oncotype dx roll call
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based on reading these posts yours came closest to my score of 56. I go to the doc on Friday to discuss results and options. I was told I’ll definitely need chemo because of my reoccurrence score. ER/PR positive and HER2 negative...2.5 cm..surgery on 11/8..just got results back on 12/21. I think I went up to stage II based on size...I am not sure...so much information to try to understand, I’m so confused and scared.
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Age 54 at diagnosis Onco score of 12 , 1.2cm tumor and no positive lymph nodes so no chemo. BMX so no radiation. Started Tamoxifen in July, plan is to switch to an AI once I am fully in menopause and if my bones look strong enough.
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Age 43 at diagnosis. Oncotype came back at 37 (yikes!) so doing chemo right now, then Tamoxifen for 10 years.
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PebblesV
I have similar scores. I’m 43, Oncotype of 21, but grade 3 and lymphovascular invasion. No nodes, 2.7 cm. Chemo would make a small diff, but difference. Doctors say it’s a personal choice now. I’m still trying to decide what to do.
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I was dx a day after my birthday-age 68. Oncotype score is 29 but I declined chemo. If I was younger I would probably consider it. MO said it would only help by 5%. I feel I made the best decision for me at that time, but making a decision was so difficult. ER is 90%, HER2 is equivocal (calling it negative). My tumor size was 1.6 at dx, but then after surgery they said it was 3.7! That was devastating. Lobular is very deceptive!
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Hi Teri1975 - If it helps, more detail in my case with the oncotype of 21 was 1.7cm tumor, 2 nodes involved, chemo was shown to make no difference (13% recurrence risk with tamoxifen alone vs. 13% recurrence risk with tamoxifen plus chemo). I was going back and forth before too, once I made my decision and had my action plan, it felt so much better. I feel very, very good about the decision I've made - ultimately you have to choose what's right for you, feel good about it, and forge ahead!
Some of the things that helped me:
- I learned my Grandfather had a similar breast cancer, beat it with tamoxifen, no chemo. It never came back.
- My score showed no difference with chemo so that helped cinch things... however if a small difference, I probably would have declined chemo.
- I had a lot of encounters that seemed to point me to avoid chemo if I had the option. I learned about taxotere and how it caused permanent baldness in some women who weren't even warned about it (https://drugsafetynews.com/2018/07/03/taxotere-per...). My mother-in-law went through chemo for lung cancer, then about a year when we thought she was in the clear, she got brain cancer. Also I watched her land in the hospital 3 out of the 4 times she did chemo for low oxygen, low WBC count etc. My friend went through chemo for ovarian cancer and she, like my mother-in-law, is no longer with us.
I went to a dance class for cancer patients, partly to see if I could connect with others who went through chemo and were just fine. Knowing it might be in the cards for me, I wanted to be encouraged by the successes and survivors. On the positive side, the instructor did it all - surgery, radiation and chemo - and she was healthy and great and years out! But then she introduced me to someone in her class who said, "You'll have to forgive me if I don't remember your name but chemo ruined my ability to remember." Thinking this was a temporary thing, I asked if she was going through chemo or had recently completed it. She told me no, she finished chemo 12 years ago, and in her case it damaged neural pathways in her brain.
That said, plenty of people get through chemo just fine, including another friend of mine and plenty on this thread. IF I needed chemo, I discovered a great thread here where someone on the boards really sailed through chemo with little to no side effects and posted what she did: https://community.breastcancer.org/forum/69/topics...
- Even with my scores showing the same risk of recurrence with our without chemo, my oncologist did say some women who are younger like to do chemo anyways to "throw everything they've got at this". I told the oncologist I did plan to throw everything I've got at it, but with diet and exercise (see this article: https://blog.dana-farber.org/insight/2018/02/can-e...) complementary to the treatment.
- There's a bit of a disconnect in that you need a strong immune system to fight cancer and chemo will compromise the immune system short term, but it's supposed to do the fighting for you, so... pro and con.
It's a personal decision and you just have to do what's right for you. There are people on all sides, it was just my personal experiences and research that made me relieved to have an oncotype score that validated a plan for me that did not include chemo. It's the opposite of 'do chemo if you're younger' for me... because I'm "younger", I'm less willing to chance the long-term in some cases very permanent and life debilitating side effects of chemo. Frankly I felt like the cloud, that had come in when I got the positive nodes news, lifted when I got the no chemo news.
I had much more aggressive radiation treatment - 30 sessions! - which I was fine with doing, and that one I got through with very little side effects, a blister here and a scratch there, but ultimately fine. I even considered declining tamoxifen (the hormone therapy) but have decided to take it since ultimately it's my ticket out of chemo.
Please keep me posted on what you decide and remember there's no wrong decision - it's about what's right for you personally! Wishing you success either way.
MrsLLaing - I wanted to write a quick note to you as well, I know this feeling of anxiety and being scared. Please be reassured that this is a very beatable type of breast cancer that you (we) have, even with the high oncotype score. There is a lot of support in this community along the way, and if the docs say you need chemo, the thread I posted above has a lot of great tips on how to get through it in a manner that minimizes side effects as much as possible - here it is again: https://community.breastcancer.org/forum/69/topics...
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Dx @ 38. Oncotype score= 20 received today. Intermediate score. Difference in recurrence w/chemo vs. Tamoxifen alone around 5%, so I'm choosing to forego chemo. Quality of life is important to me & I don't want the side effects.
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Hi, I am 58. Had lumpectomy done and 1 non sentinel node came out positive. It was strange because all sentinel nodes taken out were negative. Oncotype dx is not very common in India but got to know about it and went for it. The score has come as 23 and all MOs are suggesting chemo but I am not very willing since the absolute benefit of chemo is only 1% and chances of recurrence without chemo are 19%, and with chemo I guess the 1% implies it would be 18%. It seems to be that since this test is still very new to India, the MOs here are not very encouraging in node positive cases, especially when rs is greater than 17. I am almost certain that I won't be going for chemo, but would be grateful for any advice or discussion.
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age 43. Onocotype 15. Had bilateral mastectomy. No chemo. No rads. Stats below. 😊
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Dear IndianMommy,
Welcome to the BCO community. We are so glad that you reached our for support and information from our members. Here is a link to more information about Oncotypes Scores. Let us know how we can help you to make the best use of these discussion boards. The Mods
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I don't mean to confuse matters but only sharing my experience. I had an Oncotype of 20 and at the time I was encouraged to get chemo based on the info we had to date and also given I was fairly young and grade 3. I did the chemo. When I reached my five year mark I requested the BCI test to explore the benefits of continuing the AIs to a total of 7-10 years. The results of the BCI stated that the first 5 years I had a 23% reoccurrence rate but after 5 years the reoccurrence rate was in line with my oncotype, or 13%. I suspect the Oncotype is more accurate than the BCI but regardless, given those test results I am glad I did the chemo.
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IndianMommy,
That is fascinating, and alarming on a personal level, that they found cancer in a node that was not a sentinel mode. My impression is that there is still so much doctors don't know about how cancer spreads.
I'm not an expert and am not in a comparable situation so I don't want to overstep. I would say that the lymph node and the fact that you are PR- also makes me think it's worth exploring more and maybe getting a second opinion about chemotherapy. Although, you say 'all the MOs', so maybe you've already done that.
My impression is that at least here in the states doctors don't like doing anything that departs from their 'standards of care' - so it's worthwhile to figure out how much of the pushback you are getting is 'just' on principle, and how much relates specifically to your own situation and their personal expertise and experience of cases like yours. It's very different if you're getting the same advice from multiple MOs because they're all consulting the same website for standards of care, than if they're all carefully reading studies and considering personalized factors.
Good luck, and trust yourself!
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dx @ 34 years old, oncotype 13 so no chemo for me.. lumpectomy, rads and tamoxifen
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52 years old. Initial pathology indicated papillary cancer, a generally survivable type that doesn't need chemo.
But once the tumor was removed the papillary cancer had a 2 mm focus of invasive ductal cancer, prompting the surgeon to order an Oncotype.
My score was 34 - very high for papillary. Tumor board was split, but oncologist eventually recommended chemo after contacting Genomic Health to verify the results.
I agreed - I wanted to live many more years yet. But now that my first chemo treatment is days away, I would be lying if I said I wasn't wondering if I made the right call.
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DX at 62, onco score15, stage 2 A, grade one, lumpectomy, 16 radiation treatments, no chemo, FEMARA
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Thank you so much for your advice and responses everyone!
Finally I managed to get in touch with 2 medical oncologists, 1 in US and another one very senior and renowned in India, and they have said they would be happy to give me option to skip chemo given my score of 23 even with 1 non-sentinel node. Oh, so relieved!
Radiation and hormone therapy (AI) to start now.
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Hurrah IndianMommy - great to hear and glad our experiences were helpful to you arriving at that decision and finding supporters!
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indianmom if sentinel nodes were clear how did they find the positive lymph node? Once sentinels are clear i didnt think they removed any lymph?
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My onco was a 30. I had a bilateral mastectomy with reconstructive surgery on october 31. I'll be going through my second round of TC chemo on Wed. (4 total). I chose the bilateral mastectomy due to histories of biopsies and surgeries because of atypical cells. This time I wasn't so lucky. I was diagnosed with invasive ductal carcinoma stage 2 grade 3, clear lymph nodes, ER positive. Lumps never show up on my mammograms. I'm fortunate that I found this myself as I have in the past. Decided to be done with breast issues once and for all. I'm finding that chemo is the hardest part of this journey. I'm using the cold cap but it doesn't seem to be working - thinking about foregoing it at my next chemo round. I have thick hair and it's falling out daily. It's devastating and I feel shallow feeling this way because my chemo is preventative. I'm dreading my next chemo. 😔
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I think this is what might have happened with IndianMommy --- just something to be aware of....even if our nodes are clear at dx, it's never a guartanee and doctors know this. Not many tell us though...
Research Worth Watching: Overview from San Antonio 2018
https://www.drsusanloveresearch.org/blogs/research-worth-watching-overview-san-antonio-2018
"As a surgeon, I was struck by the fact that the role of surgery and the value of mastectomy in breast cancer treatment has significantly diminished. There are several drivers of this shift but the key is the change in our understanding of the disease and its progression. When I started as a breast surgeon, we believed that after a cancer started growing in the breast, it slowly moved from one lymph node to another and then, after invading all the nodes, went into the blood stream, where it traveled to other parts of the body. We thought if we got there soon enough, and did a big enough surgery, we could slam the door before the migration to the nodes and blood stream began.
Now we understand that most, if not all, breast cancers have sent cells out into the blood stream way before we are able to diagnose the disease. Up to 40 percent of breast cancer patients have detectable disseminated tumor cells already in their bone marrow at the time of diagnosis. The fact that we can find these circulating tumor cells (CTCs) in the blood or disseminated tumor cells(DTCs) in the bone marrow at the time a person is first diagnosed with an early-stage breast cancer shows that what we have termed early detection is not really very early."
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Spoonie, that is lousy news. I try so hard to tell myself that my lowish oncoscore (11) is good news. Good news. You'll be okay. You'll die of something else. Probably slipping and falling out of the bathtub. I say these things to myself to convince myself that the constant feeling of unease, the constant, present threat, is unwarranted. It's all in my head. They got it early.....
I know better than to believe this. I don't care what my pathology report says, it was 9 years between mammograms and god knows how long this thing was percolating away in there. It never made a lump, no one found a lump, not me, not any medical person. It did make pain, unrelenting ache for half a year. I have to wonder, if the cancer gets to the point where it is HURTING, can I really think I've 'beaten the odds?' It is very hard to act optimistic and live as if each day is my last when living as if each day is your last becomes a crippling burden after a while.
I do go greater spans when cancer isn't on my mind. But then when I do think about it it's like it gathered steam in that short time of not thinking about it and it just whallops me flat. Like, oh yeah, you had a good day where cancer wasn't on your mind? Well take THAT you puny human!
It is 1:00 in the afternoon on the first day of a new year. Time to start drinking and ignore some shitty realities !
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Hi ladies!
First off I'm sorry we're all here under these circumstances but thank God we have a place to go! I had b/l mx with immediate deip flap reconstruction on Nov 12. I'm on pins and needles waiting on my oncotype score. Monday was 2wks since they sent it off but i hoped with the holidays I would at least get a call in the next 2 days. My ki 67 was 30 percent er 100 percent and pr 100 percent and grade 2. But i don't know my true stage because i had unsuccessful lymph node mapping. I had no dye or tracer absorption. My bs took a section of tissue that felt nodular but no lymph nodes in the tissue. My bs and oncologist agree on no more surgery to find lymph nodes. I don't understand what all of this means without lymph nodes. I've been pretty down over the last week thx to waiting...again. And because its really sinking in that since i had 0 lymph nodes tested and I'm never going to have that information and will always worry. Yes..all my stats are in my favor i guess you could say but I'm a manmo tech and we all know cancer doesn't play by the rules!
How would you all feel without any lymph nodes being tested? I would really appreciate your thoughts. I feel like im close to my breaking point again!
Thanks for your input💖
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Hi ladies!
First off I'm sorry we're all here under these circumstances but thank God we have a place to go! I had b/l mx with immediate deip flap reconstruction on Nov 12. I'm on pins and needles waiting on my oncotype score. Monday was 2wks since they sent it off but i hoped with the holidays I would at least get a call in the next 2 days. My ki 67 was 30 percent er 100 percent and pr 100 percent and grade 2. But i don't know my true stage because i had unsuccessful lymph node mapping. I had no dye or tracer absorption. My bs took a section of tissue that felt nodular but no lymph nodes in the tissue. My bs and oncologist agree on no more surgery to find lymph nodes. I don't understand what all of this means without lymph nodes. I've been pretty down over the last week thx to waiting...again. And because its really sinking in that since i had 0 lymph nodes tested and I'm never going to have that information and will always worry. Yes..all my stats are in my favor i guess you could say but I'm a manmo tech and we all know cancer doesn't play by the rules!
How would you all feel without any lymph nodes being tested? I would really appreciate your thoughts. I feel like im close to my breaking point again!
Thanks for your input💖
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Hey Cjzach10,
It seems to me that research is moving towards lymph nodes being less significant both as a measure of stage and as vector for metastasis. Between that and clinical evaluation of lymph nodes being correct a very solid majority of the time (I want to say like 70%, but I'm not sure), I hope that might ease your mind a little. Also, there is a woman elsewhere on the boards who get all clear for her SNB, but then by happenstance cancer was discovered in at least one (and I think more than one) non-sentinel lymph nodes. And tbh I myself am feeling a bit resentful of the whole procedure.
I suppose you could ask about radiation for the lymph nodes on that side? I believe that's moving towards being standard of care even in case of many positive lymph nodes, or at least as a very solid alternative to lymph node removal.
But if your docs are confident, and it sounds like your tumor was small, and did you get an oncotype? FWIW, the worrying I think is less about stats and info and more about personality. Like you said, cancer doesn't play by rules.
This illness will make you crazy, and I understand why this is making you frustrated and anxious. In your shoes I guess I would be too, and I'm so sorry you have to deal with it.
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Cjzach10, I was more afraid of lymphedema than I was of cancer. At the time, I had been diagnosed DCIS after excisional biopsy. So, I didn’t feel SNB was worth the risk. Of course, after BMX, the pathology came back with a surprise invasive component. So, I consider myself unstaged and there is a disquieting level of uncertainty associated with it, but I do love having my full physical capacity.
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salamandra Thank you! I'm waiting for my oncotype. Monday was 2 wks. My oncologist said she'd call with the result. I see her again on jan 7 for labs and to get started on hormone therapy. Did you get your ki 67 with your pathology? I think i read a post about the lady with non sentinel nodes being positive. That would be extremely frustrating but at least they found those positive nodes and she didn't have a false sense of security. Yes all this is making me crazy!
Pi-Xi i am definitely glad to avoid lymphedema! I'm gonna have to find a way to deal with the uncertainty of it being in my lymph nodes or not.
Thank you both for the input!
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My pathology report didn't come with the ki67. I had the hormones and the Nottingham score, which I think is one way of arriving at grade.
Actually at first, all I got was the bare report that said IDC 1.3cm. They sent the more detailed report to the surgical oncologist and I had to wait about 2.5 weeks to get everything explained to me. It was hell. I was so scared to google, I didn't even know whether 1.3cm was considered small or not.
There is so much damn waiting in this process.
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Hi cjzach10 - I wanted to chime in as well as I had the sentinel node biopsy with 2 nodes removed, both came back with cancer, and then I declined a further axillary node dissection. Yup, I’m either that crazy or that brave or that certain in the right path for me. So I too will never know if anything spread to the axillary nodes or not and I’m OK with that. For several reasons:
1. Like Pi-Xi, I was more concerned with the 40% risk of lymphedema with an axillary node dissection, didn’t seem worth the risk for a “maybe” scenario. Also they did a study showing women who exercise reduce their risk of recurrence by almost half... so, like Pi-Xi, I prefer to keep my physical capability.
2. As Salamandra said, you can treat the lymph nodes with radiation and I did that. The risk of lymphedema is much less with that (10-15%) and the effectiveness coming out in studies to be just as strong. I did a very full radiation treatment and got through it with no major side effects.
3. THIS study showing that those who did just the sentinel node biopsy and had 1-2 positive nodes like me actually fared better than those who did the full axillary node dissection. Probably because of the SEs with the bigger surgery, but this knowledge backed up my decision to not take that greater risk for a ‘what if’.
https://www.ncbi.nlm.nih.gov/m/pubmed/27513155/?i=3&from=/23037494/related
4. No clinical data showed any cancer in the nodes, including CT scans I did after the initial surgery.
5. On the ‘what ifs’, what if there was no cancer and I just had a huge number of nodes removed? Nice to have that assurance but wouldn’t change my treatment plan much and it’s not like the nodes could heal, once they’re gone, they’re gone. Lymphedema is a huge risk and a chronic condition if it happens. Then, what if there was cancer in the nodes? Radiation and the tamoxifen or chemo (whichever path is prescribed) would treat that. In my case, it’s why I was pretty on board with a more aggressive radiation treatment and why I’ll do the hormone therapy (tamoxifen). Don’t need chemo due to my low oncotype score.
Anyways, I’m really fine with not knowing on additional axillary nodes. The data we get is instructional for us to find the best treatment path for ourselves, at the end of the day there’s no right answer or sure thing, you just have to feel good about the path you choose so you can forge ahead with it
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I'm going to loose my mind with all the waiting! I just called the oncologist because it's been more than 2 weeks and there was a mistake made..something about the wrong tissue sample ..now its going to be another 2 wks!
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Is there a way to push a rush on it? They admitted making a mistake perhaps they can atleast do that.
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