Treatment Necessary with Low Oncotype?

Hello! I had hormone positive, HER2 negative invasive lobular breast cancer in my left breast. Since my onco score was 14 I would not need to do any chemo or radiation. I was so excited and relieved! Well, I had a double mastectomy and the cancer was in one of my lymph nodes. This was not seen on the MRI or any of the many other tests before! So I ended up having 4 rounds of chemo, 36 radiation sessions, and I’m taking Letrozole. I’ve been aggressive in my treatment (double mastectomy even though it was only my left breast) so I gladly did whatever my docs told me to do. The radiation was not bad for me at all. But at the end of the day you have to do what you feel is best for you and your body. I, being aggressive in my treatment plan, would most definitely do the radiation and at least try whatever AI type meds they recommend. (I haven’t had any major side effects from the pill, thank God!) All these decisions can be overwhelming but once you decide it gets better. Again, best of luck to you and I’ll be praying for you!

Similar- I was 60yrs. Stage 0 grade 2… tumor was 7mm, but DCIS was 4cm . My tumor was too small to do an onco score. Lumpectomy on left side, and reconstruction on both. 15 rounds radiation. I was also told that I needed the AI drugs. I had almost every side effect mentioned. If I was able to redo do anything- I wouldn’t have taken these. But at the time of treatment your( mine was) mind is in a different mode. I tried anastozole first- which put me in a chemical menopause- mental and physical nightmare, then Exemestane which was better but insomnia and joint/muscle point… I did and still do, acupuncture, healthy yoga and pranayama. I stopped taking them after about 2 1/2 yrs. I have been off for almost a year. I have arthritis in both hands and my left knee. I still stay very active- I recently went on GLP-1 shot ( lowest dose) it has helped with weight management ( I wasn’t huge, just chubby) which helps with joints and swelling and for me it makes me crave healthier food.
I know some people have no side effects from AI drugs and it depends on chances of cancer coming back. It’s a personal decision but a tough one. Blessings

Mine was grade 2 idc left breast, deep by the chest wall rapidly growing (from 1.2cm to 1.7 in the 6 weeks diagnosis to surgery). Ki67 was 25 and they said surgery, radiation and ai for 5 years. But oncotype was 28. Low but abnormal and was told by 2 doctors chemo would decrease chance of Mets by 17-20%. Double digits so ended up with lumpectomy, chemo, 20 rounds of radiation and am now on ai therapy. With oncotype of 9, you are considered normal the way it was explained to me. Radiation foe low grade tumors seems questionable anymore from some of the reading I’ve done but I went ahead with it as recommended by surgeon, oncologist and radiologist. But you are right about the game of chance. I’ve always said it’s the rock or the hard place situation. If I don’t do it, get return of tumor - then too late and I go through all this again and second time I WILL do chemo or radiation etc. again, many choose to do nothing and are clear for years/decades. It is all chance and you just have to make the decisions you are comfortable with and Dan live with long term.

Though it's a hassle to do so, I'd suggest you get a 2nd opinion. Are you able to be seen at a highly-rated cancer center, rather than a medical center? It can make a big difference. I love your description of your "indolent" tumor! And I totally understand! Mine was also low-key...7 mm, Ki-67 5%, no nodes. Also, I'm 72, so there's that. I did 5 days of radiation, 5 minute sessions. Very easy. I take a half-dose (10 mg) of Tamoxifen. Some Stage 1 women my age choose not to take the blockers. I worried about weight gain but I started dieting & doing Pilates 5 times per week, which has changed my life for the better in so many ways! I feel pretty great! There are many twists & turns on this cancer journey! Arm yourself with as much info as you can & that will help. One step at a time. Best wishes to you!

2022 diagnosed with 1.3 cm stage 1, grade 1 ER/PR + and HER2 negative. I had surgery and had clear margins and no lymph nodes. My surgery was lumpectomy and SLNB and breast reduction (from barely a C to an A cup) I turned down the oncotype test and also turned down hormone therapy and radiation. Turned down the radiation because my tumor was directly over my heart and was not worth the risk. Also the hormone therapy had a very slight marginal effect on overall survival so it was an easy no. At the end of the day it is your body and you should make your choices based on your comfort level and no one else's. I'm not a fan of the one size fits all treatment guidelines, I like to think outside of the box 🙂

Diagnosed at age 60 in 2017 with Stage 3 Invasive Lobular Carcinoma. Cancer was in right breast. 3.2 cm. I chose bilateral mascectomy with reconstruction. Oncotype score 8. I also chose no chemo or radiation. 10 year plan . Letrozole for 6 years, then Tamoxifin 3 years. Will be off it in March 2027. Cancer Free for 9 years. I wouldn't have changed a thing.

I forgot to add I had 13 lympth nodes removed as 5 tested positive

My Oncotype score was 22. I did the lumpectomy, radiation & 5 years of the AI. I was 62 at the time. 5 lymph nodes were removed - all were negative. I'm 8 years out now. On the AI, I had almost every side effect mentioned, but I stuck it out 5 years. They asked me to do another 5 years but I declined. They said it would only lower my reoccurrence rate by <3%. I was stage 1, but grade 3B IDC, I had more than 1 tumor & they were largish. I was at the University of Nebraska Medical Center & I really trusted my tumor board recommendations. Trust your oncologist or find a new one. If you doubt the recommended treatment, find another opinion. I did decline an additional 5 years of AI. Good luck on your decision.

@celestebradham thank you for sharing. It’s interesting the strong reaction many women have to the AI’s, even though they’re already in menopause. That’s confusing to me. I’m sorry you had such a hard time.

@dsaylor thanks for sharing and congratulations!! I think I am more hesitant to take the blockers than do the radiation. Will be meeting with oncology today to discuss recurrence rates and options.