Oncotype 24, indecisive on chemo, please help
I am very thankful to find this discussion boards, it gives me a lot of support and knowledge.
I was just diagnosed with breast cancer in May. I had lumpectomy and Sentimental node removed in June, my oncotype came back at 24, in the intermediate range. I read all of the posts on the discussion boards related to chemo vs no chemo with ontotype close to mine, and I'm still having a hard time deciding whether or not to have chemo. I saw 4 oncologists, they said it's up to me, but I'm really having a hard time on what to do. Your advice and your stories are greatly appreciate.
35 years old, no family history, genetic testing negative.
IDC 1.3cm, Stage 1, Lynph node Negative 0/1, Grade 2 (Mitosic 1) ER/PR positive (95% and 93%), HER2 negative
Oncotype Score 24
Ki67 12%
Comments
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so hard to advise you. I think really is up to you. Personally at 53 I chose no chemo and my oncodx was 34.
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Hi Mimi2014-
We want to welcome you to our community here at BCO! We're sorry for the circumstances that have brought you here, but we're glad you've joined us, and hope you find the support and advice you're looking for.
You might want to check out our Chemo forum for some more info, many members share their diagnoses there, and you might find some with similar cancers and oncotypes who can offer their insight.
The Mods
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Mimi, Honestly, you need to know more than just the basics to decide. I'm learning that genetic testing is important when we are in the gray area and You really need to find out your Ki67 level as well. I want a black and white answer so I'm getting the mammoprint to remove the intermediate of the Oncotype, and I'm also getting a Blueprint (same company as mammoprint) to determine if I'm Luminal A or B through genetic testing of the tumor / cut and dry.. no guessing.. If you are following some of the oncotype threads, you'll see that there are a ton of variables in determining if chemo is appropriate.
For example: Ki level? Mitosis level within the grade? How ER+ /PR+ are you? (if you are low PR+ that is more concerning than a higher PR+), Luminal A vs. B, Tamoxifen or AI with OS? What were your margins from surgery? LVI? Do you have chemo limiting diseases/issues?
There's new tests coming out all the time, that are honing in people who benefit from chemo or not. I would suggest looking into your path report and getting more details from your doc. -
I'm sorry you find yourself here. Did any of the MOs give you any factors to consider in making your decision? I had an oncotype close to yours at 23. Chemo was recommended, although I did have a positive node. It was doable but it did put me into menopause... good and bad thing, I guess. I was 40, a bit older than you. Tough decision...
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Back in 09, I had a postive node and an oncotype of 22. It was sort of assumed I would do chemo. I just couldn't get myself there. I had a deep sense that something was wrong, I felt like a gun was pointed to my head. It was December during the big conference. Oncotype came out with a press release that for node positive intermediates, there was no statistical proof of chemo benefit.
That was it for me. It was a hard call. Later on my PS and someone else at my cancer center told me I had made the right decision. About a year ago a fellow asked me how I made that choice because in 09 it was the cutting edge.
Don't get me wrong, I had to learn to live with having a 14% chance of mets. But it just wasn't the right choice for me. I sometimes struggle with a learning disability at work and chemo brain would have maybe been the end of doing my job.
I will say this, the benefit on the node postive choice for chemo kicks in at 20.5. So that tiny slice of triangle wasn't enough for me. At 24 chemo does have a bit more benefit.
Honestly you could flip a coin and that would be ok too. I actually did flip one.
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Lisey,
Thank you for your input.
I added my Ki67 score to the post., it was 12, which is also in the intermediate range. My surgeon just ordered a mammoprint test yesterday, which will take about 10 days for the result. Mitosis level was 1. For my ER/PR, the pathology report says 95% and 93%, margins were all clear. My MOs, 2 recommended no chemo basically, 1 recommended, 1 said if it was his daughter, he would recommended it. The one MO recommended it says it was because of my young age.
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Thank you for your reply.
The main factors are my age, all the result consistently in the intermediate range (grade 2, Ki 12, oncotype 24), mainly the oncotype, MO said would possibly lower my reoccurrence rate by 4%, it's not a big benefit, and I don't know how reliable this 4% really is, and how effective chemo is for my situation.
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it's a coin flip I think. I had an oncotype score of 23, positive node, 48 at time of diagnosis. My doc recommended chemo due to positive node. If it weren't for that, I would not have had it. Personally, I needed to feel like I had done everything possible to beat it.
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My Ki67 was 30-35%, my mitosis =1, Er=95%, pr=5%, same other stats as you... and my Oncotype was 20. I'm getting a mammoprint and blueprint, as well (waiting on results). My decision is no chemo. If the mammoprint comes back back and blueprint says I have luminal B (which with your high PR, you wouldn't have), I'll switch Tamox to an OS + AI, since it's equally effective with Luminal A and B. You can always use chemo a second time if it comes back... I guess I"m saving that weapon for the future. Lumiinals take a while to return typically, so I'm counting on new research at that point that will have better treatment options than poison. I also had melanoma that needs an immune system to keep it in check.. so no poison for me yet. I'm younger - 41.. with 3 little kiddos.
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Lisey.
"3 little kiddos", they are such a blessing. I pray your cancer is cured now, the three little angels need you. I love kids but the hope of getting my own is taken away by this disease now.
I'm also leaning towards no chemo because I don't know how reliable of the 4% reoccurance difference between chemo +Tamox vs. Tamox alone. The oncotype data was based only on about 690 patients in 2004. I'm gonna see one more MO on Monday to get some questions answered and hopefully I'll be able to make a decision soon.
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Mimi, please let us know what you decide. Also, there are a lot paths to becoming a mom. You could still have a little one yet.
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hopefully the mammoprint will help you decide. Do understand that you can't just save chemo for a recurrence because if it recurs with mets, than chemo is simply a way to try and prolong life a little longer whereas now, it is to try and prevent mets to give you a normal Lifespan. At your age, that is a big difference. It is not an easy decision.Make the best decision for you, then have no regrets no matter what happens. For me, I wanted to throw the book at it; that was best for me, but it does not mean it is right for you. Best wishes.
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KBeee.. how is it that you were a Stage 1B but had no nodes 2013? I"m confused. If you had no nodes, then you'd be a 1A with that size tumor.
As for the chemo, some studies have shown that certain subsets of early stage Luminal A are not helped with chemo, so it's harmful because there's no benefit and the SEs are dangerous. See: http://www.aacr.org/Newsroom/Pages/News-Release-Detail.aspx?ItemID=804#.V5UVZ7grLRY
To me, waiting for the subset info on the blueprint will make a big difference in how I proceed. I know Tamoxifen isn't processed well with Luminal B (low PR / high Ki etc) and if blueprint says I'm Luminal B, I'd immediately get the hysterectomy / Ooph and go with an AI. AI's have been shown to be equally effective with Luminal A / B, so that would help a lot I think. I think throwing the book at it, can actually make matters worse for some cancers, and open doors to new ones. I tend to believe immunology is going to be replacing chemo fairly shortly. Genetics is the way to go in making educated decisions, as you get to understand exactly how your tumor functions and what treatments work best for it.
For example, a TN woman posted this list of subtypes for TN... Look at the differences. You could have 6 TNs all in the same stage / size / stats everything, but the cancers need to be treated differently. The same applies to Luminal A and Luminal B. There is no longer a one size fits all when it comes to stage and chemo.
https://www.jci.org/articles/view/45014Cluster analysis identified 6 TNBC subtypes displaying unique GE and ontologies, including 2 basal-like (BL1 and BL2), an immunomodulatory (IM), a mesenchymal (M), a mesenchymal stem–like (MSL), and a luminal androgen receptor (LAR) subtype.
BL1 and BL2 subtypes had higher expression of cell cycle and DNA damage response genes, and representative cell lines preferentially responded to cisplatin.
M and MSL subtypes were enriched in GE for epithelial-mesenchymal transition, and growth factor pathways and cell models responded to NVP-BEZ235 (a PI3K/mTOR inhibitor) and dasatinib (an abl/src inhibitor).
The LAR subtype includes patients with decreased relapse-free survival and was characterized by androgen receptor (AR) signaling. LAR cell lines were uniquely sensitive to bicalutamide (an AR antagonist).
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My Oncotype was 24 with mitosis of 1 and ki67 40%. 24 is smack in the middle of the nobody knows zone. I also have a genetic disorder and although my path reports said 95% & 100% ER + the Oncotype said ER -. With all of those additional factors my doctors advised chemo.
Each decision I've made has been done with an awareness of how I will feel if... In this case, I needed to know I've done all for myself that I can.
I was 53 at the time of Dx and I'm now 55.
It's a miserably difficult decision that becomes easier once it is made.
Be well, Mimi.
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My Oncotype was 23. After surgery, I was Stage 1, Grade 3 ER/PR+, HER2-. Although chemo only lowered my recurrence rate by another +/- 4%, I wanted to feel like I had done all that I could do to prevent a recurrence.
My prayers are that it never comes back, but if it does, I will face that then.
No one can make the decision for you, but I hope that reading other people's stories will make the choice a bit easier.
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mimi, I hope the mammaprint helps you make your decision easier! Too bad this isn't just black and white! Others say "only" 4% benefit...but, that is actually a big part of the 14%. For me that percentage was worth it. I had a 21 score (13%) and did chemo, for my peace of mind. I am otherwise in good health. No regrets here. It wasn't a picnic, but was manageable. If you decide on chemo and can't tolerate it, you can ask your MO to decrease the dose or stop it. There are different types of chemo and some are more tolerable than others. Of course, nobody knows what your SE's may be, if you decide on chemo. That's what makes it so hard. Get all of the information you need to make the right decision for you! Bottom line, you have to follow your gut:).
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Lisey, Different doctors use different staging guidelines; they are not all consistent (which is why one doctor may tell you one thing and another doctor tell you a different stage). My doctor uses the one similar to John Hopkins. http://pathology.jhu.edu/breast/staging.php My tumor was 1.9 cm, so that put me at Pt1c, and they always just said I was stage 1c.
They staged me at pT1c, Pn0, pMX in 2013. In 2015, they did not stage me at all because there was no imaging on my tumor and it was taken out in small chunks. Bottom line is, as you can see, just because it's stage 1, node negative and you throw the book at it, cancer sometimes does what cancer wants and comes back. I have no regrets though and would not change anything about how I treated the cancer the first or second time. It's what I felt was best for me at the time.
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I don't think stage 1c is a thing - because you are only talking about the tumor size, not the other 2 components. I think you were a stage 1A KBeee.
BY the way folks, got the mammoprint back. I'm low risk / Luminal A. Turns out my oncologist was right. No chemo for me, just hormonals. I'm grateful I decided on the additional test because I'm not stewing anymore about it. Apparently, with grade 2 tumors Ki levels are judged all over the place and what is 30% to one pathologist is only 5% to another. My onc told me to disregard my Ki# and look to my mitosis level (which was reconfirmed on the tumor as well)... she says chemo really doesn't help mitosis 1's.
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Hi Kbeee:
John's Hopkins appears to use AJCC staging criteria ("TNM"), like most places in the US. There is no Stage IC in the AJCC system. "T1c" is a size indicator only, corresponding to the size component "T" in the "TNM" staging system. Size-wise, Stage I tumors can be "T0" (quite rare) or "T1" (most common). "T1" is a broad size category that can be further broken down as follows:
T1 Tumor ≤ 20 mm in greatest dimension, including any one of the following:
T1mi Tumor ≤ 1 mm in greatest dimension
T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension
T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension
T1c Tumor > 10 mm but ≤ 20 mm in greatest dimension
Under the AJCC staging system (assuming lymph node involvement has not been detected by imaging studies (excluding lymphoscintigraphy) or not detected by clinical examination), a tumor that is "pT1" in size (including any of T1mi, T1a, T1b, or T1c) and that is pN0 M0 is considered Stage IA. See for example line 2 of the Anatomic Stage/Prognostic Groups chart at page 1, bottom, center of this summary of the comprehensive AJCC staging manual:
https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf
Under AJCC staging criteria, Stage IB requires limited lymph node involvement, specifically pN1mi (See lines 3 and 4 of the chart):
pN1mi Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm))
Pathologic staging is within the area of expertise of pathologists, and other professionals may be less well-versed in the assignment of pathological stage, because they are more focused on the clinical implications of the component parts (size and nodal status).
BarredOwl
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I just went by what my chart (and MO and BS) said; it may have technically been 1A, but I was always treated as a stage 2, because my BS and MO at the time did not think it was accurately measured and felt that it was higher risk than my stats indicated (and that proved to be true). It was 3 years ago and a couple diagnoses ago and I don't care to revisit that, but I removed it from my profile to avoid confusing anyone. This past time, they could not even accurately stage me, other than it was advanced stage because it was a local and regional recurrence (2 tumors), but not stage IV.
Lisey, Good for you for pushing for the Mammoprint so you had solid information. Glad to hear it came back low risk.
Mimi, Talk with your MO about the fact that you still want to have children, because you may be able to harvest eggs prior to chemo if that is what you decide.
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As others have pointed out harvesting eggs before chemo is an option. You can either freeze them as eggs, or have IVF done to freeze as embryos. In most cases you will end up with something to freeze
Unfortunately in my case my eggs were immature when harvested (not sure if a timing issue, or my body issue), which really set me back for deciding on chemo because I so much wanted to have children. I ended up deciding on chemo (without an Oncotype test as it was not covered at the time) out of fear. My periods did come back about 10 months after chemo while on tamoxifen. My original tumour (unfortunately I am now dealing with a recurrence despite the chemo but I did stop the tamoxifen early to try to conceive again) had "lymphatic space invasion" despite being lymph node negative - that was a factor in their recommending chemo to me.
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Hi Kbee:
I understand and agree it is of no moment to you now. I mostly provided that info for the newly diagnosed.
Best,
BarredOwl
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Lisey,
I'm so happy that your Mammoprint came back at low risk. I'm still waiting for mine, but have decided no chemo at this time after talking to another MO. Basically, with current data/research, the benefit of chemo for my status is questionable and the risks may outweigh the benefit.
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Mimi, please keep us posted on what your mammoprint says, I bet it's low risk luminal A. It's still not an easy decision, but I've seen just as many reoccurances after chemo as I have without chemo. Call me a skeptic, but while it may really help TNs and those with high mitosis numbers / grade 3s... I believe it actually hurts those of us with lower grades. I also just read about a new immunotherapy targeted drug for bladder cancer that is saving people who were beyond saving. They are going to open it up to other cancers. Genetic systemic therapies are coming... and my gut says chemo will be a thing of the past soon...
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velo- I am sorry to know yr story. Fortunately a friend of mine froze her eggs in invitro clinic and we do hope she will be undergoing ivf treatment soon in Gdansk
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Lisey,
You seem to know a lot about this Mammaprint test so I have a question for you. If your Oncotype score was a 25 (that's what mine is) and I haven't had the Mammaprint test done, wouldn't the Mammaprint be the same? I mean if the Oncotype test says I'm in the middle wouldn't the Mammaprint say high risk? I asked for the Mammaprint test yesterday and am waiting to see if my MO team will send out a sample for me. I am also ordering a copy of my pathology report so I can see what the numbers and percents are regarding the Ki67, and how much is ER positive and all that. So far all I know is the tumor is 1.4cm, no lymph node involvement, no LV invasion, no family history or genetic mutations. My onco score was 25 and my MO said he's comfortable with me saying no to chemo and just take tamoxifen and then have an ovarian suppression shot every three months. I have requested the Mammaprint be done but am not sure if he is going to do that for me because the results take a month to come back and am not sure he wants to wait on me starting treatment. He did say however that I have until the end of November to start chemo and have it still be effective as if I started it right now. What do you think I should do? I just want to have as much information about my cancer so I can make the best possible treatment decision based on as many facts as possible. Anything you can offer me in the form of advice or knowledge would be appreciated.
Thank you!
Misty
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Misty,
Mammaprint has now been validated by the Mindact trial as having significant ability to determine who should have chemo. See: http://www.agendia.com/new-england-journal-of-medi...
With that, another study shows that many intermediate oncotypes are low risk via mammaprint. http://www.agendia.com/new-data-shows-agendias-mammaprint-can-prevent-under-and-over-treatment-of-breast-cancer-patients-with-an-intermediateindeterminate-oncotypedx-recurrence-score/
Of the 840 intermediate risk patients, MammaPrint reclassified 55% (466) of these patients as High Risk and 45% (374) as Low Risk of the individual's cancer recurring. No correlation between definitive MammaPrint results or the indeterminate 21-gene assay Recurrence Score could be identified, reinforcing the discordance between these assays and inability to use the results interchangeably. MammaPrint was shown to provide additional prognostic information independent from clinicopathological factors to support the treatment decision.
I'm very grateful I got the second opinion as I could have gone the other way as well and needed chemo. Mammaprint made my decision.
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Hi Misty879:
If your Medical Oncologist advises you that the MammaPrint (70-gene) test (Agendia) could provide useful information in your particular case, then because you are also PR-negative, please be sure to ask your MO if the BluePrint test will also be included or requested.
BluePrint is an 80-gene test from the same test provider (Agendia), and assigns a BluePrint ("BP") molecular subtype of: Luminal-type; HER2-type; or Basal-type. If the result is "Luminal-type", then the MammaPrint result (High or Low) is used to for further sub-classification:
(a) MammaPrint Low-Risk / BluePrint "Luminal-type": Luminal-type (A)
(b) MammaPrint High-Risk / BluePrint "Luminal-type": Luminal-type (B)
Similar "intrinsic" or "molecular subtypes" were first described by Perou in 2000, using a different methodology. Over time, alternative methods (e.g., IHC) have been used or newly developed (e.g., BluePrint), which seek to recapitulate those "instrinsic" subtypes. As a result, Luminal-type A status and Luminal-type B status have been determined using different methods in different clinical studies, and these methods may not be fully concordant with each other. With this caveat in mind, Luminal A "like" tends to have a better prognosis than Luminal B "like". For additional information regarding BluePrint, see e.g.:
Physician's Brochure: http://www.agendia.com/media/M-ROW-010-V2_Breast-Cancer-Suite-Physicians-Brochure.pdf
I am a layperson with no medical training, so please be sure to confirm all information above with your medical oncologist to ensure accurate, current, case-specific medical advice.
BarredOwl
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My BS has never ordered a Mammaprint or a blueprint test and is very unfamiliar with them. She says that he Oncotype test is the most reliable and that is the reason they only do that test. She is going to have my MO call me and discuss these tests and I'm going to see if I can get him to send out the samples for he two tests. I just want the most accurate information on my situation to help me decide if I should have chemo. My MO said it's an option due to the score of 25 on the onco test but admits there is no research to say whether or not it will benefit me. The percents I was given were that if I take no treatment at all from this point forward there is a 20-30% chance it will return. Taking tamoxifen lowers that by 50% and there will be a 10-15% chance it will return. Having ovary suppression added to that reduces it a bit more and having chemo lowers the risk of recurrence to about 5-8%. I've read a lot on here that the type of BC I have could return in 10-15-20 years and I know for a lot of women that would put them in their 60s or 70s but I'm in my 30s so that 20 year time span would only put me in my 50s. I'm scared by the uncertainty of it all but I think having the Mammaprint and blueprint tests done will make me a little less uncertain because it will mean that I have had every test done to help me make the best treatment decision. I don't want chemo but at this point I can't make a decision I am 100% confident in because I don't have all the facts about my situation. What should I do? If I tell my MO to order the tests does he have to follow my decision? I will pay for the tests if insurance won't but I want these tests done for my own peace of mind. I think my BS is just unfamiliar with these tests because it is not her area of expertise. I want these other two tests done but can a MO refuse to order these tests and if he can should I get another MO who will order these tests
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Barred, I was told that agendia now does the suite on all tests. We didn't order the blueprint, but it came in the suite.
I just got declined by kaiser for the test, which I was expecting. Kaiser oncology nurse told me I just sit tight and wait from a bill directly from agendia and they will drop it from 5k down to $500, for both tests. Best money I've spent.
Also, my oncologist was totally on board with doing mammaprint, but only when I insisted I'd pay for it if I had to.
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