Long term "high oncotype test" survivors
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Meow, the 6% with high Oncotype scores who did not receive chemo were "non-compliant", since these results come from the TAILORx study and all participants with scores of 26 and higher were assigned to have chemo. So it wasn't a matter of choice; it was the study that determined that everyone with a high score would get chemo.
What this means is that while this new report is very favorable for those who have chemo + endocrine therapy, the comparative information provided about the benefit of chemo versus endocrine therapy alone is actually just an estimate using extrapolated data from a very small sample in the NSABP B20 study.
For those with Oncotype scores of 26-30, the TAILORx distant recurrence-free rates were 94.6% at 5 years and 88.5% at 9 years for patients who had both chemo and endocrine therapy. This is compared to the estimated rates of 89.6% at 5 years and 80.6% at 9 years for those who had endocrine therapy alone, based on the estimate extrapolated from the B20 study. So 5% extra metastatic risk reduction benefit from chemo at 5 years and 8% at 9 year. That seems positive.
But what if the estimates calculated from the B20 study are off by 4% or 5%? As the chart below shows, for patients with Oncotype scores 11-25 who had endocrine therapy only, TAILORx found lower metastatic recurrence rates than B20. Using a 20 score as an example, B20 projected a 10% rate of mets with endocrine therapy alone whereas TAILORx projects only a 5% rate of mets. This is a chart from Genomic Health (the Oncotype people). Compare the top and bottom charts for the 11 to 25 scores, the area highlighted in green. The bottom chart, the TAILORx results, shows approximately half the recurrence rate as the top chart, the B20 results, when comparing the "Hormone Therapy" only line.
If this same difference between the two studies extends to higher scores, which is logical but we can never know since TAILORx didn't include a hormone therapy only arm for the higher scores, it would wipe out most of the estimated (using B20) benefit of chemo for patients with scores of 26 to 30.
Above a 30 score, the estimated difference between chemo + endocrine therapy vs. endocrine therapy alone is much greater, so even if the endocrine therapy only estimate is off by 4%-5%, the benefit from chemo would still be significant.
All this to say that this new analysis of TAILORx is interesting and reassuring for those with scores above 30. However for those with Oncotype scores of 26-30, to my reading, there is still no reliable data on what benefit chemo might provide vs. endocrine therapy alone.
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So, if I am reading this right, by having chemo and doing endocrine therapy, with an onco score of 48, my rate of distant recurrence at 10 years is just under 15% ? My onco report showed a distant recurrence rate of 37% with endocrine therapy alone. I am therefore getting closer to a 22% benefit from having chemo and doing endocrine therapy. I guess this makes sense to me. Thanks for posting this Beesie.
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This brings up my question-how much benefit do AIs provide for someone who had a weakly ER+/PR- tumor? My oncotype score was 49, and was triple negative by oncotype. I did LX, rads, chemo (TC x 4) and have a little over three years of femara under my belt at this point.
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Hi all - Greetings from the UK!!
In the UK Oncotype has only been available for the last couple of years so we don't have a thread like this. I'm so pleased to have found you!
I had an Oncotype score of 31. Unfortunately I had to fight for the test following my mastectomy (left side, multi focal (4 tumours 10mm, 8mm, 2mm, 1mm). Grade 2, ER+ HER2- no lymph node involvement. I was told I was such low risk of recurrence that I didn't need the test. Having to fight for it meant that my chemo didn't start until day 76 after surgery which really scares me. From reading this thread I see that there is a 60 day limit for chemo in the US. In UK its 90 days...but ideally should be started within 60. I've read research that states for ER+ cancer within 90 days is fine ...but still I'm scared and angry that the test wasn't performed straight away considering there were 4 tumours that weren't there 18 months previous!!
Anyhow ….I have a question for all you ladies who had a mastectomy on affected breast. Did you also have your other breast removed as a precautionary measure due to your high oncotype score? Was this recommended to you by your medical team or was it personal choice? I know there is debate in the medical profession about whether a contralateral mastectomy is helpful and in the UK it isn't done usually. But for me I feel its something I want to have done to help me move forward.
My mastectomy was in September 2018. I had a tissue expander put in which is still in situ due to having chemo and then radiotherapy. It should be changed for implant Dec/January time. I'm seeing my surgeon in 2 weeks to discuss a date. He knows I feel that I want a second mastectomy but he thinks this feeling will pass, but I know it won't. I just wanted to know how other ladies felt and their experiences.
I look forward to hearing from you x x
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Britgirl,
On the advice of my medical team, I kept my other breast since there was NO cancer found there and the idea of having one natural breast appealed to me. Do I still get anxiety about cancer in the other breast (or a recurrence from the original cancer)? Yes. I am not sure that my fear would ever really go away, even if I had a bilateral mastectomy!
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Dear Britgirl,
Welcome, and good for you for fighting for the best treatment.
I'm sure we all feel differently about prophylactic mastectomy. I did have bilateral mastectomy mostly because my 2.4 cm tumor was diagnosed 50 days after I received a negative mammogram. I felt like I'd never be able to trust those results again. I am happy with the decision. I absolutely love not having to undergo any mammograms, ultrasounds or screening MRIs. Scrafgirl is right. We all know there is a risk of distant recurrence; it's just our reality. Can't sugarcoat it. However, I'm feeling very good five years out, and I'm busy pursuing many things in my recent retirement. Just started law school.
. I hope and expect things will go well for you, too, whatever decision you make.0 -
Hi Britgirl,
Sorry about your worries that you describe. The Oncotype DX is rather recent in the US, too, as far as a standard of care, and it's proprietary. It's taken awhile for the data to be confirmed as far as deciding chemo, so it's kind of new for us, too, to have that information available. I think it was around May of 2018 that the final numbers came out for Yes/No chemo above certain numbers.
I had a bilateral, and the left mastectomy was prophylactic. Why? To reduce my future breast cancer risk down to nearly zero, not completely zero, but it's quite low now. I wasn't able to face the risk of a third primary; too much wear and tear on my psyche! (see my info below for my history---#2 in 2018 was a new primary). It turns out, LCIS was found in my left (prophylactic, non-cancer) breast. My surgeon said this added to the reasons that the bilateral decision was a good one for me.
There was no pressure either way. My own surgeon, herself, had a prophylactic / bilateral after cancer in one breast, as did another partner in her surgical group, so she particularly appreciated my anxiety about this decision, and confirmed that her reasons were similar---to lower her chances a lot of going through it again.
No breast at all means no erotic sensation, and I'm sad to have none at all. For 15 years after #1 cancer in 2003, I did still have one breast that 'worked' that way. My right breast had no sensation at the nipple after lumpectomy + radiation, as is quite common. And, in fact, the lumpectomy and radiation DID cure, for sure, 100%, the 2003 #1 cancer. Which means that at the time, that decision (lumpectomy, no prophylactic bilateral mastectomy) was a reasonable one for me. I knew, of course, that I had an elevated risk (because I'd had a breast cancer) of having it again, and when #2 came along, of course, I kind of wished I'd had a bilateral in 2003! But, who has a crystal ball? My particular situation, of getting another, 2nd breast cancer after a first one is cured, is kind of unusual, but it does happen.
If I were you, I'd get super familiar with all of the risks and benefits of the decision of having your other breast removed. Surgical risks (lymphedema, complications, healing time, mobility) and benefits (reduction of risk of future cancer) and discomfort decisions (tissue expanders, reconstruction yes or no) and keep collecting data to make this difficult decision. There won't be an easy path, just the one that you feel the most comfortable with and committed to.
If you feel comfortable doing so, put your information settings (biography, DX, TX, etc.) as Public, and they'll appear below your post; it's helpful for me to see others' information, to have a context for conversations, etc.
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Hi
Thank you for your considered replies. Its interesting and really helpful to know what other women have chosen to do and why.
Scrafgal - I know what you mean. The anxiety about recurrence would still be there even if I had a second mastectomy, but for me I think I would feel that bit more reassured.
nottoday - I agree with you about not having to have mammograms with a bilateral mastectomy. I had my first annual surveillance mammogram on my right breast in August. Throughout July I was in a complete panic with the build up to it. Then there was a delay in the results so I had to wait 4 weeks through August for the result. (In the UK you don't get the results straight away on the NHS, theres usually a 2-3 week wait. Not sure if that's similar in the US). I really don't feel I can go through that every year. Like you experienced, mammograms aren't always right...and that's scary too. I can see why bilateral was the best thing for you after that. It sounds like you are enjoying life and that's what we have to do.
Hikinglady - you're so right in saying who has a crystal ball! There's so much uncertainty with this horrible diagnosis. I guess we just have to do what feels right for ourselves. Yes I'm trying to get together as much information as possible to make an informed decision. That's why its so helpful to have found you ladies who've already been there. Incidentally it was only through my own research that I found out about the Oncotype DX test in the first place. It was never mentioned to me by my medical team!! I haven't added any diagnosis information yet but will do tomorrow when I sort out my diagnosis letter - so I get it completely right!
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Britgirl,
By any chance did you have genetic testing done? That would definitively answer the question for you. In the end, you have to do what's right for you. There are pros and cons to both, as others can attest to. I have gone through a lot with doing the lumpectomy. I needed 2 surgeries, then chemo (onco score of 48), then 3rd surgery, then 16 radiation txts. I will need mammograms and MRI's regularly. When I asked my SO about mastectomy, she told me, "No". I wish you the best of luck. So sorry to hear it took so long to start your chemo. But, in my opinion, you did the right thing in receiving it.
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I too had weak ER+ on initial testing and PR- and HER(2) —
The Oncotype risk score was 49 and the ER categorization was “negative”. Technically, the results of the Oncotype RS doesn’t apply to us as their data base was ONLY those who scored ER positive.
Nothing changes the fact that recurrence is a crap shoot- all you can do is treat as best you can and then put it out of your mind and just live. It is way easier said then done. But realistically, that’s all we can do.
Wishing you peace of mind!!
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Bump...I am noticing some individuals who might want to know that this thread exists!
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Bump.....I agree
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Hi All,
Any high oncotype people out there wanting to share an inspiring story??
Thank
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Humblepeace - while I'm a new to having an Oncotype Score of 30 (doing chemo now as a result), I did have triple negative breast cancer over 10 years ago. They don't generally Oncotype known triple negative tumours though some weakly hormonal positives ones get sent for testing and come back with a high score. Mine would've too had it been tested. Anyway, TN cancer was treated with surgery, chemo and radiation and it never came back so I hope this provides some inspiration. What I'm dealing with now is a new primary that is ER+ PR+....a totally different diagnosis.
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Thanks for replying Sugar77. I’m am weakly ER+ and did have an oncotype score of 61. I had not seen much activity on this thread for a bit and was needing to be inspired. I’m so sorry to read that you are dealing with a new primary right now. I pray all the best at defeating the beast and being well. God bless you.
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My oncotype was 59. I'm 2 years past DX and BMX, and I feel absolutely fine. Like Sugar77, I was successfully treated and cured of my first breast cancer, so 2018 was a new primary. Obviously, it's horrible to get breast cancer twice, but I'm so grateful that the first one was cured; my 2018 cancer was completely different location, pathology, etc. I'm very appreciative of more and more effective, evidence-based treatment.
We're living through even more stress now, with a pandemic, and I'm finding that having lived through hard stuff before gives me some tools to manage new, additional stresses. I don't mean that this is a silver lining to the clouds, so much as I'm noticing that I can draw now on some learned wisdom and strength that got developed in me.
Sending everyone strength and warm wishes.
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Beesie- that was a great explanation. I wish I had someone to explain it as well as you did😊
My pathology report was pretty clear that I would need chemo so I wasn't happy waiting 3 wks for the results. I love seeing all these positive posts. It's really hard some days to keep the faith.
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I am bumping this thread because I know I personally really needed it! I found it through a google search. I wasn’t able to locate anything like this via a search on this site.
I just got a score of 31 this week and it has really been hard for me. I was feeling very optimistic before I got that score. I’ve read all the pages here and I am feeling a bit better. I wanted to be sure others who needed it, saw this thread.
I start AC-T on 9/30. Totally terrified....
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StartNew 12212,
I don't post often but your post tonight tugged at my heart and reminded me how I felt when I was in your shoes. Diagnosed with what seemed to be a nonaggressive bc tumor, but then had an Oncotype of 39. I cried when I realized I would have chemotherapy, and just like you, was terrified.
That was 6 years ago. I had four rounds of t/c following, like you, bmx, as well as immediate reconstruction. Chemo was not as bad as I feared. Mostly I remember how kind everyone was - family, friends, neighbors, infusion center team. I joined the Aug 2016 chemo group on this board and that was extremely helpful - everyone going through the same thing together. I was on breastcancer.org almost constantly during those couple of months on chemo (and not infrequently afterward).
Just be kind to yourself during this scary time. Remove as much stress from your life as possible. Treat yourself whenever you can to whatever makes you feel good and hopeful. Allow others to take care of you.
Although we never know what life has in store for us and our health - especially during this time of COVID - I can tell you that these have been six very good years. I'm strong and healthy (as far as I know!), pursuing new dreams, and enjoying life to the fullest. I wish the same for you, and everyone on this thread and this board.
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Ah, thank you for posting nottoday. I didn't fully express what a bad place I've been in this week, so your response means a lot to me. I have been really REALLY been struggling. Despite my large tumor size, with all of the other characteristics, I too was a given a good prognosis. I feel like that all went out the window with this oncotype score. It has been a heartbreaking time for me. I am a single mama to an 8 year old girl. The thought of ever leaving her kills me inside.
I am so happy to read, that after 6 years, you are doing well! I wish you many many more happy and healthy years.
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StartNew12212
I am the lady that started this thread many years ago. When I took the Onco test it was fairly new and I could not find anyone that had a high score, let alone a score as high as mine. My score was 52 so I was desperate to talk to someone that had walked in my shoes first and I wanted them to allay my fears and to tell me that they are still in remission with no sign of recurrence. Therefore, I started this thread with the hope of getting a conversation started between high Oncotype test survivors. Now I can hopefully give some peace and comfort to women that are now having to face the uncertainty that I faced. I am now 15 years down the road from that scary time in my life and am still clear and living a happy healthy life. I very rarely even think about that ugly diagnosis. I live a wonderful full life and I am trusting that you will come back to this thread in the years to come to tell us you are doing great and living a healthy happy life. It is my prayer for all of us.
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Thank you, 1OUgir! Not only for starting this thread, but for returning to encourage others! That must have been a scary time for you to get such a number and on a new test. I am so happy to read that you are doing so well. Thank you for letting me know that. It is good for me to read this.
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My onco score was 34. It’s 8 years now and I am fine no recurrence no new cancers. I still see my Oncologist only once a year now. I had no chemotherapy and no radiation I had a lumpectomy and took Tamoxifen for 5 years, I am blessed.
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hi all- I had a high oncotype=45 at my dx in June 2017--had lumpectomy- 4 rounds of TC-did cold capping and saved my hair!--radiation and have been on letrozole for 3 years this coming Jan with minimal side effects- morning knee stiffness and insomnia-expect will be advised to take well beyond 5 years- recent bone density showed no osteoporosis---having the high score was an indication that I could be greatly helped by chemotherapy and so far so good--moving on with life--best to you,Kaylie
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Hello Kaylie,
Thank you for your post. Sound like you are doing very well. I, too, had a high onco score, 48! Last year went through T/C as well, but ended up needing 3 total surgeries to clear margins and additional radiation. I am doing fine taking anastrozole for the past year. No side effects and no bone issues so far. I have a follow mammogram today. Wish me luck.
Pat
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Im so glad that someone mentioned this thread post to me! I had myself in a panic last night about my oncotype score and reading this has helped ease my mind a bit.
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I have not been on this site since the pandemic got out of control here (months ago)...this is one of my favorite threads.... 1OUgirl...you started something great! I was a 46 oncotype...diagnosed 4 years ago next month...still cancer-free per my tests last week. My oncologist told me, once, that I need to just forget about that 46. It defined my risk BEFORE I was treated...not now!
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This is year 10, score 34 only did AI drugs and mastectomy no sign of the cancer.
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Congratulations, Meow13. So glad to hear you are doing well!
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Just came across this thread, so inspiring and comforting. Thank you IOUgirl for starting it in the first place and also to every single person who contributed. Oncotype 61 here, 1/3 through six cycles of TC with radiation to follow. It's so great to read these stories. I hope to come back here years down the road and post one of my own.
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