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All TopicsForum: Stage I Breast Cancer → Topic: Ki-67 score vs. Oncotype

Topic: Ki-67 score vs. Oncotype

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Jan 19, 2013 07:34PM, edited Jan 19, 2013 07:35PM by neugirl

neugirl wrote:

My hospital did not perform Ki67 which is sorta annoying because it is a piece of the puzzle missing. i wonder if there is anyway to tell based on oncotype score (mine is 11) and mitotic rate (mine is 1). I know Ki67 is included in the Oncotype score, but i have also heard of women having a low oncotype with a VERY high ki67 which to me does not make sense.

what is your experience between oncotype and ki67?

do any of you know of what hospitals perform this test routinely because mine does not include it on the pathology. i don't know why they dont. is it maybe not as reliable? it seems it is a fairly important piece of information that can be used in treatment decisions.

thanks

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Jan 19, 2013 08:08PM voraciousreader wrote:

At the 2011 San Antonio Breast Cancer Symposium, it was reported by the West German Study Group trial that there was a weak association between tumor grade and Oncotype DX score as well as KI 67 measurement and Oncotype DX score. It was further reported that neither tumor grade nor KI 67 measurement can predict recurrence score.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 19, 2013 08:12PM , edited Jan 19, 2013 08:20PM by neugirl

as i understand, ki67 is as important as oncotype for general prognosis.

i wonder what the recommendation is for a woman with a low oncotype and a high ki67

i wonder also why ki67 isnt a standard score that hospitals give to all patients. some women get it and some dont

Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 19, 2013 08:37PM voraciousreader wrote:

My oncologist said the KI 67 score was the "poor man's version" of the Oncotype score. The Oncotype score includes the KI 67 biomarker among its measurements.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 19, 2013 08:40PM voraciousreader wrote:

As far as my physician was concerned, the KI 67 score would only be important if there wasn't an Oncotype DX score.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 19, 2013 08:49PM voraciousreader wrote:

Neugirl... You have already had three opinions and were seen at Sloan Kettering. If you are unhappy, perhaps you can request that your case be presented to a tumor board. However, if a tumor board makes a recommendation contrary to what you want, I think at that point you should consider counseling.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 19, 2013 09:07PM Sneakychiquita wrote:

Reliability is a concern with the Ki67.  The pathologist will generally provide scores for a few different areas of the tumour(s) and the scores can be quite varied.  Most of the literature I've read suggests there is greater reliability with the Oncotype.  This said, if the tumour is large and displays heterogenous properties there is no guarantee that the sample taken for the Oncotype is representative of the tumour as a whole so it's no guarantee either.  I don't think this would be an issue for a tumour of your size, though.  

Extensive LVI, multifocal, and premenopausal at diagnosis (39 yrs of age) Dx 7/22/2012, IDC, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 06/18/2013 Surgery 09/23/2012 Mastectomy of one or both breasts: Mastectomy of my left breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Radiation Therapy 04/24/2013 Chemotherapy 12/05/2012 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol
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Jan 19, 2013 09:25PM , edited Jan 19, 2013 09:31PM by neugirl

@voraciousre, like others on here, im trying to learn about information regarding breast cancer.

im not "unhappy" with anything and am interested in gathering information and imo a good place to do that is via a website where there are many women affected by the same disease. i really do appreciate the information you have provided to me on my posts but i do not appreciate constantly being told by you that i need counseling. i would like to come here as a safe place to post questions if i feel i need to ask them. i will get counseling if i need counseling, but like other people, i am trying to learn more about the disease for which i am afflicted. unlike you, i am currently in the very midst of my treatment as i had surgery several weeks ago. perhaps since you are done with those decisions, it is easier for you to have a different perspective, but for me, i am in the midst of making decisions and as everyone knows these decisions are not easy.  thanks.

Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 19, 2013 09:27PM voraciousreader wrote:

Sneaky.. ASCO has not included the KI 67 measurement as part of routine testing because of lack of universal standardization. Furthermore, you are also correct regarding the Oncotype DX test. It was also reported last year that some researchers were questioning the accuracy of the Oncotype DX test because of the heterogenous properties of each tumor.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 19, 2013 09:35PM neugirl wrote:

@sneaky, thank you very much. that makes sense. that must be why they do not order it routinely

Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 20, 2013 03:39AM riverhorse wrote:

Dear neugirl.
I think you are looking for answers and certainty that just don't exist. I had an Oncotype. Score of 25, no LVI. And a low mitotic score of 1. When I decided against chemo my onc agreed but added "it's a crapshoot". Not a very comforting response but true. We all face the same awful situation. Regardless of grade or stage there is just no way to be sure about a breast cancer treatment or prognosis. Like many others I made my decision, continue to worry a bit about whether it was the right one, and moved on. Hope you are able to take all the information you have and make a decision that works for you.
Sue

Dx 11/22/2011, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jan 20, 2013 11:13AM voraciousreader wrote:

Neugirl....while this is an "open" discussion board, and one should feel free and comfortable to ask questions and discuss what they want to, it is very important to keep in mind that in the future, other readers might stumble upon these discussions and obtain misinformation from various posts. Furthermore, as riverhorse and many, many other sisters here have told you, you are asking questions that lead to UNDERLYING questions that have NO answers. Without a doubt, doing research and asking questions is wonderful... up to a point. I am not trying to insult you at the suggestion of getting counseling. Instead, I think it might help you, or perhaps other sisters like yourself, who reach the point where you are. Many sisters have been supportive of you by saying we have all been where you are right now. That is, gathering information with a very cloudy mind once we hear the word "cancer" and attempt, with the help of our teams of physicians, to come up with an active treatment plan that we can live with. None of us are ever comfortable with our decisions. Ever! Scores of sisters have so eloquently told you the same. Even you said that one of your doctors said to you regarding treatments that "you never know for sure" who will recur. Perhaps when one reaches the point of asking time and again questions without answers, counseling might be a great way of finding peace with a decision that no one ever feels comfortable making. Perhaps you, neugirl, don't think you need counseling now, but I want to put the word "counseling" out there for others as well, who might eventually find themselves on the same journey as you are right now.


Furthermore, many sisters could only dream of going to get their questions answered where you went, Sloan Kettering. You have had great opportunities to get your questions answered and yet still question EVERY detail and still find the answers to your questions elusive.


For those who may read this post one day, and come to the same crossroad as you, I want them and you to understand that counseling may help now and later. I do not mean for you to interpret this as being CRITICAL. I am trying to be COMPASSIONATE in explaining that counseling can be helpful.

Finally, you say there is nothing wrong with finding information about the disease so you can make a treatment decision. Without a doubt, everyone should do that. But it appears that while you say you are only gathering information so you can make a decision, you have also made it very clear on a number of occasions that you have made a decision and that is that you want chemotherapy. You have also told us that none of your doctors are offering it to you. So the question that I think you should be trying to answer is why do you still feel that you need it? and if you truly believe you do need it, then I think you should find a physician who is comfortable with giving you chemo OR get counseling so you can feel comfortable about following your doctors' recommendations to NOT get chemo. The bottom line is, you can continue looking for support and that's great. But i think with all your questions you are asking, you want to hear the answer that you will NEVER recur and unfortunately, no one has, nor can anyone tell you that. For some, counseling can ease THAT pain which IMHO you are suffering from. I do wish you well and hope you can arrive at a decision soon so that you can get to your "new normal" sooner, like most of us, rather than later.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 20, 2013 02:09PM Beesie wrote:

From ASCO 2011:  

The role of Ki-67 proliferation index vis-à-vis Oncotype DX

Background: Most newly diagnosed patients with invasive breast cancer have node negative disease. A key question in management of these patients is the risk/benefit ratio of adjuvant chemotherapy. Several microarray tests have been developed and are currently used to help identifying the patients who will benefit from adjuvant chemotherapy. Ki 67 proliferation index is less expensive and has been used as a prognostic and predictive factor in node positive breast cancer and neoadjuvant setting. Methods: Forty five cases of T1-2 N0 M0 (ER positive, HER2/neu negative) breast cancer were reviewed. Oncotype Dx results were available for all patients. Tumor specimens were stained for Ki 67. Results: The median of Ki 67 index was 17 (range 2-90). The median Oncotype recurrence score was 17 (range 7-60). There was a strong linear correlation between Ki67 index and Oncotype recurrence score (correlation coefficient= 0.74, P value= 0.000). This correlation was stronger in tumors with Ki 67 proliferation index of ≥ 25. Patients were divided to low risk, intermediate risk and high risk group based on expression of Ki 67. All patients in low Ki 67 group (Ki 67 of ≤ 10) had recurrence score of low or intermediate. Most patients (92%) in high Ki 67 group (Ki 67 ≥ 25) had oncotype recurrence score of high or intermediate. Furthermore, neither semi-quantitative immunohistologic expression of ER and HER2, nor nuclear grade had a significant impact on the correlation between Ki67 index and Oncotype recurrence score. Conclusions: Ki 67 proliferation index is a major but not the sole determinant of Oncotype Dx score. Immunologic expression of ER and HER-2 do not significantly impact this correlation. Ki 67 proliferation index can be used to identify patients with a high probability of having increased Oncotype Dx score and requiring adjuvant chemotherapy.

As I read this, my take-aways are:

1) there is a strong correlation between the Ki 67 result and the Oncotype result

2) a low Ki 67 result will result in a low-to-intermediate Oncotype score 

3) a high Ki 67 result will likely result in an intermediate-to-high Oncotype score

4) patients with a high Ki 67 result should have an Oncotype test to determine their Oncotype score and if chemo is recommended; the Oncotype test uses the Ki 67 result but also uses other factors to determine it's result 

So it seems to me that since you have your Oncotype score, and particularly because it is low, there is no need to have your Ki 67 result since the Oncotype, being a multi-variant analysis, is considered to be one step above the Ki 67 result alone. 

neugirl, as gently as I can, I will support what VoraciousReader has been saying. Gathering information and trying to learn as much as you can about breast cancer is a good thing, provided that you do this with an open mind. Getting whatever information you can to understand your doctors' recommendations and to help make your decisions is a good thing, provided again that you do this with an open mind. But I think you've moved beyond that information-gathering stage, and from what I've seen, I think it's fair to say that you don't have an open mind. You have stated many times that you want chemo, even after you've had 3 expert opinions all tell you that they will not offer you chemo. I appreciate that you need to understand why they are saying this. When my oncologist recommended against Tamoxifen for me, I was very surprised and I immediately went home to do my own research so that I could understand what was behind his recommendation. It didn't take long before I got it. In your case, it seems that you have found a lot of information that supports your oncologists' recommendations, but you won't accept this answer. You've said so yourself. You want to have chemo. So you continue to search, looking for any small piece of information to prove that your risk level is higher than your doctors believe, or the benefit from chemo will be greater than they say, or something, anything, to turn the argument in the direction that you want it to go. 

The fact that you've continued to search and still haven't found anything to suggest that chemo would be beneficial to you is actually a good thing because it confirms, over and over again, that you have a low risk diagnosis and a very good prognosis. You should be celebrating that.  I hope that you are able to get yourself to that point soon. And if you can't, then talking to someone who can help you deal with this would be a good idea. Breast cancer - no matter how good the prognosis - comes with no guarantees. That's not easy to adjust to, but it's something that we all have to adjust to. For most of us, our diagnosis of BC is the first time that we've ever had to face our mortality. That's scary, especially when there are no guarantees. Many women benefit from the help of a counsellor as they first try to work these things through. There's nothing wrong with that, and they are stronger and better off for having done it. It's something else you should keep an open mind about.

By the way, I didn't see a counsellor to help me deal with my BC diagnosis, but this wasn't my first big trauma. I did see a counsellor to help me deal with that first big trauma in my life. All I needed was a couple of visits, and then I was able to deal with things on my own.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 20, 2013 03:37PM curveball wrote:

@neugirl, I will only add this to the wise words of voraciousreader and beesie. If you aren't comfortable seeing a counselor one on one, there may be a support group near you for cancer patients in general or breast cancer patients specifically. I'm in such a group and have found it really helpful to talk about fears and issues and bounce my decision making around with others who really "get it".

You might, too.

Oncotype score 28--Age 56 at initial DX--mets found at 57 (but I suspect they were there from the start)--mixed IDC & carcenoid (neuroendocrine) tumor. Octreotide (a carcenoid treatment) June-Sept 2013, failed. Dx 3/23/2012, IDC, 1cm, Stage IB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Dx 2/26/2013, IDC, 1cm, Stage IV, Grade 2, 1/13 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 01/10/2013 Arimidex (chemical name: anastrozole, class: aromatase inhibitor) Hormonal Therapy 04/07/2014 Hormonal Therapy 06/03/2013 Aromasin (chemical name: exemestane, class: aromatase inhibitor) Chemotherapy 01/22/2014 Doxil (chemical name: doxorubicin) Chemotherapy 10/30/2013 Taxol (chemical name: paclitaxel) Chemotherapy 07/18/2012 CMF: Cytoxan, methotrexate, and fluorouracil
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Jan 20, 2013 05:24PM , edited Jan 20, 2013 05:25PM by neugirl

@voraciousre,

I do believe it is possible to get a little ahead of oneself and think that you know it all, but unless you are doctor, which as far as I understand you are not, you should really leave the scientific theories to the scientists, the moderating to the moderators and the recommendations for counseling to the doctors. As softly as I can put it, I find it a little paternalistic, a little condescending and quite frankly a little bit much to continually insist that another adult, who I must add you know nothing about and have never met, seek counseling. I do not wish to be confrontational, but you and I are at very different moments in our treatment timeline. Your “counseling” mantra has been consistent now on quite a few of my posts, some of which, I might add, have not even mentioned chemo. Its getting a little old. Trust me, at 2 years out I will be able to be just as confident in my chosen treatment plan as you are. Unlike you though, I won’t be making an effort to edit what other women who are newly diagnosed post on these boards and I won’t be telling other adults to get counseling. Ill let them come to their own decisions about that as its their business, not mine. Ill try to lend a helping hand and if I don’t feel I can do that, ill leave them alone.

Unlike you, I was diagnosed A FEW WEEKS AGO, so please allow me to express my concerns upon this board without be monitored by fellow members. Certainly if the moderators believe I am out of line in my questions, they will let me know and I will certainly comply with whatever they tell me. As far as I have seen, the concerns I have raised have been raised before and there is no spreading of misinformation. Most women know I am just a woman with breast cancer and not a doctor. If they find that something im saying is not correct they can certainly decide to ignore me. I am sure they don’t need you to be editing my posts for them as we all are capable of forming our own thoughts. No one will be taking treatment advice from me, as I am not offering it. If my questions seem repetitive to you or irrational or emotional or whatever, please, by all means, you and anybody else who is bothered can block me or choose not to read or respond to my posts. There will be no hard feelings here. This site is plenty big for the both of us. But it is becoming uncomfortable that every time I post on these boards, which are open to the public, you respond back with some advice that I seek counseling or that im acting irrational or my question is bad or I should just move on and get over it already. 

As for this question, since I am in the very midst of my treatment, I am simply pondering whether I should request my ki67 score from my hospital or a second opinion pathology because I am thinking it might be something useful to have. I was trying to gather information on it. Maybe that’s an irrational request. Maybe im crazy. Maybe, maybe, but Oh well, then im crazy. Im trying to make the best decisions I can to be here for my family in the future. You can think whatever you want about me and my “cloudy” thinking. I really don’t care. You can think I need counseling, that im having a hard time with things. Be my guest. But with only a few weeks to digest a breast cancer diagnosis and being in the middle of my treatment decisions, I think im doing just fine. I am sorry if I have not reached closure yet and that you find that annoying. I really am.  But as I have said repeatedly, you and I are at different points. You have had over 2 years to digest your diagnosis and to research and to plan. I’ll know a lot more myself in two years, but I will tell you, Im not going to be coming on here telling other women how to act, trying to get them to stop posting because I don’t like what they are saying.

I would also implore you to seek counseling yourself. Typically before placing judgment on others or attempting to edit another person’s behavior, we should take a look at ourselves for there is often much work we need to do on ourselves. We should see whether we are acting controlling or judgmental. If we are, we should ask ourselves why we feel the need to be that way. You may be trying to be “compassionate” but IMHO, you need to be a little less paternalistic. Lucky for us, we all have choices and we all get to make the ones that are best for us. Recognize that in the first weeks of diagnosis, there is a lot going on. A lot of information to absorb. There is no right or wrong way to act. There is no such thing as a stupid question.

Maybe I am worried. Maybe I am scared. Maybe I wanted chemo and feel nervous not getting it. Maybe I have asked a lot of questions. Maybe there are no right answers.  I am not the first woman and I certainly wont be the last. Sure there are plenty of women who would think I am crazy. But really its no ones business to tell another woman how to act or how to think or what to do. I ignored it on the other posts because I find it childish, but you and a few others should just please leave your judgments and your opinions to yourselves.  We are all entitled to our opinions about the way others act. I have got a few of my own, but I for one won’t be forcing my way of thinking on anyone.

I really did not wish to have another conversation with you about my decision whether to have or not to have chemo. I asked about Ki67 score in relation to oncotype. I never mentioned chemo. I reiterate, if no one wants to respond to my posts because they find me annoying then they really don’t have to respond. My life will go on if no one responds to me. The compassionate thing to do is to let women use this forum in their own way and to not pass judgment on them each time they make a post. 

Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 20, 2013 05:40PM Cowgirl13 wrote:

neugirl, I get the hit that your anger is keeping you stuck in this process.  It took over 3 years for me to begin to feel mine.  They say there is a lot of anger when one has been diagnosed with BC.  just a thought.

Dx 5/28/2009, IDC, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jan 20, 2013 05:54PM , edited Jan 20, 2013 06:43PM by neugirl

@beesie, i do appreciate that you agree with what voraciousre is saying and that is fine. like i said, we are all entitled to our own opinions and like voraciousre you have had plenty of time to think things through. Like I said to voraciousre, I have had a FEW WEEKS, so im sorry if im not meeting your timeline to find closure. Let me just say though that your comment that i keep searching for reasons to have chemo is ridiculous and unfounded and has been said again and again without basis. You don't know anything about me.  i made a post which said that i had a low oncotype and that i wanted chemo and i also said on that post that i am following my oncologists treatment recommendations against chemo. I never realized that when i made that post i would have to defend any and every question i would ask on this site in the future to a group of pseudo moderators. If i sound annoyed, it is only because i can only deal with so much paternalism for so long. You and voracious re have continually made clear on post after post that you think that im searching for any possible reason to have chemo. Well you are wrong and its getting old. I want to learn about ki67, i guess im a criminal. 

i have to be honest also, neither you or voraciousre are doctors so please stop acting like you know everything about what my risk is and isnt. If i can get my ki67 score, i say why not. it has nothing to do with accepting or not accepting anything. Please stop acting like you know me and you know why im asking things and you know what my motives are. its really silly and innaccurate. ive had to listen to how i don't know how to interpret information and how im acting irrational and how im digging under rocks to get chemo and it is getting to be a real drag. 

Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 20, 2013 05:57PM , edited Jan 23, 2013 12:30PM by neugirl

This Post was deleted by neugirl.
Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 20, 2013 07:21PM riverhorse wrote:

Dear neugirl

Just wonder why you come here for advice when you have wonderful doctors at your disposal and as you point out no one here is a medical professional. At the risk of offending I really think you are wasting your time and the time of those trying to respond to your concerns. Perhaps you should seek another source of information.

Dx 11/22/2011, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jan 20, 2013 07:22PM neugirl wrote:

i dont know riverhorse, why do you come here? at the risk of offending you ARE wasting your time!

Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 20, 2013 07:25PM riverhorse wrote:

: ) good luck!!

Dx 11/22/2011, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jan 20, 2013 07:26PM neugirl wrote:

most thanks and to you too dear. im glad we are reentering middle school. you seem really happy with yourself

Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 20, 2013 07:29PM neugirl wrote:

and may i just add, bullies will be bullies whether they are 5 years old or 50

Dx 2012, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 20, 2013 07:52PM , edited Jan 20, 2013 07:55PM by Beesie

neugirl, I'm sorry. I truly didn't mean to offend you or upset you.

The purpose of this board is to share experiences and to get support and advice from others. Some who comment will be going through the process at the same time that we are, and with them we can share the immediacy of the concerns and emotions. Others who comment will have finished their treatment and may even be several years out, from them we can get a long term and a bit broader perspective. When I first joined and I was looking for advice and support, I found both sets of inputs to be equally valuable. Personally, I've been hanging around here for 7 years now and the most important thing I've learned is that we are each different and we handle our diagnosis and make our decisions differently. In my 7 years, I've seen thousands of women go through the shock of diagnosis, the turmoil of trying to figure out the 'right' (for them) treatment approach, and eventually, the coming-to-terms with it all. Everyone goes through it in their own way and at their own pace. I understand and appreciate that.    

What you will notice as you are on the board longer is that one of the things we do here, in an effort to be helpful, is a lot of 'nudging'. We nudge people to get second opinions. We nudge people to ask certain questions of their doctors. We nudge people to challenge what they are told. We nudge people to learn more about their diagnosis or the treatment protocols so that they can make more educated decisions. We nudge people to speak up about their concerns. We nudge people to make decisions that need to be made. We nudge people to get the help they need. We nudge people to get them to move forward when they are stuck. We nudge people to help them get themselves up when they are down. We nudge people to try to get them to see things from a different perspective. This happens dozens of times every day. You've been getting some nudging, not just from VR and myself, but from quite a few people. I'm sorry if you see that as being paternalistic or pressure or lack of understanding. It's really just an effort to help. From your posts, it's appears that you've been struggling and many of us have genuinely wanted to help. But perhaps we've read too much into your posts and comments.   

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 20, 2013 07:57PM CecilyL wrote:

neugirl, i joined just for you because you have been getting a lot of heat. sweetie, you'll be okay. and just ignore some of the above posts. they forgot what it is like to be just diagnosed. and you are welcome here no matter what riverhorse says. she is an abberation on these boards and if you hang out here as i have you will find many others who can offer you support. i can sense the frustration in your posts and just know that you will ultimately make a good decision for you and you will get your life back. i know the decisions are hard. im making them myself and they keep me awake at night. i just wanted to say hello and let you know you are doing nothing wrong. i don't know why anyone would come here to be mean to someone who was just diagnosed but it is probably for the reasons you say, they just do not feel good about themselves. be well.

cecily

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Jan 20, 2013 08:06PM CecilyL wrote:

and neugirl i have read some of your posts and i don't think you are being over emotional. if it takes you longer than some others its okay. as you say there is nothing right or wrong in this process. just trust your instincts. i do believe beesie is just trying to help. its so hard to really know people over the internet and sometimes things can be misread or people can read your intentions wrong. it happens to me all the time. so i get you girl. just hang in there and PM me if you want to stress out over treatment decisions together. i have a different cancer than you but we are going through some of the same things and we can relate.

cecily 

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Jan 20, 2013 10:08PM 1Athena1 wrote:

Neugirl - I am sorry for what you are enduring. Living with the uncertainty has been one of the hardest parts of my cancer experience. Your reaction sounds understandable to me. I kept to myself in those early days and only came here when I had made my decisions. It is a lonely road sometimes.. I can only tell you that the torturous search for answers continues, but one slowly gets used to the terrible ambiguity. We are nowhere near where we need to be in breast cancer research. Godspeed.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us. Dx 3/2009, IDC, 3cm, Stage IIB, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Jan 21, 2013 05:26AM voraciousreader wrote:

Neugirl... While you claim you have made a decision, your narrative does not match the true reality of your situation and emotion. Several days ago, you mentioned on another thread that you want chemo and it wasn't offered to you AND that you are frustrated. Perhaps you are on this emotional roller coast because, as of now, the decision has been made for you AND you are not comfortable with that decision. Not having control of your decision has also put you on a path to find a morsel of information, for that matter, ANY information, that could possibly be used to change your physicians' decisions. For sure, it is understandable that you are frustrated. I probably would be too! I can't tell you how you should feel a few weeks away from your diagnosis. Nor should you tell me how I or anyone else should be feeling years away from our diagnosis. As Athena said, it is a lonely path towards accepting the uncertainty that goes with a breast cancer diagnosis. That is what the "new normal" is all about. As I mentioned in my earlier post, throughout this discussion board, scores of sisters have so eloquently told you the same thing in their own unique and heartfelt way.

I hope that you can find some quiet, peaceful moments to go back and read some of the other narratives from those other supportive sisters. I hope at some point, some of what they say might resonate with you. I recall one post describing the difficulty of accepting situations that are out of our control. I recall another post where our sister described how she survived grueling chemotherapy and now still deals with each day a higher chance of the cancer returning than you who has excellent prognostics.

No one is telling you how you should feel or behave. As I have said to you before, from what you write, I get the impression you are an intelligent and frightened AND now frustrated sister. I don't mind if you are angry at me for beating you over and over again with the suggestion of counseling. However, as I said earlier, if other sisters come along and read this "open" discussion and decide after reading this that they have reached the same crossroad as you, I want THEM to know that counseling IS an option that can ease their pain.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 21, 2013 07:32AM Rdrunner wrote:

ok Im weighing in here.. this is not a competition as who has the worst cancer or the hardest time etc. It is individual for everyone, no two situations are the same, even two exact same cancers in two different bodies will react differently etc etc.. this site is not meant to be a place for chest puffing and Im right youre wrong and getting the last word in. It is a place where doubts or questions should be asked or voiced within a safe environment that is respectful.

Also just because one has an opinion and every right to have that opinion does not make one right. For the record I think we all need to stop and think how our posts are preceived and intrepreted.  Some while written with help in mind may come across as arrogant, condescending, know it all and down right insulting to some. And the bottom line is that we all are happy with our own individual choices and decisions and treatment.

Dx 11/23/2012, IDC, <1cm, Stage IIB, Grade 1, 0/4 nodes, ER+/PR+ Dx 11/23/2012, ILC, <1cm, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+ Dx 10/23/2012, ILC, 6cm+, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+ Dx 11/23/2012, DCIS, <1cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+ Hormonal Therapy 04/30/2013 Surgery 11/22/2012 Mastectomy of one or both breasts: Mastectomy of my left breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Surgery 09/11/2013 Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast Chemotherapy 02/05/2013 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol
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Jan 21, 2013 09:10AM , edited Jan 21, 2013 09:10AM by Beesie

Rdrunner, from your comments, and because there are more people reading here than posting, I feel that I should clarify my reasons for posting to neugirl. First and foremost, I've simply been trying to answer her questions. In this thread she asked several very specific questions about the relationship between the Ki 67 result and the Oncotype score and I provided a piece of research and some comments that directly addressed her questions. Earlier neugirl asked about recurrence after a BMX with implant reconstruction and I answered her questions. She asked about the impact of tumor location on recurrence risk and I provided research and answered her questions. 

The other thing I've done, in response to neugirl's comments, questions and concerns that she's voiced, has been to provide information that explains and supports the recommendations of her doctors. That's the piece that I think it's important to clarify here. It's not that I - or anyone else, as far as I can tell - have come up with our own recommendations on what neugirl should do. I'm not offering up my own opinion. What I've been doing is commenting on and explaining the information (her Onctoype score) and recommendations (from 3 different medical oncologists, I believe) that neugirl has received. neugirl has consistently received the same treatment recommendations from every medical expert she's contacted. neugirl herself has said that one of her oncologists commented that "you would have to be insane" to give chemo to someone with her Oncotype score. After this, neugirl herself said "I want chemo but no one really willing to offer... its so frustrating". I understand her frustration, I really do. So I've been trying to help neugirl understand the reasons for the approach that her doctors recommend. It's not that I have an opinion and I think I'm right and I'm trying to pressure neugirl to do what I think is right. I've simply been explaining what's behind the unanimous recommendations of all of neugirl's doctors, hoping that she'll become less frustrated and more comfortable with their recommended approach. There's a very big difference. 

Rdrunner, you are right that this "is a place where doubts or questions should be asked or voiced within a safe environment that is respectful." That doesn't mean however that if you voice doubts, the only allowable responses should be from those who reinforce your doubts. Sometimes that's important, but other times it's important to try to nudge someone to move forward.

I really would prefer not have the last word here, but I thought that some clarification was necessary because there are no doubt many people reading here who don't have the full backstory. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 21, 2013 09:34AM yorkiemom wrote:

Neugirl, just go ahead and request the Ki67 already! You don't need the permission of anybody on this board.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-

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