Long term "high oncotype test" survivors
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Congrats, Meow13. So happy for you.
ursaminor, Your diagnosis is similar to mine. My Onco score was 48. I did 4 rounds of C/ T. The good news is that chemo is very effective on those with higher Onco scores. I am 2 years out and still feeling fine and have had clear mammograms. That dark period in my life has come and gone and will for you too. If you have questions , please feel free to message me. Keep the faith👍 Pat
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HI- I am 4 years post dx next month--stage 2 --2/2 nodes- hormone positive--lumpectomy -4 rounds tc- radiaiton and now 3.5 years on femara- minimal muscular skeletal sides effects--onco type was 45-am doing just fine--so keep going forward with your life--the onco score doesnt define how you will do or your future--hugs,kaylie
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Hi Everyone,
so good to read such positive stories. I have an oncotype score of 51 with 40%recurrance risk with hormone therapy alone. ive done heavy duty chemo and radiotherapy after lumpectomy and i have been told my risk is reduced to 15%. At times this is very hard to take as i know that 15% is actually the best case scenario. Im walking everyday, getting fresh air and trying to stay positive. Im physically very well . Anymore good news out there.xx
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Hi Emily21, in 2017 I was diagnosed with an IDC that registered an Oncotype of 52. Chose mastectomy, chemo and now 3 yrs into my aromatase inhibitor. Had very same risks as you. Was your tumor also a PR-?
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Hi Murfy, no I'm er and pr pos, her2 neg. And grade 2, the score was totally different from what the pathology suggested. I'm going to see a genetic oncologist to see why I scored so high,? a gene issue. I also had 3 positive nodes. How are you doing on hormone therapy?
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Not a big fan of the way my AI makes me feel, so MO suggested half-dose daily and only a few weeks into that regimen. But everyone's different and many ladies have no prob. I'm also curious why your Onco score is high! Please keep us informed with genetics if you are comfortable doing so. Did your Path report indicate your percentage of ER and PR? Wondering if they were a little low...
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Yes, I will gladly keep you informed. My er was 100%, and my pr was 15% in my pathology report. I think it was less in the onco report, but was substantially pos. The score of 51 was a massive shock. My MO said that the hormone therapy was less effective for high score patients. Did you get any information. My surgeon said I was 100% fine, no problems, ignore the oncotype score, I can make long term plans. I think he's talking through his arse. He doesn't know anything about oncotype
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Uh, are you from TX and did we have the same 2 doctors? Your PR is somewhat lower than one would expect with 100% ER and I suspect that whatever is causing that discrepancy may be responsible for our hi Onco scores. I also suspect that your tumor pathology is luminal B which tends to be more resistant to treatment (did you get a Ki %?). But you have treated this aggressively from the get-go and there's every reason to feel optimistic about being in that 85% group!
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I'm from Ireland, I live in Kildare, my pathology suggested luminal A, grade 2, though no ki67 result.Given the high score, I guess that was wrong. Anyhow I'll hang in there and hope that everything goes OK on the AI. Best wishes from Ireland. Does Murfy suggest an Irish connection?
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My orphaned great grandpa jumped a ship near Cork. Loved my one visit to IE...
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Lol, as did many fine Irish men, the great famine killed many more, he was a very lucky man. 🍀
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Did you know you can kind of figure out why your oncotype score was so high? You can request "single gene scores" from the Oncotype people; they just send them to you for free. The regression equation that was used to combine the single gene scores is in the public domain and you can plug your single gene scores into the equation. What is NOT published is the transformation equation that converts the combined single gene scores into and Oncotype DX score (that's that's their proprietary secret). But by scaling up and down the single gene scores, you can see where the bulk of the risk comes from.
Personally, I can determine that the greatest share of risk for my Oncotype of 49 was from lack of ER/PR. But the other categories are "proliferation" "invasion" etc etc.
Send me a private message if you want to learn more about this stuff. I can send you the journal articles, equations, etc.
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I would have to wonder too about your oncologist saying ignore the Oncotype score. It’s a barometer oncologists use to determine whether chemo is helpful and a kind of snapshot to what the odds are of a recurrence. Certainly it’s not foolproof but for the most part it’s pretty accurate.
I had the test done and had ascore of 11. I will be 10 years out next month God willing. 8% chance of recurrence. No guarantees but certainly encouraging. I might consider getting a second opinion.
Diane
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Also why have the test done if you are going to dismiss the results?
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This is the Oncotype formula:
The issue I have with Oncotype scores is that they are based on averages and none of us are average. For those who receive scores based on the 2018 TAILORx study, the average tumor size was 1.75 cm and the average grade was 2. So someone with a substantially smaller or larger tumor, or someone with a grade 1 or grade 3 tumor, is not 'average' and the results will vary.
A more personalized recurrence risk is now available using the RSClin model (which has replaced the previously available RSPC model), which every MO can access on-line. This takes the Oncotype score and applies 3 factors - the patient's age, the grade of the tumor, and the size of the tumor - and recalculates the recurrence risk. The results in some cases, in terms of 9-year metastatic recurrence risk, can be significantly different than the generic results that everyone receives along with their Oncotype score. While the RSClin model is new, there are quite a few people on this site who have had their chemo decision changed because of their new risk from the RSPC model.
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My surgeon has told me to ignore it, my oncologist was a different story. I had all the required treatment for an oncoscore of 51.u think my surgeon wants me to put it behind me now. I was fully compliant. X
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Can you tell me how to request single gene Oncotype scores? I see an email address for Genimic Health at the bottom of my report. Is that how I can request it
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Hello Maqsews,
You can call the Genomic Health number on your report. They will email you a copy of your individual gene scores after you fill out a patient release form. I was able to download the form, fill it out, sign it, then took a picture of it and sent it back to them as an attachment to the email. I got a very quick response from them. Hope that helps you. Have a happy 4th of july.🎉 Pat
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Hi everyone,
My Onco score back in 2019 was a 48, Er+, Pr+, her2-. I was told I had a 37 percent chance of recurrence with AI's alone with no chemo. My MO did the RSClin score and told me the following taking into account my Onco score, age, grade, and tumor size.
Individual recurrence risk at 10 years with No Chemo:
31 percent (95 percent cl: 19-47 percent)
Individual absolute chemo benefit:
24 percent ( 95 percent cl: 7-40 percent)
This new score gives me a few percentage points lower for recurrence, which made me feel a bit better knowing this information. Also, glad I took chemo and rads, knowing how beneficial they were in my case.
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Glad to hear you are doing well, I've just started Anastrozole, score 51, 40% recurance risk.. Shit scared
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Hi Emily,
Yes, this stuff is very scary. But, our scores being so high means that studies show that we benefit greatly from taking the chemotherapy. Looks like you did all you could to get rid of the beast. Being scared is normal, but should ease up some over time. It did for me. Take time to be good to yourself and make time to do the things you enjoy the most. I am doing very well on anastrozole going on 2 years now. Feel free to private message me if you wish.
All the best,. Pat👍
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Anymore out there x
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I would like to apologize to all the ladies that have private messaged me through the years. I do not recall any notifications of these messages nor did I even know that I could get private messages so I have never responded. Today I looked on this thread and realized I had messages and some go back years. Please forgive. I would never have ignored those messages and I believe if I answered all those messages today it would seem really weird to some of the ladies that messaged me many years ago. For future reference, I will turn on my notifications and answer anyone who would like to ask me any upcoming questions. When I started this thread I had no idea it would even live on….. but I am so glad that it did for the sake of all the ladies that have followed who might be seeking hope from others. If I relay nothing else in this thread but that we are surviving this dreaded disease in great numbers, I will be satisfied.
I am still doing well after 16 years and I have not had any symptoms of a recurrence. I would never say never but I live my life looking forward and never back. I still see my Oncologist yearly due to my high score (52). I do hope and pray everyone here is doing great and will continue to do so. I know some are just beginning this journey and it is pretty scary at first. Just know this…..we were once where you are and we are doing very very well. 💗
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1OUgirl,. So good to hear from you. Happy that you are still doing well. Did you do chemo, rads and AI? Let's keep this board active. Love to hear from everyone.
Pat😘
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Yes I had both chemo and rads but In 2017 my onc wanted me to have a gene test because I was so young when I was diagnosed and we found the Chek2 gene mutation
So I was told that I should get a double mastectomy so that I would have a far less chance of recurrence in breasts and I totally agreed.
I had a double mastectomy with breast reconstruction, ie.. Latissimus Dorsi Flap surgery in left breast that had radiation (breast tissue that has been radiated has much less elasticity) and my right breast just needed an implant.
But because of the rads many years before I developed Necrosis on left breast which developed into Capsular contracture on left breast right after surgery so….
I had implant in left breast removed, necrosis cut off and Tissue expander insertion in left breast to expand skin tissue slowly.
After tissue expander did it’s job they removed expander and had placement of implant inserted into left breast
I have been a happy camper ever since. The above is a lot to take in and it sounds so much worse than it was. I had 4 surgeries in one year 2017. But it wasn’t because of the cancer, it was because of my skin tissue on left breast not expanding over implant due to radiation. All is great now, I am truly a blessed woman.
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I am 7 years out from my bc diagnosis with oncotype 39 score. BMX and 4 rounds of chemo. Retired. Started law school. Living life to the fullest. So grateful for each day. Hang in there all of you with new diagnoses and high oncotypes.
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Awesome. I have a friend that went through cancer and also went on to law school. Became a very successful lawyer. Never stop living!
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Nottoday, you go girl, so great you are doing so well.
1OUgirl,. Your 2017 sounds like it was pretty rough for you to me. How brave you were to say it wasn't as bad as it sounded. I went through 3 surgeries of lumpectomy due to unclear margins. My surgeon felt MX was not necessary. Hope she was right! Also did additional rads and chemo, Onco was a high 48!. Anyway, I am also doing well and feeling good too, for which I thank God every day. Pat👍😊
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Dear all,
Are any of you having conversations with your MOs about the possibility of blood tests that pick up cancer-related DNA fragments early and potentially offer the opportunity to avoid metastatic disease through early treatment (say, by resuming hormonal therapy)?
For example, see https://news.harvard.edu/gazette/story/2020/03/per....
This technology has been on the verge of becoming reality for years now, and since you all are associated with medical centers around the world, I was wondering if you are hearing more about it in your respective centers.
Thanks!
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Anymore oncotype scores over 50 with positive nodes?
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