NEW Oncotype Dx Roll Call Thread
Comments
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mymountain, they do require a minimum of 2mm of invasive in order to perform the test. I had .5cm of invasive which is more than enough for them to perform the test. I also had 6cm of PLCIS, which I realize they don't perform the test on.
Marianne, yes I agree that the oncotype is a great tool, and I am having difficulty understanding why I am not able to benefit from this test. I think part of the reason that it is such a great tool is that it looks specifically at each individual's tumour, rather than making a blanket statement of how each person's breast cancer is going to behave. So based on the information I have right now, there is no valid reason, why they are not able to perform the test and this concerns me. There is enough tissue to perform the test, but for some reason the hospital has not sent all of it? My question now is why? I have a pathology report (thank goodness I have copies of everything) that says there was 27 slides, of which there was .5cm of invasive. So what is the problem?
My oncologist unfortunately is on holidays until March 15, so I will discuss with him then what to do when he retursn. He states, that they really don't know when and why breast cancer does what it does. Sometimes small tumors are more agressive and require chemo and sometimes large tumors are less agressive and don't require chemo, hence why this test is so beneficial and helps to take out some of the quess work.
Cathy
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Hey Kat......CONGRATULATIONS on the score of 16! I think that is fabulous. Try not to worry about the micro met. I had Isolated cells in my node too but the oncologist said that it happens a lot from the biopsy and with Tamoxifen and radiation to follow up, it isn't an issue. I'm really happy for you.
Take care,
Nancy
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More information below explaining the Tailor X study and OncotypeDX. This came from this website.
WallyC: Has there been a determination for the intermediate OncotypeDX score and chemo cut-off for node-negative?
Answer -Kathy Miller, M.D.: No. We still struggle with the potential benefits of chemotherapy for women with ER-positive tumors that have intermediate Oncotype DX scores. In this group, there may be no benefits from chemotherapy or the benefit may be as high as 4-5%. That leaves women and their oncologists with very difficult decisions. This is essentially the difficult decision that all women faced before the Oncotype test was able to identify the low and high risk groups. This is why the current TAILORx trial, which randomizes patients with intermediate scores to hormone therapy alone or hormone therapy plus chemotherapy is so important. We suspect that many women in the intermediate group don't need chemotherapy, but the current test simply can't clearly identify them.0 -
So far my oncologist has told me that chemo would give me a 6% benefit, so the oncotype test would/was something of great interest to me. Should or shouldn't I do chemo.
I spoke with the lady who is running the clinical trial at my hospital the other day, and it would appear the tissue isn't missing, but rather they don't have 2mm of invasive to give to California. This really annoys and frustrates me. Why don't they have 2mm of invasive to give to California? I have a pathology report that says there was 5mm, so I don't think it is rocket science to figure out 5-2=3? There should be more than enough tissue in order to perform the test, so where is it? Or did it never exist? I see my oncologist on Wednesday, so I am going to ask for a reread of my slides. It makes a big difference in my mind whether or not I had an invasive cancer. I know there isn't anything I can do now about the bilateral mastectomy, I can't change that, and whether or not I would have had a unilateral vs bilateral had I not had invasive, who knows. But I do know the affect on me physchologically, I need to know, or even if it is less than 5mm, I want to know. Here in Ontario there is currently a big news story of a woman in Windsor who had mastectomy in January and now found out she didn't need to because the pathology was wrong. The pathologist is now being investigated. This is all enough to drive one crazy.
Cathy
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Diagnosed 12/15/09 with large excisional biopsy, lumpectomy 2/5/2010. Positive biopsy tissues 1.2cm, positive lumpectomy tissue .9, clear margins, 0/1 node clear. Just got Oncotype score 17.
Only a temporary med. onc. in area here. Said chemo before the onco score in. Rad.onc. says no chemo indicated to him and wants to start radiation next week. No reply from med onc after he got score. Trying to get an appointment with another med onc. Do not want chemo but don't want to bypass something that will give better results. Guess I just want a good med onc to affirm this.
I am 63. One strange test result (of many strange things on this journey): original path report from biopsy said Es+, Pro.0. Surgeon used those first results. That is one reason the med onc gave for chemo. Oncotype test said 11/12 es pos and 7.5/12 Prog pos! Anyone have thoughts on this? Just want to make a decision and move through it. Thanks!
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Hi All,
Cathy, I hope you are able to figure out and have peace with your treatment.
I am new to this site and am trying to make sense of the chemo or hormones. I am 48 years old, post menopause, stage 1 1cm / grade 3 tumor er+ her- and my onco score is 24 16%.. The pathology said pr+ 1% but the oncodx said pr-. not really sure why they are different.
I am trying to decide about the chemo or homones... My surgeon initially said hormones but then sent me for a radiologist and oncology consultation. The radiologist explained the protocol for radiation but also said in her opinion she thought I should have the chemo. The oncologist said it was her personal bias (exact words) for me to have chemo but that I should also consider the tailorx study... I am going for a second opinion on Wednesday at Memorial SK... but not sure tht I am expecting different recommendations
I would appreciate any feedback and guidance... Many thanks, Barbara
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Evening Barbara,
Sorry you have to go through this, these decisions aren't easy. I was diagnosed a couple of months back. I had a bilateral Masectomy and my onc recommended chemo because I was grade 3, but I am stage one. I wanted to hit it with everything I could, while I still could. My oncotype score came back while I was doing chemo 7% reoccurence, even though that is low, onc still said grade 3 was agressive and chemo was insurance, all of this is a personal choice. I'm done with chemo. My last chemo wa March 11th. I got through it, it was not easy but doable. Feel free to PM me if you have any other questions, it's on to hormonal therapy for me now. Be your own best advocate, do some research, get some feedback from women who have been there, and go with your gut instinct, it's your body. I hope I helped CS
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Waiting for onco test results. I am being told that I most likely will not need chemo since IDC was so small (6mm/including clean margin), no node and ER+. My concern is it was grade 3. Just waiting, but has anyone had a low stage, high grade and not needed chemo? I had a BMX on March 1 and was told that also factored in vs. lump. Any info would be appreciated.
Thanks!!!
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Waiting for onco test results. I am being told that I most likely will not need chemo since IDC was so small (6mm/including clean margin), no node and ER+. My concern is it was grade 3. Just waiting, but has anyone had a low stage, high grade and not needed chemo? I had a BMX on March 1 and was told that also factored in vs. lump. Any info would be appreciated.
Thanks!!!
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kmid and Barbara it must be so difficult trying to make these decisions. I think the Oncotype appears to be a wonderful test that gives us additional information to make these decisions, but I also think that we hope that they come back with a very decisive number ie. very very high or very very low. Thinking of you while you try to decide.
Dublin I was also told would not likely need chemo because my tumour was so small, no node involvement. I was/am concerned about the pleomorphic which I think increases the grading also. My oncologist now seems to think that without the benefit of the test, not to do chemo, but I will discuss further with him at appt. on Wednesday.
Does anyone know, how soon you have to or should start chemo, if you need to have chemo? Is there only a window of time after surgery that it should start?
Take Care
Cathy
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Hi Cathy,
Yes, there is a window of time to do chemo. I had surgery Bilateral in Dec09, then chemo in Jan10, now I'm done with chemo, 3/10. My onc is giving me sometime to recoop from chemo then hormonal therapy, woot woot! The fun party train never ends. Thank the Goddess above, I still have my sense of humor (I have no idea how) but I'm glad I didn't lose it with my boobs. Anyway, waiting for the Oncotype score can be rough. My score was 7% I still did chemo but I was grade 3. chemo was no stroll in the park but I'm done, I did it. I do not regret my choice. I'm moving on one day at a time, good luck with your decesion and we are all here holding your hand through it. BTW your tumor was smaller than mine, your options will be different. You have VERY favorable stats. Be your best advocate and seek 2nd and 3rd opnions from different oncs. I hope I helped. CS
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Thank to all....I will let you know. The test is underway and should know soon.
Have a wonderful Sunday!
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You can also try Ask an Expert Site on Johns Hopkins if the question forum is open this weekend. Just google Johns Hopkins Ask an Expert and you will get it. They get so many questions it isn't always open but maybe there is a phone number for a consult. Even before I got my Oncotype result back, Lillie at Ask and Expert said I was most likely cured with surgery alone but that hormonal therapy would also be recommended for me. I also got an e-mail from one of their oncologists saying that having had a BLMX, and my stats that Johns Hopkins would normally recommend an AI for me. I have chosen not to do hormonals but just wanted you to know based on my stats with a 1.7 cm tumor what Johns Hopkins thinks is normal.
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Luna5,
thanks for the info!
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Hi Ladies,
I didn't read through all the pages of this forum, so my questions may be redundant, I hope you don't mind if I ask about this test.
I received a "Shared Decison Making" report from my oncologist after my mastectomy in November 09 that estimated recurrance chance with and without therapies.
It doesn't give me an oncotype score or a hormone receptor analysis score. It just gave my grade, tumor size, stage and nodes involved. I asked her at my one appointment about the oncotype score, but I think she just said something like, my cancer didn't warrant the test or something. It is stage 1, grade 1, no lymphnode involvement. I am ER+ and PR+ HR-.
October 08 I had a left mastectomy for DCIS and it was stage 0 so I never saw an onologist. In October 09 a biopsy picked up an Invasive ductal carcinoma tumor that was 1.1 cm. And I had a second mastectomy in November 09. I have my pathology reports, but I don't see anything on there that indicates the Oncotype score or the hormone receptor score.
I didn't know enough at the time to ask the right questions. I think I might have more peace of mind if I knew the scores. She would probably tell me they were figured into the stats on my sheet for my reocurrance
Should I pursue getting this test?
I read the test costs about 3,900. I could have had it done last year when I met my ded. and everything was at 100%. They must have done some kind of testing to be able to give me the information on the sheet she gave me.
What I read on the link below says you should get the oncotype score and the hormone receptor score.
My chances of recurrance in 10 years was over 85% so I chose no additionalI treatment. I know wondering what Tamoxifen might be doing to my body would worry me more than getting the cancer again.
Would you share your thoughts?
Candi
http://www.breastcancer.org/symptoms/testing/types/oncotype_dx.jsp
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Hi Candi,
I am utterly convinced that onc's (heck the whole medical community) frowns on patients doing research. I hear the comments my onc makes, I like her but the "Don't do to much research you'll get overwhelmed" is just odd to me? I think it might be because then I will be less of a pain in the *arse* When I told her I'm listening to other women who are going through it, dealing with Tamox, dealing with side effects. I got that scary deer in the headlights look. My job consist of knowing the facts, it's what I do for a living and unfortunately this means hearing all the bad stuff that could happen if you make a poor choice out of fear, lack of knowledge or not researching enough. Knowledge is power, that's what I have learned. I don't trust the medical community at all. When I met my onc, I liked her, I still like her, personable, caring eyes, compassionate side, good bedside manner but she seems to come up with where I'm going next, what road I am to take. I am not an aggressive person by nature. I admit though I have had to dummy myself up just to get men to listen to me (and are equal in my rank) and have a lot more experience, we're taking years and years, but still no respect?
I hate the fact that I still have to play the "Tee hee, I'm just a stupid girl but if you do this, that and this the problem will be solved." and I'm the senoir officer. Now, I'm playing "I'm just the stupid patient that doesn't want to die, what do you recommend because my life is in your hands." But there are decisions being made for me. I'm going to paraphrase a popular 80's hit.
"Things that make me go hmm...."
My onc sits me down, I just met her and says "Okay, you're grade 3, chemo automatically."
me: Can I have an OncotypeDX test first before chemo?"
onc "Ya, hmmm (Look of sheer disappointment that I can pronouce OncotypeDX test) well, I wouldn't recommend it, I don't really need it."
me (Puzzled look but to scared to say "Could I have it for (((((((gulp))))))) me?
While in chemo I had a ephiphany, I want it for me. This happened to me with my BS (who I actively swooned over) who told me "You could just do a lumpectomy, and get the perfect breast you always wanted." I CRINGED!!!!!! but waited till I got home. I saw a plastic surgeon for my surgeon, not for me. I knew what I wanted but I think they wanted something else. I was hell bent on fighting for a BMX and I had to fight for it. I heard "You'll regret it, you'll regret it." It's been almost 4 month and I don't regret it at all. The surgery was not bad at all. My surgeon did an amazing job, I have healed nicely (knock on wood) but I'm happy that I pushed for what I want. If you're NOT aggressive with the medical community, you're screwed! My onc said Tamox for you now (after my chemo was done) I promptly put on my audio recorder and said "Can I discuss the options with you."
Yep, you guessed it I got the deer in the headlights look, and this is from an onc I respect but WTF? I found myself defending myself because I examined and researched my options. I didn't get my options from random, crazy blogs, or you tube video's posted by frat boys. I read medical journals, books by actual doctors who are called quacks for even attempting to look beyond chemo, hormonal therapy and rads. This is a little scary to me. I say, be your best advocate, research what's right for you and not what makes other people com-for-ta-ble, screw that.
Okay, this was a rant but it was long overdue. I've been through a lot in a short time, (we all have) and the "deer in headlights look" is getting to be a little annoying to say the least. I am already getting it from strangers and friends because I chose a Bilateral masectomy Oh, I can't wait to go back to work and get more looks, happy, happy, Joy Joy and the saga continues. This site is a Godsend!!!!!!!! This has been one hell of a journey in 3 months and it's ongoing......
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Dear Baxter,
I agree with absolutely everything that "cancersucks" said in her post. This is not just about cancer. This is about us (meaning the general population, but particularly women) being told not to question authority and just do as you are told. Now, I respect the medical community greatly. I am glad that we have people that choose the medical profession....but somewhere between medical school and being a doctor, they also were told that "we" weren't supposed to question them. After all, they went to medical school and we didn't.
Let me digress for a minute and answer your question about the Oncotype Dx assay. It is a test designed specifically for "early stage breast cancer patients who are ER+". The test measures the risk vs benefit of chemotherapy. It takes a sample of your tumor to perform the test. It does cost about $3,900; most insurance companies will cover it, but if they don't, the company will give you an application for assistance and depending on your income, they may be able to help. It takes about 10-14 days to get the results. The score comes back like this: 0-18 means chemo would have no benefit for your particular type of breast cancer; 19-30 is in the grey area, and anything over 30 will highly recommend chemo.
Now back to the philosophy.....I, too, think it is ridiculous that the medical profession doesn't inform us about these tools out there. I uncovered the test by doing what we should all be doing....research: in the library, on the internet, talking to bc survivors, etc.
I was fortunate that my oncologist was receptive to the Oncotype Dx assay and ordered it for me. I was blessed that my insurance company covered it....my score was 19 (just over the "no chemo" line) but my oncologist agreed that chemo would not be beneficial for me; that hormone therapy would be more appropriate in my case.
I made every single decision by taking the medical community's advice, and then doing my own research. My breast surgeon attempted 2 lumpectomy's to get clean margins and so the mastectomy was the smart choice for me. I was the one who decided on the bilateral. These are agonizing decisions that we must make and then we have to be confident with our decisions. It doesn't matter what your neighbor, co-worker, or anyone else thinks. It is your body. It is your decision.
I pray that all my bc sisters find the wisdom and the courage to do their research and make wise decisions.
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Hello: I am a bit confused about posting - I am new to this site but to give you my info - following is what I think applies to me (the doctors I have seen would not give me any written reports for some odd reason - finally I asked AGAIN and the doctor left the room then came back and asked me if I was sure I wanted to know my numbers - I said YES (I only asked for the written reports) and she said, Well your rate of recurrence is 54% but with chemo and hormone therapy it drops to 18%. I do not get it - already I had Onco test and rate was 24% and dropping to 17% with chemo and hormone therapy.
Has anyone else had a hard time getting their information? I am freaking out and ready to just call the entire thing off - what gives? Last week (2nd of 4 chemo sessions) I went into anaphylactic shock. Pretty frightening. The doctor looked at her computer and stated she had forgotten to give me a prescription for premedication. Then the IV was started at a very high rate and frankly I never want to experience that A Shock again - it is the worst feeling in the world.
Has anyone else had these problems?
Anyway, my stats are BLM, R, NB, T/C and FM after the chemo is finished. I have never had cancer before and did not think I was a candidate. But I was exposed to some really dangerous chemicals - toxins and pesticides for about 26 months and I feel very certain this contributed to the cancer although the doctors are not interested and only state they do not know what causes cancer.
thanks for reading -
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Hi Baxter your pathology report or your "Shared Decision report" won't have your Oncotype test score. This is a specific test that your oncologist would have to send your tissue away to California in order to have the test done. Did the doctor tell you that you didn't need the test when you were diagnosed with DCIS? They can only do the Oncotype test on an invasive breast tumour. So the doctor may have told you they couldn't do it on the DCIS. I am not sure if the test has to be done within a certain time frame. I do know for the clinical study, you have to enrol within 84 days. Are you seeing an oncologist now? Ask for the test, it may help to give you some piece of mind.
svenmydog I learned very early on in this process to ask for copies of everything and I am so glad I did. It is your right to have them. Sometimes if may be necessary to get them from the medical records department and have to sign for them or pay for them, but it is well worth it. You need to know these things when you are researching.
I agree with the other ladies here. We must be our own advocates. Gone are the days when a doctor would say jump and patient would say how high. Now we have to say why? and I want the reports to say so.
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Dear Cancersucks: Thanks so much for your thoughtful words.. I am trying to figure this out and hopefully will get to a point where I am comfortable with my decision.. Thats what I know that at the end of the day I need to be able to sleep with whatever choice I make about the chemo
Luna5... I found the Hopkins ask the expert site and sent an email request which was answered. They said to talk further with the oncologist but also said that most women with my stats opt for the chemo... More to think about
svenmydog: I am so sorry you are having a hard time with the chemo and with getting your reports. I don't really understand and not sure what the laws are about medical records where you live. I beleive it is important to be our own advocates and get all of our records from the doctors, pathology reports, onco reports etc. And copies of films if you need to ever go for second opinions. It makes no sense to me the doctor would not readily give you the reports... And as formykid said, get the reports from the medical records area if you have.
Thanks so much again and will let everyone know about my second opinion next week... By the way I am in northern NJ. We just had a major storm and are without water for a unknown amount of time. I actually went to my gym, not to exercise but to use the shower today... At least I had a reason to go back and see an exercise facility. Got me motivated to think about exercising again.
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I know of someone who got the OncotypeDX test done a year after her Mastectomy when she wanted to go off Tamox. The hospital has to keep the tissue for a very long time due to lawsuits.
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Always, Always Question. Always, Always do your research.
My oncologist insisted that I do chemo. My oncologist insisted the OncotypeDX test would not change the fact that I needed to do chemo. I begged and pleaded to have the tissue sent.
My OncotypeDX score was 0. 0% local recurrence and 3% distant recurrence.
Then my oncologist insisted that I go on Tamox even though I am post menopausal and have had a HYSTY/Ooph...because the Oncotype test is based on using Tamox for 5 yrs.
I then had to get another doc to order the CYP2D6 test because oncologist would not order it for me. Guess what??? I am missing one of the alleles on the gene and therefore would be an intermediate metabolizer of Tamox. It might not work for me at all.
With my stats and OncotypeDX score... I should NOT do chemo.
With my CYP2D6 score...and the fact that I am post menopausal...I should do an AI if I was going to choose to take any hormonals at all....even the guy at Genomic Health said that Yes the Oncotype test was based on Tamox but now that AIs are here, my chance of recurrence should actually be LOWER on an AI than Tamox.
Without the AI or Tamox...I'm not sure...but I think my recurrence chance goes up 40%--50% so I guess up to 4.5% distant recurrence in 10 yrs. I chose that.
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Luna5,
What is the CYP2D6 test?
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Luna5 I don't want to say you are "lucky" that your oncotype score came back at 0, because I don't think anybody who has been diagnosed with breast cancer is feeling "lucky". At least I don't, and hate when someone says to me, "Oh you are lucky it is this that or the other thing, because right now I don't feel lucky at all. This is not a nice place to be. Maybe someday, I will feel different when some time has passed, but not right now.
Can you tell me what is the CYP2D6 score? Is this a blood test that they can do to see if your body will metabolize tamoxifen the way it is supposed to? Also how and when do they know if you should have ovaries removed? Isee the oncologist this week and I think he is going to recommend going on tamoxifen in lieu of any Oncotype results.
Thanks Cathy
Thanks Cathy
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CYP2D6 test is to see if you have both alleles on that gene. If you have both and utilize Tamox the way it is intended...they call you an extensive metabolizer. Seems to me that should be a "normal" metabolizer but whatever. If you have only one of the alleles, then you are an intermediate metabolizer. Some docs double the dosage. Some don't. Some think people don't need as much as the usual dosage anyway. If you are missing both alleles, "poor metabolizer" then there is no point in taking Tamox.
My onco would not order the test for me...said.."Tamox works for everybody".
But remember...as far as I can tell...up to date "mainstream" oncologists would always recommend an AI for anyone post menopausal and/or post Hysty/Ooph like me unless they cannot tolerate any of the AIs or have other medical issues that cause a preference for Tamox.
I have chosen not to take any....but most would normally want me to try an AI but would probably be okay with me choosing Tamox instead if I wanted. Only problem is my onco also did not ask anything about my medical history. I have some issues that I think would be exacerbated by Tamox.
If you can't take benedril and other things with Tamox...then my guess would be that benedril would probably work only half as well for me as for "extensive metabolizers" if it uses the same CYP2D6 gene...not totally sure if that is correct. There are a bunch of these CY genes. All this allele and gene stuff explains why some people swear by one drug when others say it doesn't work for them at all. I know some who think Claritin is great and others who say it doesn't work for them at all.
It would be a shame to suffer the side effects of Tamox only to find that you are a poor metabolizer. So, I would insist on the test if you are taking it. I had to get my surgeon to order it for me when the onco wouldn't. I was still researching it and trying to decide if I would take it when I finally got the results.
There is some research that says the reason they limit Tamox to 5 yrs is because at some point cancer cells learn to use it as food. I wonder if they have ever checked to see which kind of metabolizers this happens to. Sorry...a really "out there" thought. I have those.
This is a very difficult process. There is no one right answer. It would be a lot easier if there was.
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Cathy...your question about ovaries.....don't really know. I asked for Hysty/Ooph because I had already had a D&C for a polyp and a D&C to make sure it didn't come back. Before BC, doc and 2nd opinion doc both agreed that we should continue scraping any new ones out as many as 5 or 6 times instead of Hysty/Ooph. After BC, when I asked...all docs said sure have Hysty/Ooph. Not sure if it was just ...hey why not give her peace of mind she's been through enough ... or if they really thought it was a good idea. I have been asking my gyno for years why we are always told that routinely spaying dogs is good because it keeps them from getting cancer but we don't do that for people. So, really can't say if my having a Hysty/Ooph was overkill and a stupid thing to do. There are many on these threads who have researched this and believe it should not be done unless medically warranted. I had already made the decision to get those parts out so I wouldn't have to watch them so carefully before I read some of these people's comments. I am not sorry about my decision. But, if I have read these people's comments sooner...I might have done more research before deciding. I could have waited longer to decide and done more research.
When diagnosed with this awful disease...we are pushed to make major life-changing decisions in less time than we take to pick out a new car or buy a house..... Soooo..In Hindsight...I would suggest taking time to breathe and research as much as you can so that you will be confident that you have made the right decision for you. Luckily...even though I now know I could have taken a little more time to decide some of the decisions....I would make all the same decisions again.
You need to own this. If I had been pushed into chemo that would not have benefitted me just because I was referred to an onco who always pushes it....I would have spent the rest of my life being furious and feeling totally abused and angry. I would have had a really hard time letting go of that. That would have been very unhealthy. So, that is the main reason why I so wanted the OncotypeDX score to not come in in the gray area but to be definitive and make a clear decision up or down for me....and it did. So, yes that was "lucky" because it gave me a way to make what I consider to be a rational choice in the hardest decision of my life. Plus it was "lucky" because it validated the decision I most likely would have made anyway unless it came in high.
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Had my simulation today. Not really hard but lots of anxiety. Did get a copy of my Oncotype test with a 17 score. Tried to get an appointment with another med onc. in a major city where I had my surgery. Nurse said it would take weeks! I really don't think so-just want a consult/2nd opinion. Temp. onc.here said 7 rounds of chemo, etc. a few weeks ago. I feel that is overkill.
Went by path lab to get complete copies of biopsies (core and excisional-used a different surgeon for these than lumpectomy). Records said I needed the 1st surgeon's permission! I could not believe this but they wear you down.
Anyway, I don't start rad. for 2 weeks-don't know why. Tech said they had a "plethora of cases."
They certainly wear you down but I am moving to a new mental place. I just want to be sure what to do and then do it. The individual and personal advocacy nature of breast cancer is so evident.
Regards to all-haven't written a great deal but posts are so valuable and comforting.
Kathy
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I would like to be added to the thread: age 58, DX 2/12/2010/ILC, 2 cm, Stage IIa, Grade 2, 0/3 nodes/ ER+/PR+, HER2-. Lft mas, SNB on 2/27/2010. No chemo. Arimidex for the next 5 years. Oncotype DX : 14, received today 3/16/2010.
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Hi everyone, I just need to ask.....
How valid is this test?
Not unlike most young women (and some older women) I was a grade 3, but my Oncotype score was 6% distant reoccurence, does it even matter since I'm grade 3?
My onc still said I needed chemo and is very worried about the grade 3 status I am ER+ PR+ Hers2- . I am Stage 1, but I still feel this sense of doom because the fact that I am a Grade 3, no matter what my OncotypeDX number is. I'm glad that it's low but breast cancer seems to be a crap shoot no matter what the OncotypeDX score is, am I alone thinking this way?
Don't get me wrong, I will live my life a lot more fuller now, and won't take one minute for granted but the fear lingers. I know it does for many....
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Dear Cancersucks.....OncotypeDX score is on YOUR TISSUE and how aggressive IT is.
Read my former posts and you will see that I, along with many, many others, say DO YOUR RESEARCH. If you choose chemo, then fine. You need to be happy with your decision. You need to own it.
I don't know anything about your oncologist. But I can tell you about mine who was highly recommended. My oncologist would also recommend chemo to you and would disregard your OncotypeDX score. Read my posts about my oncologist fighting me on every test and also does not know anything about Vit D 3's connection to BC and thryroid issues...but that's another story.
My oncologist slipped and said something about being afraid of being sued for NOT recommending everything. (I have since been told on another thread that a lawsuit can also be filed FOR recommending unnecessary chemo). I'm not sure that would be easy to prove since the NCCN guidelines which can be found online give several options for oncologists since this is not an exact science with one right answer. So, I think it would be easier to sue an oncologist for not recommending chemo than for recommending it. I think my oncologist believes if everything is thrown at this disease, then everything was done. Interesting...my oncologist did not recommend any nutritional things at all....
So...take a breath...and think this through. Are you the type who needs to KNOW as much as possible???? If so, spend 3 weeks researching EVERYTHING. Some medical journal sites think I am a doctor! OR are you the type who has a doctor you are willing to trust your life to??? (unfortunately, I do not have that as I found more than 2 major mistakes made in my onco's recommendations...I wish I had one I could truly trust). If you are the type who believes in following your doctor's orders and you feel comfortable that your current doctor is not practicing ONE SIZE FITS ALL MEDICINE as mine is...then do that.
But one thing hindsight has taught me from other people's journey's through this disease....Not everyone else has the surgery as quickly as I did. So, hurry...but take as much time as you need to believe the decision is the right one for you. Unfortunately, there is no one protocol for anyone's stats. Oncologists don't all agree.
I was in the "grey area" with a 1.7 cm tumor....so I decided to let the OncotypeDX determine whether I had chemo....But...I was also leaning toward not doing chemo, so I was waiting for the test to tell me I HAD to do chemo. It didn't...so end of story.
Why don't you call the folks at Genomic Health (I did that before and after my results with questions about what the results mean in real life)...and ask them what it means to have a low score on a Grade 3.
Oncologists have every right to be scared sh%&tless of lawsuits in this overly litigious society of ours....AND they have busy schedules and families and do not put hours and hours in every day for months and months researching this stuff like many of us here....so...they are still recommending what they know. My oncologist didn't even seem to know that a couple of months before our appt a major cancer forum recommended that every one with appropriate stats have the OncotypeDX test. This stuff changes all the time. Check our Johns Hopkin's Ask An Expert Site. There is much there for you. They open for questions from time to time..usually on weekends...hard to catch it open. I finally had a couple of my questions answered and also got an e-mail further explanation from one of their oncologists. They validated my decision to not have chemo with my Grade 2 and Oncotype score. If you happen to catch the forum open...I found that I got an answer within a day or two.
All my best to you as you make this important decision. Having been there, I know the stress, the agony, the uncertainty and the desire to make the best choice...we all do. I have some other health issues that concerned me greatly about chemo beyond the usual warnings of leukemia, heart disease, etc. There are so many wonderful women here who want to help. I'm sure others will chime in. Try different threads if you need to to get other points of view. There are women here who wouldn't choose chemo no matter what and there are women here who choose it for a 3% benefit. It is an individual choice. Many women choose a different path than I chose. I spend a lot of time with the wonderful women over on the Natural Girls thread. There are many, many different treatment choices there as well as on all the other threads. We all support each other and share information but we don't all choose the same things.
Have you been on Adjuvant.com? I'm not sure of the link, but I have seen it posted on some of these threads.
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