worried over onco score
First post here. I was diagnosed 12/27 with IDC, ER+/PR+, Stage 1, lumpectomy on 1/12, and go meet with MO tomorrow. Waiting on Oncotype results at this point. Was originally told rads and tamoxifen, but pathology numbers were all in that "intermediate" area (Nottingham 6, Ki67 20%, size 1.8cm), so I'm fully expecting an Onco score in the intermediate area as well.
If that happens, I'm prepared to opt for chemo. I'm youngish (40) and in good health other than BC. I feel I need to do everything I can do to fight this.
However, there is also a part of me that wants to push for chemo even if Oncotype comes back in the low range. Again, I know I can fight this now and am prepared to do so with everything available to me.
Tumor was originally thought to be 1.2 cm, and was 1.8 at surgery. DCIS also found in surgery, not indicated prior. While nodes were not involved, I didn't have a full Mx, and part of me feels like I need to just fight with every tool available at this point.
I hear so many people saying "We're really going to hope for no chemo", "Hopefully you won't need chemo"... and while I get it, it's not going to be a walk in the park, I'm also not as scared of it as it seems I should be. Believe me... I've read everything I can get my hands on, here on bc.org, elsewhere, talked to numerous friends who have gone through this and are going through this... and I know it will stink. Cancer stinks. Treatment stinks. But I've never been one to not fight with everything I have on anything.
It's almost to the point where I think I'm more scared of getting a score that does not indicate chemo. Rationally, I know that doesn't make sense... I get it, that a low score not only indicates low chance of recurrence, but also indicates that chemo will not improve any odds... but it's like I'm fighting a dragon, and I have a sword, but am being told that it won't help me, and the dragon probably won't attack anyway. But I don't want to drop the sword, you know? (and yes, I know that last part makes me sound like a huge geek, but hubby's been playing Skyrim a lot lately, so.... anyway)
Holy cow, reading over this it sounds like I'm insane. And I may be. Cancer crazies and all that. I guess what I'm wondering is if anyone has opted for chemo even with a low oncotype.
Comments
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I totlally understand u when I knew i had cancer I was about to kick the ass of my docotor now am ok but a bit insane really it sucks i knew i had a lump may be seven month ago but i never went to check it up i was busy with my life but thank God i went n am gettin dignosed m though chemo n i hope evrythin goes well for me n u be strong
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Hello Ruthie G
Looks like you and I and identical BC twins. I too had my surgery on Jan 12th. I am also waiting on my test results too. MY appt with the Oncologist is in 2weeks. I am expecting a low Oncotype score. I don't want to endure any Chemo if I don't have too. I am 47 and healthy other than BC. I am attacking this with diet, exercise and of course most likely Rads and Tamox. I believe I can augment my treatment with a healthier lifestyle. My doctor states that there is no scientific proof that diet caused my cancer, but that being said....he is a vegetarian. Proofs in the pudding, I believe. -
I can relate. Prior to my Oncotype Score coming in, my MO and BS both said that because of my age (43) and the fact that my tumor was over 2cm, they were 90% sure I'd need chemo. I had no nodal involvement and no vascular invasion, and chose to have a BMX.
My score came in at 16...then my MO was "on the fence" about my doing chemo. I really didn't fit into any box....she finally advised that I do TC x 4. She did tell me, "it's your decision. Your score puts you in the low recurrence range. I can't tell you you'd be wrong to turn down chemo, but I can't tell you that you'd be right either". I decided that I'd do it, I've taken the most aggressive approach thus far and don't want to look back with any "what ifs". I've done 2 of 4 so far and while not pleasant, it is doable. I try to think of it as "liquid gold" going into my system and eradicating any possible stray cancer cells.
Also, I did take into account that some women refuse chemo thinking that they're going to chance it by taking Tamoxifin for five years and end up not tolerating the Tamoxifin. -
RUthie-have you considered going back and getting a MX? It would seem this would be beter than chemo in preventing reocurrence. When I first got BC I thought I wanted the outcome to be LX but am more than happy knowing what I do now that I got the MX. We are all different though-I was happy to do a MX but terrified of chemo and was thrilled when I didn't need it.
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Here's the thing. It's not just a question of throwing everything you can at the beast, it's also about protecting you from harm.
Slower-growing cancers have less of a response to chemo, which affects only cells that are actively dividing.
Chemo can kill. Rarely, but it does. I have known, through support groups, 2 women who died from chemo - one who got heart failure from ACT, and one who got leukemia, also from ACT. Both knew the odds going in, and had made the right informed decision.
What the oncotype test will help your oncologist do is to determine whether you have a greater chance of dying from cancer, or from the treatment.
In my case, my chance was greater of dying from treatment.
That said, if I were intermediate, I would make the same decision you are leaning toward, but I wanted to make this perfectly clear. -
Try to stay calm and see what you MO says. It might make sense to get a second opinion as well. I was lead to believe that chemo was my form of treatment. I had the BMX and was waiting on all of my results. Turned out my cancer was not what we thought we were dealing with and I fell into the grey area. Both of my MO opinions recommended not doing chemo and just tamoxifen. Long story short, through this journey I have found that I have a very hard time with any type of medication. The chemo may have killed me and the tamoxifen I was only able to tolerate for 7 months. Good luck with your decision. We all know how hard it is.
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Ruthie,
I know it's hard, but try to stay calm and handle this journey in small steps. Wait for your score, then take all of your medical information together into account and discuss with your doctor. Until you have all the pieces, you really can't go "there". When you have all of your information, you'll make a decision that's right for you.
As an aside, I had chemo. If two oncologists didn't recommend it, I wouldn't have asked for it. Now that hindsight is 20/20, it was really hard and I definitely wouldn't have done it if I didn't have to.
Good luck with your decision...and trust that you will make the right one.
Sherrie
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My tumour was very similar to yours and I opted for chemo because I wanted to be as aggressive as possible. My onc had said that I really was a borderline case because of the amount of %age benefit I would gain balanced against the health risks of chemo. After 5 appalling months (repeated hospital admissions for zero neutrophils etc) the 4th chemo dose nearly killed me through anaphylaxis. And that is when I quit. I don't regret doing the 4 doses I did but I knew when my body had really taken enough punishment.
Californiadisneymam - sorry to disappoint you but I am a very fit lifelong vegan. Still got cancer though. A healthy diet and exercise might make you feel better but unfortunately it doesn't prevent or cure breast cancer.
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Got my score - 19. Really where I was expecting...
MO said that while he could sleep at night if I decided against chemo, if it were his wife or daughter, he would recommend it. I'm doing it and very happy with that decision. I am ready to fight!
I will be doing 4 rounds of TC starting next Thursday, every 3 weeks. Rads immediately afterwards, which puts me ending right before our big family vacation we have planned mid-June.
I feel so much better having a plan! Thank you for your words of encouragement... I was really driving myself nuts and feel much better now.
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RuthieG - My score was 20 and while I could have said no - I too am doing it all with the same TC as you followed by Rads. Goodluck. I have had one treatment so far and not too bad.
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Wanted to toss in my two cents...49 when diagnosed, with oncotype of 20. I was more afraid of chemo than cancer at that point in time....too many movie of the weeks I guess. Well my Onc said the same thing "if you were my wife or daughter, I'd say do it" So I did. 4 x TC, is wasn't a walk in park but it was so doable. Drink a ton water before every treatment, pamper yourself after and don't worry about the hair, it truly makes getting ready to go out a matter of minutes! I am now heading around to 3 1/2 years out and have had the recurring fears of spread, aches and things scare me more than they used to, but knowing I threw EVERYTHING at the beast makes me feel like a real warrior and any peace of mind I can find with BC is important. My Tumor Markers are slightly about normal right now , so I know I would really be kicking myself if I had not taken the chemo. There is a ton of helpful tips here for chemo. Good luck.
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Our Dx's are quite similar, but I had a smaller tumor and I am a little older too. My Onco score was 18, and I chose to skip chemo. Still feel good about my choice.
You sound informed and as long as you feel good about your own choice, then you are making the right one. When you fall in the "intermediate zone" who really knows what is "best" so you just kind of settle for "comfortable with." Good Luck!
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Isn't the whole purpose of getting that score to see whether you would even benefit from chemo? If you have a low score, then it is likely that you would not even have a benefit from chemo and would be going through all of that for no good reason. You might want to get a confirmation of this from your oncologist.
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Hi. Totally understand your dilemma. My score was 12. I did it and have no regrets. I know most people would disagree with my decision but I tried everything but my personality is such that I needed to know I did everything in my power. good luck and peace!
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My score was 14. When my oncologist came in the room, she said - "well, no chemo for you!!!" (I also didn't have rads)
That said, I was very glad that I was post-menopausal, as it turned out I could not tolerate tamoxifen. I am now on AI's and thankful they are available.
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My MO did tell me that regardless of the Oncotype score, they consider a whole slew of factors before they recommend for or against chemo...such as age, pre menopausal or post, other mitigating health concerns, etc etc etc
She did say that in her group (10 MO's) for healthy young women, they generally use the score of 11 as their cutoff point. 11 and under, no chemo.... I was 16, "young" and otherwise healthy.
If I was older, say over 60-65 with or without other health issues, I wouldn't have done it.
But, it is doable. For comparison's sake, it's nothing worse than I've experienced with three full term pregnancies, honestly. -
When I say I was "16" I'm sure you realize that's my Oncotype score, not my age! Lol
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When my final pathology came back (and after lump and re-excission and then a mx finally) I was prepared for chemo. My onco score was low though and my MO said the chance of recurrance would only be reduced by 2% with chemo. He said you cut the benefit in half for the risks of chemo and it wasn't worth it. No chemo for me. I'm 2 years out and NED right now. I'm ER+/PR+/Her2nu-
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Don't assume what your Oncotype is! Everyone I know, including me, had unpredictable results. And, at your age (I was 39 at diagnosis and Oncotype 12), I highly recommend not two, but three opinions on treatment. Your age could sway some hospitals to recommend chemo regardless of oncotype. Did in mine. Oncotype is not well studied in the younger set. The studies also show that chemotherapy in combination with the other treatments is more effective in younger women. You need to understand that women diagnosed younger are often considered to have a different disease than their older, post menopausal sisters.
Do your research vigorously, this is a great place to do it. You'll get tons of great opinions here. Be wary of those who suggest cures with diet, exercise, herbs, etc. They don't even know what causes BC for sure, so there are no cottage cheese cures yet (Budwig, my favorite ; ). You'll also find on Komen's risk factor calculators those things IN our control are really very small risk reducers. Those things OUT of our control are our biggest risk factors. My point being, before you make your decisions, read and think carefully about it and don't hesitate to ask away on these boards.
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Momof3, that is so interesting re: 11 as the cutoff for young women! By their standards, I did the right protocol. Fascinating. I imagine that number has been influenced by the Tailor X study, which uses 11 as the cutoff for study participants to evaluate intermediate risk nuance.
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Edited to add that Tailorx is not about redefining ranges! A score is considered 'low' if it is 17 or below. This is from Genomic Health's site:
TAILORx Trial
Beginning in May of 2006, in a first-of-its-kind individualized treatment trial called TAILORx (Trial Assigning IndividuaLized Options for Treatment (Rx)), the National Cancer Institute (NCI) part of the National Institutes of Health, initiated a landmark trial which used Oncotype DX to identify and assign treatment to more than 10,000 breast cancer patients from 1,500 sites in the United States, Canada, Ireland, Peru and Australia. Coordinated by the Eastern Cooperative Oncology Group (ECOG), TAILORx was designed to evaluate the effect of chemotherapy in women with a midrange risk of their cancer returning, as determined by the Oncotype DX Breast Cancer Assay. The trial evaluates the effect of chemotherapy only for those with a midrange Recurrence Score® result, as previous Oncotype DX studies have already confirmed the benefit of adjuvant chemotherapy for those in the high Recurrence Score range and minimal, if any, benefit for those in the low Recurrence Score range. TAILORx is one of the largest adjuvant treatment trials conducted in the breast cancer field and has enrolled over 10,000 patients. The TAILORx trial is ongoing, but not recruiting patients and results are anticipated in 2015. For further information regarding TAILORx and closure of the trial, please visit the ECOG website.
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PLJ, I am not suggesting Tailor X is redefining ranges, I was very clear that 11 is a range used for study purposes. The parameters of the trial are scores of 11 - 25. That said, some oncologists, mine included, now suggest chemo in that range until the study is finalized. I had many other mitigating circumstances, but at least one of my doctors referred specifically to Tailor X ranges.
I was solicited to participate in the study by one of my opinions on treatment. Women in this range are randomized for chemo or not. Bottom line: until the study is finalized, this range is the one being studied for best outcomes, chemo, or not. Hence my oncologist's reconsideration of my 12, and probably the same for Momof3boys.
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LtotheK,
I know that you had other risk factors and am not questioning your decision to accept chemo. You may recall that I wanted to do chemo but based on my profile, had 4 MOs practically forbid it. I think the key is understanding why the range was lowered for Tailorx. You can read more about that here: http://ecog.dfci.harvard.edu/general/gendocs/tailorx_oncodxfact.pdf Scroll down to 'What is different about the RS categories used in Tailorx?'
Bottom line: we all do the best we can with the current information. The best decision is the one that helps you to sleep at night.
Cheers,
PLJ
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Thought this was interesting...
http://www.ecog.org/general/gendocs/tailorx_oncodxfact.pdf
The purpose of the Onco test is to determine your chances of cancer coming back due to stray cancer cells in your body... Your genes, in the final pathology report tell whether it is likely this will happen.
Mine was 19, no nodes involved, but I was older, so it was up to me whether I wanted to go through chemo.
The Cyp2d6 test IS to determine how well your body metabolizes Tamoxifen... But it's still un-determined if that test is reliable. Some Docs don't believe in it....
So we all know, chemo kills any remaining cancer cells... The test isn't to tell if you will "benefit" from chemo.... It is to kill any remaining cancer cells that you might have in your body. So in THAT sense....it IS beneficial.
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I am keenly aware that after Tailor X is complete, it will probably be clearer I didn't need chemo (though it will probably be decades before they understand what the best protocol is for younger patients). But that's not my point. My point is, doctors are advising carefully, and perhaps more conservatively, until the study comes out.
To be clear, and from PLJ's link, the Tailor X range of 11 - 25 is to avoid the chance of undertreatment in the study group. The statement makes is clear between 11 - 18 there is an elevated risk of recurrence, and this area needs to be studied further, hence the study.
I try really hard not to make this all about me when I post. Probably better at it sometimes than others!
And PLJ, no worries, I just wanted to make sure you understand I'm not adding to the misinformation about scores!
Also, regarding how chemotherapy works, it's not quite as simple as all stray cells getting swept up, though traditionally, grade 3 cells were considered to be the most aggressive and thus most likely to be in motion at the time chemo is administered. There are a ton of other issues. This is why Block Center is starting to do biorhythmic treatment plans. They have a long way to go in even getting the chemo part of this game right, even when it seems like the right choice.
PLJ hit it: we do the best we can at the time. I don't ever beat myself up over what is behind on the BC road. I did vigorous research and chose accordingly.
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Tailor trial is now closed and the data should be analyzed beginning in 2014-15.
I am pretty surprised that doctors would be recommending chemo for low Oncotype DX scores above 11. I understand that scores below 11 are at VERY low risk of recurrence so hence no chemo because the risks outweigh the benefits. However, my understanding why they lowered the range from 18 to 11,was to VERIFY FURTHER and be EXTREMELY CONSERVATIVE where chemo benefits outweigh the risks and they couldn't do that unless they included women with those 11-18 scores. So, for example, Tailor might show that until you reach a score of 18, whether you had chemo your risk of recurrence was no better had you NOT had chemo and you might be worse off from having it because of the risks. But they are not going to know that conclusively until they complete the study... AND as they look at the data for the people who score from 19 thru 25, they hope to PINPOINT EXACTLY WHERE chemo outweighs the risks. That also justifies why they lowered the high end of itermediate to 25 and randomized those women, but would not include the 26-30 scores... They were trying to be EXTREMELY conservative and not under treat the women on the upper range of intermediate. Keep in mind that the 10 year range of risk of recurrence for ALL women with low Oncotype DX scores is 6%. I think the design of the study has left many doctors and patients alike confused. However. I think the design of the study is excellent and hopefully we will see a CONCRETE point where the benefits outweigh the risks. -
Would be interesting if after the Tailor trial is completed they find out that scores up to 25 would not benefit from chemo. Now that would be something! Lots of sisters would then rest easier at night!
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I agree, Voracious, which is part of the reason I got three opinions. They all, by the way, had radically different approaches to young patients, keep in mind in my case that was much of the story. University of Chicago, a hospital conducting Tailor X and a host of other major research projects, said "We just don't know exactly whether you should get chemo with a score of 12 based on your other risk factors." They are one of the best, I'm inclined to take their word for it.
By Tailor X standards, yes, Voracious, that's the story--anything under 10 was considered a truly low risk of recurrence. Again, the study indicates they didn't want to under treat patients between 11 - 18. It is interesting they don't mention the possibility of overtreatment, and I think this points to the fact that actually, 11 - 18 is more of a grey zone until the study results are released.
There are other factors, for instance, they truly don't understand much of the biology of BC in young women. Why, for instance, they are often diagnosed at a later stage. And this may be why chemo is more beneficial in this group, regardless of Tailor X findings. It will be interesting to see what the age range is as well.
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Mallory.....why on earth would Ruthie want to have a mastectomy? The reason for chemo is for distant, not local, recurrence. Being able to do less invasive surgery is one of the great steps forward in the passt 40 years.
Cutting them off won't help if cancer cells are already in the bones or liver.
Ruthie....glad you are moving forward. For me, chemo.....and lots of it.....was obvious from the get go. That said, I went with a trial where I got 1.5x what I normally would have received.
I don't regret at all having done that.
Two years past the hammering, I am stronger and fitter than at any time in my life. Good luck!
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If you carefully read the wording in the link I provided, you will note it says: "Since only women who meet current standard clinical criteria for chemotherapy would be included in Tailorx, researchers designed the trial to minimize the potential for under-treatment. In other words, minimize the chance that a patient who could potentially benefit from chemotherapy would be randomized not to receive it." So the population being evaluated would have met standard criteria for chemo, based on current guidelines. Someone like myself, who didn't meet the criteria for chemo based on the guidelines, would not have been accepted in Tailorx. Therefore, there was an increased level of risk in the 'intermediate' population of 11-25, based on their individual profile and requirements for participation in the Tailorx study, and yet this group was randomized to either receive chemo or not. I believe this will further stratify treatment options when combined with the complete patient profile. Oncotype Dx is only one tool used in the equation right now. Tailorx may reveal that those meeting current guideline criteria for chemo, with a low Oncotype score, *would* benefit from chemo. Time will tell. In the interim, best wishes to all. Don't doubt yourself...move forward with courage and don't look back. PLJ
P.S. Regarding mastectomy vs. lumpectomy, given my 'youngish' age (41), I went for BMX. I hope to have decades left to live and would be at greater risk for a new primary than a woman diagnosed at an older age. And so we're back to that whole 'profile' thing again...
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