stage 2A, wide clean margins and no node involvement. My onco indicated a 1% benefit with 5 yrs of AIs. It was definitely not worth chemo issues. But, I stopped AIs after two years because of SE. That choice increased distant metastasis to 10% and here I am. Just read a great article in Cure magazine that is researching what causes dormant HR+ cancer cells in the body to wake up. I feel like I may have gotten a few more years without disease if I had continued but the the battle would have continued for me eventually. Grade three would freighten me. I have read it responds better to chemo than grade one though You might ask that question. Keep us posted. Hugs and peace in your decision.

It is a tough decision for You! For me, my obvious lymph node involvement and large tumor size made it easy. I had chemo first, 6 rounds, TAC not as fun as it sounds😉, but manageable. Still had 8 out of 20 nodes positive, post chemo. Here's how I thought about treatments- if God forbid, my cancer ever comes back, it won't be because I didn't do everything possible to destroy it. Whatever my Drs thoaught would benefit me, based on latest research, I was on board! Threw the book at it! And I'm thriving now, doing GREAT. Also, I do feel I benefited from getting all my treatments at a University teaching hospital. They are up on all the latest research, with interested , brilliant young Doctors, backed up by the Big shots of the cancer world.I had everything pretty much done in one place, coordinated with all the different treatments. Best wishes to You!😚💖

KF2018 - I understand the back and forth, I was there too before I got my oncotype score. One day I emailed my oncologist saying I was ready to start chemo and the next day I emailed him saying I changed my mind and preferred not to do chemo.

My oncotype score came back as 21 showing the exact same risk of recurrence whether I did chemo or not! At that point my oncologist said he would NOT recommend chemo due to the extra toxicity it introduces. I agreed, for me it was not worth the risk and would provide no added benefit, and I’m doing radiation now and will start the hormone therapy (tamoxifen) after which I plan to stick to because it’s my ticket out of chemo.

I also had positive nodes (2) but tumor was less than 2 cm, highly ER+ / PR+ / HER2- and I feel at peace with the no chemo decision now. This is the study involving those with positive nodes:

https://www.nature.com/articles/s41523-017-0033-7


What makes it different for you is that your tumor is greater than 2cm and grade 3, which is beyond the stats of the women they tested in this study. You need to do your own risk/benefit analysis. Ask your onc about the short AND long term side effects of chemo, see if you are willing to take them on, and how much benefit chemo would really add to your type of cancer. There is a LOT of risk with chemo and you have to be OK with that. Some people sail through it too but you don’t know what side of the coin you will land on.


For me, I was relieved when the decision was made easy for me with the oncotype score. I’m “younger” (the only place they say 43 is young lol!) and docs seem to be more aggressive when we’re younger as they think we can “tolerate” the treatment but I think the opposite. I’m less willing to end up with long term side effects BECAUSE I’m younger. I actually might be more OK with the risk if I was 20 years older, but at 43 I’m not willing to risk a permanent neuropathy or hair loss (look up taxotere) or damage to my organs, something my father who was an oncologist was concerned about with chemo, and he knows. So I personally felt like a cloud lifted when my oncotype score came in such that even the docs would not recommend chemo now.

I asked my doctor how accurate the oncotype stats are and he had a lot of confidence in it. He said the initial study was based on 80,000 women with similar types of cancer, and the cure rate / recurrence rate is based on thousands of women with the same oncotype as me (21). Mostly though they were older women, there’s less data for women my age, but they measure 21 genes in the tumor to determine your oncotype score so some of it has to be based on how the cancer would react to chemo or hormone therapy. The unknown with you is the grade and tumor size, which are technically outside the parameters of the oncotype test.

Anyways I don’t know if this rambling had helped at all but at least it provides another experience and perspective. If I was in your shoes, I would not do chemo. But that’s because I’ve seen more cases where cancer came back with chemo than not so I wonder if chemo knocking down the immune system has an adverse effect. Your oncotype says hormone therapy could be a tool to fight this vs chemo but there are more unknowns in your case.

Another tool you have is changing up your nutrition and fighting the cancer that way too, additive to any radiation or hormone therapy or chemo (if you decide to do it) that you would do. Foodforbreastcancer.com is a useful tool, and you might want to check out Chris Wark’s story (Chris Beat Cancer, he has colon cancer, did the surgery, it was in his nodes, he said no to chemo, changed up his nutrition and is thriving and healthy 17 or so years later) before you make a final decision.

Best of luck whichever way you decide!

Hi KF2018 - Our cases are a little similar. I'm 40, IDC, grade 2, ER/PR+ (both strong intensity, 100%), HER2-, ki-67 is 20-25%, premenopausal, 2/20 positive lymph nodes and also had LVI present in the tumor and one of the lymph nodes. Also had one node w/ extranodal extension. Like you, I am debating whether or not to do chemo. My MO ran a Mammaprint test on my breast biopsy sample, which came back low risk. It said the probability of not having a distant metastasis within 5 years would be 95.3% with Tamoxifen alone and 96.6% with Tamoxifen and chemo.

Every single MO I have seen (at two NCI hospitals and one non-NCI) has recommended chemo, even w/ my low risk Mammaprint result because my two nodes had macromets that were 20mm and I had LVI present. All doctors have agreed, though, that the Tamoxifen will be most helpful to me, long term. One MO told me that w/ the macromets and LVI, the cancer is likely to come back by 30%, and that the Tamoxifen will decrease that to 15% chance, and doing chemo will bring it down to 10.5%-ish.

Like some of the doctors you saw, some just don't trust the Oncotype and Mammaprint as much because the data isn't there yet.

At the end of the day, this is a very personal decision and you have to do what you feel in your gut is right for you. You have to weigh out the pros and cons of doing the chemo or not doing it, and what will give you the most peace of mind. I have been struggling as to what I should do, too, because I just don't believe that chemo is right for me, but all the doctors think it would be beneficial (or as one doctor said, "an insurance policy"). And of course, I am worried about making the wrong decision and a couple years down the road I end up w/ a distant reoccurrence. But for me, the clock is really ticking on needing to make a decision with my treatment.

Have you asked your MO to run a Mammaprint on the tumor? That might give you more peace of mind, although 14 on Onco is considered low risk.

Since two MOs at two different NCIs remarked that the biopsy sample for the Mammaprint may have been on the "good" part of the tumor, I have asked one of them to run another Mammaprint on the actual tumor from surgery and one of the positive lymph nodes, which Agendia has agreed to do. Results should be back soon! Fingers crossed this finally gives me the peace of mind so I can finally make a decision.

My oncotype DX score ( sample sent to California from Ontario Canada) was 16. My onc said no reason for chemo, I responded badly to tamoxifen, she said oh well you are a low risk any way and discharged me. I cant seem to find information on how accurate the score is. I feel that all these stats and risks etc are all a guessing game. Docs don't like to say "we don't know" so they throw out stats. How accurate are all the studies?? it is all based on human behavior and reporting right??? anyway I just do my best, exercise, eat right, be healthy ( all things I was doing) and try to be positive. I had no chemo and I am comfortable with that decision.

Cpeachymom I love the quote: Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' this is my new favorite .

I just found this forum and wish I found it sooner. I am trying to make the same decision over here! A few differences though, oncoptype of 21, grade 3 (2.7 cm) no node involvement, lymphovascular invasion, I'm 43. Before oncotype, 2 oncologists said that they would recommend chemo if they based recommendation on surgical pathology results alone. One said she was very surprised about my lower score. Both say it is in the grey area and now my personal choice. Female Dr would not give me her personal opinion of what she would do so it would not sway my decision, male Dr said he would want his wife, mom, etc to also have chemo even with my score.