Should I be concerned about not having an Oncotype test after my lumpectomy?

Mary, in my experience my oncologist did test my oncotype and it was high, I had a second opinion at Dana Farber in Boston and the dr told me that they only test if tumor is over 1 cm. Mine was <1. So since I had the number I felt I had to do chemo. But original plan was no chemo. Hope this helps. 💕

Thanks for the response. Mine was just under 1cm and she seemed confident. I had considered going to Dana Farber for a second opinion since I’m in Western Mass.

the oncologist at Dana Farber did reiterate that “size does matter”, but because I knew the number I had to do something. I had no lymph node involvement. I had a lumpectomy. Also had radiation. I had no problems with it at all. I’d work all day and go for treatment after work. I did’t have fatigue like some experience. I had like a “sunburn” on the breast that was kept at bay with aloe gel. I wish you all the best!

mary, I had invasive ductal carcinoma 9 mm grade 1 by the time I had a lumpectomy, and 2 nodes removed that were clear. chances of returning is 3 out of 100. All I was given was radiation for 20 days. I never really understood why not chemo since it grew rather quick when first discovered. The testing was done because of the fast growth, perhaps in your case it wasnt rapid. I am in CT near to western mass. and I know in ur area there are exceptional dr's. I would talk to the oncolgist and ask they explain why. Remember its your body and u should have control .

Thank you Pauline.

My tumor was 8mm and they did send it off for oncotype testing. My score came back as 8, so no chemo. I did have extensive DCIS in addition to the 8mm invasive cancer. My sentinel node had one micromet. I had 16 fractions of radiation. My understanding is it’s hard to get an oncotype score on tumors smaller than 5mm. My oncologist office is affiliated with Dana Farber and follow their treatment protocols.

I got an Oncotype for my 4mm tumor, though I was told it is not standard of care for tumors under 5mm. My Oncotype DX was a 19. I also had a Mammoprint test done in hopes of getting an “ultra low risk” result which would justify me not taking AIs. My cognitive impairment after being on Exemestaine was not sustainable. The result came back “High Risk 1”, so I have 3 opinions from oncologists and they all want me on AIs or Tamoxifen.

Hi Mary, your concerns are very understandable! You are asking all the questions, and trust your team of doctors. Sharing experiences is helpful, please know you are not alone! I have had zero experience with medications until the BC diagnosis. My tumor was 9 mm and deep near my pectoral wall in the lower outer RB. After the partial mastectomy surgery my team recommended one round of radiation, no chemotherapy. In fact the radiation was 5 days, at higher dosages, with the 6 th radiation treatment a booster at the tumor site. Radiologist explain d that even with clear margins, the area was close to pectoral wall and margins were narrow. It’s been a year post op, still having issues with my pecs, but acupuncture & physical therapies have been beneficial. Please prepare with creams & lotions for radiation. My skin is very fair & sensitive. Radiation turned my skin bright bubble gum pink and aloe Vera with lidocaine helped relieve the pain. I was an unusual case. But the Aquaphor healing ointment really saved me. It also comes in a spray which truly helped! I did experience some fatigue, but gave into a nap when I needed it. That helped! Be kind and gracious with yourself! The effects do pass quite quickly. After radiation treatments I waited two weeks before starting the Arimidex treatment. I struggled with that pill for a year now & my oncologist just gave me a 3 week break but I have to try the Exemestane beginning next month. From hers crossed it’s more tolerable! Best advice I can give is stay positive, be kind to yourself, arm yourself with the tools you need to fight back. Remember you are not alone! Sending you virtual hugs! Best of luck to you on your journey ❣️

 I had stage one ER PR plus HER2 minus and my oncotypr score was 18. My lymph nodes were clear. I had 16 radiation sessions and I am now on letrozole I have absolutely no side effects except for hot flashes from time to time I started six weeks ago and will continue for five years.

My oncologist told me the Oncotype test shows whether you will need chemo or not. A number above 25 yes- chemo. Anything under 25 no chemo. I was a 5 and will get radiation. Cancer is a very complex beast. I recommend reading everything you can get your hands on - American Cancer Society website is good, and ask lots of questions!

You didnt mention if you are on an AI? You should probably be on one.

Thank you for pointing that out. I forgot to mention that I started Anastrozole and so far no side effects.

It’s crazy how different all these protocols seem to be. I’m at U of Penn and for IDC they always do an Oncotype (for Early Stage) bc if they don’t they won’t know the exact aggressiveness of the tumor (they look for 21 mutated genes) and then can predict if chemo will benefit. Not sure what the NCCN guidelines are wrt Oncotype though.

I had Stage 1a IDC with a 8mm tumor size, ER/PR positive, HER2- and KI67 of 1%. My oncotype score came back at 29 and my oncologist recommended chemo at that time. The Oncotype was an unexpected result so I insisted on getting the Mammaprint as well which came back with a low risk score. So here I had good clinicals from a tumor perspective, a higher risk oncotype score and a low risk Mammaprint score. My oncologist took my case to the tumor board of 6 physicians and they reversed their decision and said no chemo. I then sought 2 additional opinions from other doctors who all immediately said no chemo. So I ended up doing a lumpectomy, radiation and AI. A couple of years after my lumpectomy, the RSCLIN model came out which takes into consideration your age, size of tumor, and your Oncotype score and provides a result. My result was out of 100 people, 95% of the people on AI would NOT have a recurrence, 5% of the people would have a recurrence while on AI and of that 5%, 3% or 3 people who benefit from chemo. So my oncologist told me to stop worrying if I made the right decision to not do chemo since my Oncotype score was the outlier from my clinical tumor, mamaprint results and now the RSCLIN. For those wondering about the RSCLIN model, your doctor can run this for you in a few seconds.

Wow, Vega! Thank you for your message. My oncologist has never discussed these tests. I will be sure to ask at next appointment. I do have to begin extremestane medication next week. Hoping it it more tolerable. Much appreciate your insight!

In 2007 my tumor was a little less than 2 cm. They removed 3 lymph nodes that were all clear. Because of the tumor size my oncologist recommended 4 chemo treatments, 37 radiation treatments, and 5yr plan on Tamoxifen. The chances of cancer coming back was 3%, but my body could only handle one year of the Tamoxifen, so that percentage went from 3% to 7% of it coming back, which was still very low. But…in June 2023, I broke a rib and a bone in my shoulder (Coracoid Process), so my oncologist ordered a PET scan. Came back Stage 4 Metastatic Breast Cancer to the Bones. How does a Stage 1 IDC w/ no lymph node involvement, and a 7% chance of not coming back turn into a Stage 4 Mets to bones after 17 yrs?? 🤷‍♀️🤷‍♀️🤷‍♀️

Wow Leigh, that is a good question. My dx was similar somewhat to yours and I dont as far as I know have it in my bones. I had radiation, nothing in lymph nodes, and I am on Zometa every 6 mos. I have only had a bone scan which showed osteopenia which I have had for like 30 years. Will have to ask my oncologist if it should be checked. What did they do to come up with that dx?

Sorry Leigh. Breast cancer is such a heterogeneous cancer. I think most statistics are 5 and 10 year risk. But why does this happen decades later with a low risk primary and aggressive initial treatment??

Leigh, I was stage 2b in 2001. I did radiation and chemo, plus 5 years AI. 15 years later I have stage 4 bone mets, too many to count. I've been on 2 CDK4 6 and 3 AIs for 9+ years. Now it's in my liver 8 spots. In 2016, I had 2 friends that had mBC, they both passed in less than 6 months. I count all my many blessings.

I had two lumpectomies (June ‘25 & Sept ‘25) for IDC stage 1. Lymph nodes taken during second surgery and were clear. Margins were all clear for both surgeries. My oncologist did not recommended oncotype testing. I was kind of surprised they didn’t recommend it after my second surgery. Although after several conversations and researching I’m comfortable. Per my BC team I did not need chemo and only completed radiation. I had 21 radiation treatments and tolerates them well. Aquaphor was my bestie during radiation treatments to keep my skin from drying out and breaking. I joked with my BC team that my chest was like a slip-n-slide each day after radiation b/c I’d apply aquaphor several times a day. But it worked and my skin was not dry, scaly, or chapped and didn’t break per se. It wasn’t until my last week of tx that I really began noticing the “sunburn” on my treated breast. It was pretty mild and not painful. The fatigue set in for me, during the last week of tx and lasted for a few weeks. It wasn’t bad and I was just a bit more tired than normal. Rad tx didn’t negatively impact my work day with the exception that I occasionally needed to go for tx during my work day but since I am self-employed I could work around my appts. Overall, my rad tx went really well. My one month follow-up was also good. I also started Tamoxifen one month after completing rad tx. So far I’m tolerating the meds okay. I’m almost 5 months into med tx. The biggest side effects I’ve had have been hot flashes that seem to be increasing lately and some fatigue but not horrible. I go for my first 6-month follow-up imaging since surgery next week. Not gonna lie…my anxiety is starting to increase as I get closer to the appt day. I’m hoping and praying for clear images! Wishing you all the best as you go through your rad tx!

I am so sorry, Leigh! I can’t even begin to imagine how you felt getting that news. It certainly brings up many questions like how on earth that happens. Wishing you to best as you continue to fight this!

Hi Mary, I have stage 1, IDC 9mm. I had a lumpectomy two weeks ago. Nodes are clear. MammaPrint that was done in the biopsy pre surgery came back as high risk 1. Met with oncologist today and surprised that she is recommending chemo before radiation and endocrine therapy. I really questioned the need for chemo and she then recommended they send the tumor tissue for the Oncotype before we finalize chemo decision. So now we wait for 2 weeks for those results.

My Oncotype came back at 33. 9mm, Stage 1B, ER+, PR-, HER2-. Clear margins and nothing in nodes. I am refusing chemo and doing radiation and hormone therapy.

Vega, My diagnosis is the same including the tumor size! How old are you by chance?

It's completely understandable to have questions about whether all recommended tests were done, especially when treatment decisions feel significant. Oncotype testing is typically considered for certain cases, and oncologists make recommendations based on multiple factors including tumor characteristics, stage, and individual patient factors. Many patients in similar situations have had successful outcomes without this specific test. Consider bringing up your concerns directly with your oncologist - they can explain their reasoning and help put your mind at ease about the treatment plan they've recommended for your specific situation.