NEW Oncotype Dx Roll Call Thread
Comments
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my Oncotype came back at 20. My MO said that to do or not to do chemo was basically my decision. I’m 58 and decided to go ahead with four cycles of TC chemo to be followed by radiotherapy and AIs. I’ve now had 3 of the 4 cycles and whilst there are some side effects especially directly after the infusions, it’s basically fine for the other 2 weeks of the cycle. Yes I’m more tired, but I’m still working and I travel away to work - it’s very doable.
I’ve got all sorts of other things that make chemo a challenge - only one kidney, a degenerative spine, candidiasis, osteoporosis (maybe), but it’s been OK so far. I decided to do it because I wanted the extra “insurance” especially given I didn’t have a mastectomy and I had two different lesions in the same breast.
Everyone is different, I was scared of the chemo impacts but am glad I’m now doing it as TC is relatively light and the time actually goes quite quickly once you’re on the roller coaster.
Good luck and I hope this helps
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oh and Adelozier, I had a PET scan just before surgery which, for me,was the best thing I could have done. No mets visible and it really really made a difference to my mental well being to know exactly what I was dealing with in the here and now.
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Adelozier.. I don’t think they base everything on the one test. But ask a lot of questions and advocate for yourself. Have you looked into doing ovarian suppression? It’a a a bit more aggressive than tamoxifen alon
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BESSY - I think 8% is too high...I think it is about 1/3 your risk of recurrence...so 1/3 of 14% more like 4-5%. I could be totally wrong, as Optimist52 has an even lower reduction in risk for chemo with her score of 22.
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I would ask your MO for the Mammaprint, if possible. My Oncotype was 19 but the Mammaprint has me as high risk. I wish I would have pushed for the Mammaprint at my first diagnosis...then I would have rec'd chemo (instead of 18 months later).
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Isn't the decision to do chemo or not ALWAYS *your* decision, Kiwi-in-Thailand?
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I'm still waiting on my Oncotype score, but my oncologist predicted it wouldn't be very high because my tumors were both luminal A. Low grade..no necrosis..low Ki67, slow as molasses little buggers.
I'm wondering, though, why does the Oncotype score only factor in 5 years of Tamoxifen? What if I don't wanna TAKE Tamoxifen?
Are the makers of Tamoxifen the ones who run these tests?? Just curious
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swg...if you read about the history of the OncotypeDX score, you will discover how tumor samples were taken from patients decades ago and the genetics of the tumors were used to determine which patients survived long term and those who didn’t. And then they looked at those patients who survived and didn’t based on the only anti-estrogen pill on the market at the time, Tamoxifen. That’s how researchers discovered that those patients who took Tamoxifen reduced their relative risk of recurrence by almost 50% and later discovered based on genetics, who needed more aggressive treatment in the form of chemo and who didn’t. Clinicians and researchers knew for many years they were over treating ER+ patients. But they didn’t know precisely who. The genetic testing was groundbreaking because it gave clinicians an idea of who could more likely forgo aggressive treatment thanks to tests like the Oncotype DX genetic score
Since the landmark Tamoxifen study, we now have other anti-estrogen meds for post menopausal patients that are slightly more effective. Furthermore, we now have more genetic tests that build on those previous discoveries and research that are helping patients make more informed treatment decisions.
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regarding factoring only 5 years of Tamoxifen...when Tamoxifen was first approved, based on the studies, researchers discovered that 5 years was statistically significant, so patients were urged to take it for 5 years. As the years went by, other studies bult on the initially findings and discovered that for many patients, 10 years of Tamoxifen provided even more benefit. But....since the INITIAL study was based on 5 years, and the OncotypeDX score based its research on the 5 year Tamoxifen studies, the OnoctypeDX score is based on the 5 years....
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Hi to All, just checking in after 11 years. I had a 2.2 cm IDC and an 11 Oncotype score. Doing well. Good luck to all. Hope that others will check in also.
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Hi everyone. Thanks for sharing the good news, Aug24007. I'll chime in too. Bilateral mastectomy 2/2013. I had right side IDC 1.5 cm. and LCIS, right side ALND with 1 node positive (out of 14 total), as well as left side DCIS 8.2 mm. BRCA 1 & 2 was negative and I had an Oncotype score of 6. Did Herceptin only (no chemo; no radiation) for 1 year, took Tamoxifen for about 5 months before preventative total hysterectomy 5 years ago, and have been taking Letrozole ever since hysterectomy. Doing well and also and hope to hear the same from many more women!
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As there seems to be a lot of conversation regarding chemo vs no chemo based on Oncotype score, perhaps this thread should be bumped!
My stats are below except that my recurrence with TAM alone was 45% and this was lowered to 20% with chemo... a no-brainer.
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I'd like to thank people who started, supported this topic and this form at all. It helped me a lot with my treatment plan. A 6-months chemotherapy AC-T has been cancelled due to my Oncotype DX score 11 (8% chance of distant Mts within 10 years for me). I've received my Oncotype result within 5 days however I'm based in Europe. I had ER+ 80%, PR + 60% HER2 negative, G2, Ki 15-18%, 14 mm tumor (the biggest size). The tumor was removed in 2 weeks (quadrantectomia with clean margins) after pathohystological confirmation. I'm having CT scans with contrast every 6 months and there are no any signs of cancer so far. I had also regional lymphodissection for some reason however all lymph nodes appeared to be clean. So that I'm having lymphedema stage I in my arm that I'm trying to manage now. My hormonal therapy is not a piece of cake as well. But anyway the side effects would have been much worse with unnecessary 6-months course of chemo that would not decrease a recurrence risk for me.
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6%-oncotype score 19
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My Oncotype score is 29 - and report shows 18% chance of distant recurrence at 9 years. I opted out of chemo.
IDC 2 cm lumpectomy and radiation; node negative; ER + 90%; PR +; HER2 negative; Stage 1A but grade 3; did not get Ki score; currently taking tamoxifen even though I am post-menopause because of osteoporosis
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Hi Yogatyme, DorothyB and all. Thanks very much for sharing your experience. I'm hoping this can help in making difficult decision for newly diagnosed people. I was 44 years old and premenopausal when I was diagnosed. My oncologist decided that Zoladex with Femara is better option for me due to endometrial hyperplasia. However I had opinion of another oncologist that I should take Tamoxifen for 5 years. I tried it for 1 month, but it caused a lot of low abdominal pain, however ultrasound assessment showed the same picture as it was before I started Tamoxifen.
It was very difficult decision for me to skip chemo as I was told once that Oncotype might be not that reliable due to intra-tumor geterogeinity and I found some scientific articles about this. I had different results for Ki in 3 laboratories (28%-15%- 18%), ER (60-90%) and PR (28-60-70%) in the same tumor sample that was removed during surgery and I was not sure if this is due to tumor geterogeinity or laboratory specifics. My initial core biopsy showed that I have ER 100%, Pr 100% and Ki 15%, but pathohystology of the removed tumor was more reliable of course and I had 3 postoperative pathohystological conclusions that varied greatly. I was so determined to proceed with chemo that I had even my intravenous port installed. I had 6 opinions of oncologists and chemo therapeutists. 50% said I need chemo and 50% said I should not go with it at all. I was reading a lot of scientific articles about Oncotype DX at that time to decide. I understood that Onco DX laboratory takes a slice of tumor for analyze, but not just one random piece of tissue. In addition I found one article about analytical validation of Oncotype DX stating that variability in reference-normalised gene expression within and between blocks was generally small, with a total standard deviation of only 2.2 Recurrence Score units (on a 100-unit scale) within a patient. I had Oncotype score 11, so I decided that even if it might be 11+2.2 =13-14, I don't need chemo anyway. My understanding was that I don't need Mammaprint as well due to low clinical risk as it seems to be applicable for high clinical risk only. In addition I was not treated before surgery, so my tumor sample for Oncotype DX was not affected by anything. Based on that, NCCN guidelines and results of Tailor X study I decided to opt out of chemo. This is just my experience that I had to go through, but I decided to share it if this might help anyone else like me as I was in a desperate at that time.
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My first post on these forums. I'm pretty new to all this.
My OncotypeDX recurrance score - which I got yesterday and am still in shock about - is 82. I was all set to start a short round of radiation and be done. I mean, I'm 1A, 11mm, 0/5 nodes and all seemed like I'd actually be okay because we caught the stupid cancer early. Now I'm facing 5 months of chemo, IF there are no complications and delays. I mean, there's really no choice with a recurrance rate like that, right? My chart projection was, well, literally off the charts. I guess I'm kinda whining here, but I figure if there's a forum where others might understand, it would be here.
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Congratulations to all who've posted good news of longevity. That's encouraging!
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RomWriter,
Check out this thread for high oncotype survivors...reading it helped me realized that I was not alone...I was a 46:
https://community.breastcancer.org/forum/85/topics/719253?page=18#post_5448045
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Hi RomWriter, knowing that tumor is G3 and Pr-, I would definitely proceed with chemo. I think it's good that you have Oncotype DX result to support this decision and ensure that chance of recurrence will be much less after chemo. The score will keep you determined to complete chemotherapy despite possible adverse events. There are a lot of topics in this forum that will help you to be better prepared for chemo.
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Hi RomWriter - I just wanted to tell you that I too thought I would just have radiation and be done with it. I had four different drs. tell me that. Turns out because I had one node positive and my tumor turned out to be twice as big as they said it was I ended up having to do chemo. It was quite a shock, but you know at this point (I'm 5 years out) it gives me piece of mind that I did it and have done everything possible to beat this beast. The chemo wasn't as bad as I thought it was going to be. Yes I hated losing my hair, but it's back now and all is good. Hang in there
Nancy
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Romwriter - sending support, it’s ultimately up to you on whether you do chemo or not. Remember we have choices. The oncotype should give you a number on the % risk of recurrence with and without chemo and you can weight your own personal risk/benefit scenario and make a decision you feel good about moving forward with.
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Dx 7/5/19, IDC, Right, 2.2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER 2- (FISH), Ki67=40%
Surgery 8/30/19 Right Mastectomy w/immediate reconstruction DIEP Flap, 2 sentinel lymph nodes removed
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I'm struggling with my decision re: chemo or not. I definitely will be on AI x5-10 yrs. My MO recommends T/C every 3 weeks x4 cycles tentative start date of 10/22/19. My Oncotype is 28; 17% distant recurrence rate at 9 years with AI alone. Group Average Absolute CT benefit >15%. I asked my MO to try the Oncotype RSPC (Recurrence Score Pathology-Clinical) test also. I learned of that test here on this blog-Thank You!!! It factors in my age (59), tumor grade and size. She told me the result was 15%, a bit lower. I see in the Oncotype roll call that the 15% corresponds with more Oncotype #s of 22-24. My MO told me earlier that she doesn't recommend chemo for Oncotype numbers at 24 or below; only for 25 or above.
I'm really struggling with my 28 number and 15-17% risk. My husband and I plan to retire soon and am otherwise in good health. Our favorite activity is camping and hiking. My greatest fear is peripheral neuropathy from the T/C as my MO says 30% get it from this chemo. She says symptoms of this SE should go away in one year, but that 10% have it permanently.
Weighing this in the balance now to decide. Should I risk the TC's many side effects (CIPN (chemo-induced peripheral neuropathy, hair loss, allergic reactions, risk of leukemia later in life, etc.) to lower my risk of recurrence or go with AI alone (with Sis of bone loss, hot flashes, etc.) to reduce my risk??? It seems to me my decrease in recurrence risk is small.
Please share with me your experiences, choices and advice. I'm a nurse and am simply trying to get all the info I can to make my personal decision. My hubby calls me "Voyager"-that's the spacecraft they sent to the ends of the known universe to gather information.:) Thanks in advance for your help!!!
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Hi there. Sorry to meet you here
. Were you HER2+ or HER2-? My oncotype was 6, I had one positive node and BMX. Stage was IIA. I was pre-menopausal so I had a prophylactic hysterectomy. I opted out of chemo and radiation but did Herceptin for 1 year as I was PR+/ER+/HER2+. I was on Tamoxifen for a few months before my hysterectomy and switched to Femara thereafter. I'm six and one-half years post BMX and doing well. For bone loss, I have been on Boniva (for osteoporosis) for about five years, have been doing lots of yoga, some light jogging, and bicycling and the initial bone loss has been reversing. You are the only one who has to LIVE with your decision so YOU need to make the decision that is right for YOU. Hope this is helpful to you.0 -
Hi kaaadams, I would consider Mammaprint test. Maybe you can ask your oncologist if it's applicable in your case.
This test says if you have high or low risk of recurrence, but it's reliable if the patient is at high clinical risk.
On the other hand I see that you have Ki 90%. I would proceed with chemo with such %, but that would be my choice of course.
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Hi kaaadams - remember it’s up to you and what SEs you are willing to risk/tolerate for what % benefit. There are plenty of examples that you can find in the alternative threads re: people who declined chemo and have thrived.
I did not do chemo, and I just had my one year annual mammogram yesterday that came back with normal results! No sign of cancer! My oncotype was 21... with 2 positive nodes, the docs were all talking about chemo until my oncotype score came back at 21 and showing that tamoxifen alone vs tamoxifen plus chemo had the exact same risk of recurrence. So at that point my oncologist said he would not recommend chemo due to “the extra toxicity it would introduce to (my) system for no benefit”.
He did mention some women like to do “everything” they can to fight it and might do chemo anyways. I told him I would do everything to fight it, but for me that meant surgery, radiation, tamoxifen, exercise (studies say 30 min of moderate exercise 5 days a week reduces your risk of recurrence by half!) and nutrition (check out foodforbreastcancer.com that cites all the articles and studies around whether certain foods are beneficial or detrimental to fighting breast cancer.
I did decline a further axillary node dissection because I was not willing to take on a 40% risk of lymphedema for a “maybe” benefit. Plus I found other studies showing women with similar cases to mine had better survival rates with just the sentinel node biopsy vs full axillary node dissection, possibly because they could exercise while those who got lymphedema had a harder time with that.
That said, there are plenty of people who have gotten through chemo really well with minimal SEs. My goal was always about how can I fight this successfully while improving my health and minimizing SEs on the treatment I choose to do. And happy to say this past year I kept my sense of self, got through radiation really well, am on tamoxifen and tolerating it well, am over 20 lbs lighter and currently cancer-free with normal mammogram results a year later! I know the journey is not over but I’m happy to keep fighting while still feeling like ME, and a healthier version of me everyday. That’s important too.
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kaaadams
We all face some difficult choices. I usually just tried to focus on one thing, when faced with decisions like this: How will I feel if I am wrong? Could I accept the consequences or would I feel deep regret?
I teach for a living and neuropathy could effectively end my ability to stand for hours in the classroom, type on a computer etc. However, I knew that my aggressive tumor with a high ki67 and high oncotype score gave me a high chance for recurrence. I decided that I would rather change professions than die early of this disease, because that is what I MOST feared. So, I took what most might consider a stronger chemo than you are considering, and I got neuropathy halfway through. I jumped right on an increasingly popular solution: acupuncture. I did six weeks of therapy and have not had it since. I am back to teaching. I am 2.5 years out from surgery and all is well.
On the other hand, my hair didn't return, and that was very hard for me at first. But, I chose not to cold cap during chemo. I decided that the risk was small that my hair would not come back, but I lost that bet! Was I upset? Yes. Do I want my hair back? Yes. Do I regret my decision not to cold cap? No. I made all of my decisions based on one singular goal: to stay alive for as along as possible. I am alive and well! For some women, losing hair would be too big of a price to pay. For me, it is a big price, but not too big to pay. I have no regrets because I was willing to pay the price of my hair--not my life.
Likewise, I decided to reconstruct. Was that the safest decision? No. I put a foreign object in my body. Why? Because for me, losing all sense of myself with no reconstruction was just too high of a price for me to pay. Some women are happily adjusted with going flat. That just seemed impossible for me. I never once considered going flat. So, regardless of the risks, Frankenboob comments, suggestions that I somehow sold out to outdated views of femininity, I did what was right for me. No regets. I invested in my reconstruction and love the outcome! No regrets, in spite of all the extra surgeries....totally worth it!
So, in the end, this is about what means the most to you...what you can live with or without...or not!
Best to you, as you make your decision.
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Hi again, here is my story as well. My insurance refused to cover Oncotype DX for me, so I decided at first to proceed with chemo as I was relatively young and healthy, my Ki% was 28-15% per different laboratories. I thought that it's expensive test that might show intermediate risk and this would be just waist of money. I've got my 1st AC cycle, lost all my hair at day 14, but the most difficult time for me was at days 2-5 after infusion as I thought I would die with 24h vomiting and chemo brain despite all symptomatic therapy. I realized that 6 months of chemo would kill me probably and I decided that I need to know what for should I struggle so much. I've payed for the test and received score 11. My oncologists said I don't need chemo, but I wanted to do Mammaprint test anyway as a second opinion to be sure. Then I was explained that in my case it's not needed due to low clinical and Oncotype risk. I think if you have intermediate score, you can look at Mammaprint. I didn't like idea that it's up to me to decide about chemo, but I wanted to know that my decision is based on all possible facts. By the way, I was lucky and my hair returned thick and curly, however it was very thing and plain before chemo. It started growing in 3 months after chemo though, so I thought at first that I would be bald for the rest of my life, but my hair looks now even better than it was before.Someone in this forum said that chance of recurrence might be different per statistics, but if it happens to you, then it's 100% for you. Chemo might just save life for some of us - this is what I was thinking about.
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Thanks Lucky44- I asked for my core biopsy and mastectomy pathology report recently and discovered my ki67 was actually 40%. I did ask my MO about MammaPrint and she balked saying she didn't know if insurance would cover it. She also thought it may put me in high risk group. But after asking her to run the RSPC and the result is 15%, I looked at this roll call, and the only 15% results had oncotype numbers at 24 or below. Those numbers indicate no chemo would've been recommended. So it's a hard decision for me.
I appreciate your comments and value them as a part of my considerations. No one like survivors have lived this and know exactly what they're talking about.
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