Oncotype of 18 - chemo or not?
I am brand new here and really struggling whether or not to have chemo. Diagnosed 9/1/15 with IDC in left breast. 1.2cm. MRI found second lump .6cm. Had lumpectomy and SNB on 9/22 and came back positive margins so had re-excision on 10/1. Developed cording in my armpit so going thru rehab to help me and got infection in breast and started leaking at incision. So, after antibiotics, healing but still struggling with arm. Stage 1, Grade 1, no nodes involved, no history, BRCA negative, ER/PR+, Her2-...all sounds good until Oncotype came back at 18. Now I do not know what to do. I had a bone scan and cat scan yesterday and awaiting those results. Confused and researched out and do not want to make a mistake. I have 17 year old twins in senior year of high school and I do not want to miss any of this with them. Had hoped Radiation and Tamoxifin would be my answer - any advice?
Comments
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Hi Mom - I am no expert on this but I wanted to reach out so as you know you are not alone. There has been a lot of discussion on this recently because of the Tailorx trial, they are trying to find the cut off of where chemo is not effective; they released results for the lower numbers but little is forthcoming with the intermediate numbers, right now although all signs point to hormonal's being effective with intermediate scores too. 18 is at the very end of the intermediate range as I am sure you know - that number sucks! I am so sorry. Things that I would weigh by myself:
What were your ER/PR + percentages? Was your Ki67 relatively high? What does your Oncologist say?
Mine told me no chemo with a score under 20, but no two Dr's seem to have the same opinions so it comes down to what you personally want to do and what your oncologist thinks - what is the net benefit, are you willing to run the risks of chemo for a 1 -2n or 3% gain? I know there is someone on the boards here (there are plenty more than one but this is the only one that comes to my mind right) under the name: Meow13, she declined chemo with an onco score of 34 - I *think* she is coming up on 5 years cancer free, perhaps even more?
It is tough and I think everyone regardless of chemo, stage etc second guesses themselves, but the chance of recurrence are on your side, chances are you won't get one whichever route you take, it is just not guaranteed.....but what in life is?
Hugs and best wishes.
Laura x
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Hi MomofTwins,
Here is the study that Englishmummy is referencing, about the TAILORx trial: Research Confirms Oncotype DX Test Score Between 0 and 10 Means Women Can Skip Chemotherapy
There's also some helpful info on the main Breastcancer.org site's Oncotype DX Test page that may help!
Please keep us posted on what you decide and let us know if we can help any further!
--The Mods
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Thanks Mods, posting from my phone wasn't letting me link that in....I planned to edit when I got home. Glad you beat me to it
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Glad we could help!
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This is a tough one. The thing is, there are no guarantees either way. Putting too much emphasis on the Oncotype score may not be that productive, as the results come back as a percentage of risk, and there are people in that percentage, no matter how small, who recur. No one knows who they will be.
I would have a heart-to-heart with your trusted oncologist and probably go with his or her recommendation unless you feel you feel strongly one way or the other. Unfortunately, our oncs are not gods and can only make recommendations based on their experience and research. You need to do what feels right for you. Figuring that out is a headache, I know.
Are you highly ER+? Tamoxifen is a pretty effective drug. Even women with Stage IV are being given Tamox and the AIs to control their cancer. On the other hand, if you're in the "want to do everything possible" camp, a round of chemo may put your mind at ease. They are much more tolerable these days, and have fewer side effects than the drugs of old. But even that will not guarantee no recurrence.
Good luck.
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My Oncotype was also 18 and my oncologist and second-opinion oncologist recommended no chemotherapy. My pathology showed a multifocal tumour of 1.9 cm and a separate tumour of 1cm. Pathology for the larger tumour showed Ki67 was 30% and I was described as luminal B but this still did not seem to influence the no-chemo recommendation. I was told that the benefit of chemotherapy for me was "less than 4%" and did not outweigh the risks for me (emphasising the for-me bit as I had had some other health issues). The Oncotype report showed the ER score as 10.5 and the PR score as 8.5.
I was also told that the 12% distance recurrence risk figure on tamoxifen (which a score of 18 gives) is lower on an AI - that was the recommendation for me at the age of 61 but might not be for you. A second opinion and some questions about the benefits of ovarian suppression and an AI might be useful?
Just wanted to give you some comparative figures which might be of interest as you ask your own questions of doctors - it's a stressful time and wishing you peace with your decision.
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Thank you - I am awaiting results from a bone scan and cat scan to rule out any other issues. Have already asked for a second opinion even though I really trust my MO...our hospital just became affiliated with Dana Farber so hoping another set of eyes can look at my pathology and confirm what I already see and have discussed. If all scans come back clean, and another MO confirms, think I am leaning towards not doing chemo. Anxious to start radiation and hormone therapy to be sure I am fighting this but have to wait another week for that. seems like time is fleeting so I get nervous.
I am also dealing with cording in my left arm pit...has anyone else had this? So painful and frustrating - have PT but slow going to heal and recover
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MomofTwins.
I have the similar stats as yours. My mass was 8mm and my Onco was 18. Two Drs told me no chemo as it provided only a 1% benefit. I had lumpectomy and radiation. I also developed cording. It's all gone now. Radiation was a breeze, skin healed within two weeks and you'd never know I'd had radiation. Can barely see my two lx scars. On Tamoxifen now.
Christine
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Thank you - that is the direction I am feeling is right but having a second opinion at Dana Farber on Tuesday - Thanks so much for your repsonse. Glad you are feeling well - may it continue!
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MomOfTwins I had an Oncotype of 23, but I would not have had chemo except for the positive node. I was treated at Mt. Auburn, but my doc is also affiliated with Dana Farber. I have 16 yo and 20 yo sons. There are risks with chemo, certain ones can cause leukemia, so if it's not necessary, be glad. I would also say the you won't miss much, even if you need chemo. It was only the week following the treatment that I felt badly. You'd probably only get 4 treatments, 3 weeks apart. It was doable, I worked FT through it all, took total of 7 sick days.
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Grade 1 tumours are the least responsive to chemo. As Englishmummy and others have asked above, what are your ER+/PR+ %s and Ki-67? Tamoxifen will provide a greater benefit to you as a systemic treatment, particularly if you are fairly high ER+. Well differentiated tumours (grade 1) tend to have a low proliferation index as demonstrated by a low Ki-67 value, so there is usually good correlation. Check the breakdown of the three components comprising your grade score (tubule formation, nuclear pleomorphism and mitotic count). A '1' for mitotic count would indicate very low likelihood of response to chemo. With a grade 1 T1c tumour, negative nodes, hormonally positive, unless your docs have compelling rationale for you to do chemo, I don't think the benefit outweighs the risks. Best wishes making your decision.
I didn't have cording myself, but it usually resolves on its own over time. PT exercises and stretching will expedite this. If yours is limited to your armpit area (doesn't extend to your hand, or even elbow), it will usually resolve sooner. Keep working on the stretching. After you experienced the infection and leaking, I know it's just one more frustrating thing you have to deal with, but you'll get there! Hugs
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Thank you for the encouragment - My mitotic count is indeed a "1" - The KI-67 is not listed separately on my reports and when I asked abouth that, I was told it was part of the Oncotype test. My ER is 8.5 positive (told that is moderate), PR is 7.9 (highly positive) and Her2 9.0 negative. Tubular differentiation is a score of 3, nuclear pleomorphism is a 1 so, with all 3, Grade 1
Yes, the cording is difficult as it is also painful and the incision from my SNB is still bothersome. I get upset as, with every day, I feel like I'm losing another day of getting better. Want to resolve all this week so I can start on a course of recovery. Anxious for Dana Farber appt and to start radiation (if that is what we decide) - the sooner that starts, the sooner the tamoxifin and, although I wish I didnt need anyting, it is needed so want to get going. So thankful for all of your support and for having two amazing children who are really troopers. I try to think of the positive..not always easy but trying - thank you
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Hi, My score was also 23. Any lower I would not have done chemo as my % of benefit is 5-6%. My ER from pathology was just 25%. This is a very personal decision. There are some great oncotype discussion threads which really helped me weigh the risks and benefits.
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Thank you to everyone who responded to me...it is a tough time and a difficult decision. I was at Dana Farber yesterday and met with a fabulous MO. She felt very strongly, in no uncertain terms, that chemo was not recommended. She felt that with my tumor sizes and other characteristics, the chemo would not help me and the risks were far too great for almost no improvement in odds. I just loved how she spoke to me, explained things, answered my many many many questions, etc. I do not want to make my decision based on heraing what I "wanted to hear" but, she made sense and was so sure of her answers. So...I am going to skip chemo and pray I am making the right decision. I meet with the RO tomorrow here at home and want to get going in treatment to beat this thing! Dana Farber was quite the place - HUGE but unbelievably efficient - everyone we had contact with was fabulous...how lucky I feel to have had that care. I am also grateful to have this forum to write to others.
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