NEW Oncotype Dx Roll Call Thread
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Just got my Oncotype score today: 8. At first, I was elated. Then my MO said the reassuring graphs were for node-negative women and that, with micromets in at least one node, the standard of care still was chemo for women like me. She said the choice is mine: 1) chemo/rad/hormone; 2) rad/hormone or 3) participate in a clinical trial where half get chemo, half don't to help determine what the cutoff score is for chemo being of benefit for women with 1-3 lymph nodes involved, Oncotype score less than 25.
Any thoughts?
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I would absolutely get another opinion or two. Be sure and get one from an oncologist who will not make any money from the chemo given. Also, will send you a PM.
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WaveWhisper, I have similar stats to you. Grade 3, oncotype score of 10, and isolated tumor cells in 1 of 3 nodes. After much debate, I opted for chemo, rads and tamoxifen. It is a really hard decision, and I don't envy you at all. I got 3 opinions from 3 different countries (Canada, US and Hong Kong). Canada and HK said do chemo, just a reduced regimen (TCx4) and the US said no chemo. I resisted chemo for a long time, but in the end, did it out of fear. I'm done now. I did TCx4. I had neupogen injections to reduce the risk, and I have to say that as hard as it was, and as miserable as I was, I got through it, and am glad that I did. If you want to discuss details, PM me. No matter what you decide, it is the right decision. Good luck!
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Windwisper- I considered the SWOG trial(RxPonder). But I had 2 separate tumors, both grade 1. I would have loved to have participated in the trial, but couldn't. I can't remember if node positive for that study was 2mm or>. You might want to check, because you mentioned micromet? Good luck, settling on a treatment plan was extremely difficult for me.
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Coraaleliz, yes it was the RxPonder trial I was eligible for. After a sleepless night, I decided to go with the chemo: TCx4. Down the road, I didn't want to wonder if I should have fought this with all the guns available.
Suz39, I especially appreciated your message, since we are in such similar boats. I will PM you. Thanks for that offer.
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Thought it was interesting that NBC Nightly News last night did a short segment on the OncotypeDX testing. They sent a reporter to the San Antonio breast cancer conference, and I assume that many of the doctors said that was one of the hot new topics.
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The info coming out of the San Antonio confrence is regarding the use of Oncotype testing for DCIS.
Wavewhisper-Glad to hear you reached a decision. Let the sleepless nights come to a halt! Best of luck to you. At times, I think that my decison making process was worse than my treatment,
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Coraleliz, yes, I'm sleeping better now that I have made my decision. You're right about the Oncotype report focusing on DCIS. Another report out of San Antonio said that partial-breast irradiation might not be as successful in preventing recurrence as traditional radiation. I think the numbers were small -- 4 percent recurrence for accelerated partial-breast radiation and 2 percent for regular radiation -- but it may give some doctors pause. I wanted the accelerated treatment, but the surgeon decided against it when she found micromets. Maybe now I'm glad I'm having the full treatment.
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Oncotype 29 (19%).
I start TC x 4 in two weeks. I was very torn about having chemo, but the Onco score settled my mind. When I look at the graph that represents the outcome of my score with chemo, it brings down the rate of recurrence to 5%.
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WaveWhisperer,
I just saw my onc today and asked him about the accelerated radiation vs. full radiation study. He said he hadn't attended the conference but two of his partners had. He also said that the numbers were significant against accelerated radiation. In fact, the recommendation is not to use it as a primary treatment.
Great, I had accelerated radiation treatment in April 2009.
.I said "So what do we do now?". Answer: We keep on doing what we're doing, monitoring tumor markers and being alert to any signs of recurrence.
So far, so good insofar as tumor markers go. My CA 27-29 and CEA bounce around a lot. This time the CEA went down and the CA 27-29 went up but they're both still well within normal limits. I'm to see him again in six months and report any unusual symptoms in the interim.
Waiting for the other shoe to drop . . .0 -
Hi - new here, so glad to find this thread.
Oncotype 42 - 29% distant recurrence rate. Prior to testing, I was expected to do 4 x TC; now I am slated for 4 x AC then 12 T OR 6 ddT (part of a clinical trial, will be randomized into one Arm or the other for the last part of the chemo). Have to wait two weeks to start chemo because i need a port (and my MO insists on a week between port placement and beginning of treatment).
Oncotype also changed my PR status from positive to negative. My ER status remains unchanged, but I am surprisingly close to being negative (currently at 6.6, with 6.5 being cut-off for negative status). So I beat being TN by .1 Wow.
What I don't know, can't find, or don't seem to understand is - does Oncotype give us a local recurrance rate? I mean, what are the chances of my BC returning in my breast? I had a lumpectomy because, prior to testing, no one seemed to think this was a "big deal." Now I'm wondering if I should have considered an MX?
Nancy
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Oncotype score 16. 90% Tamoxifin BMX SNB 0 4xTC, undecided about rads.
I have one TC down....0 -
Oncotype Score 16; 10% recurrence rate w Tamoxifin
BMX SNB 0 4xTC, undecided on rads
I have one TC down, 3 to go0 -
Interesting note on my way to deciding to do chemo...my PS (love him! Takes so much time with me and answers every question patiently) told me that in many countries, he specifically said the UK and Canada, with my profile, negative nodes, BMX, low Oncotype score, no vascular invasion...I wouldn't even be offered the choice of chemo. He said "you'd be done. But guess what? The US has a 29% better survival rate." That was food for thought. Don't want to start a controversy. Just interesting what he said about other countries, and protocol and standard treatments
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Hello Samiam40 My name is Janie and my oncotype score was 2 with a recurrence percentage of 4%
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momof3boys-that is interesting..... I did chemo because of my age. My score was 25 (16% recurrence)
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8% = 12 score (jankc, age 57, LMP, SNB, RAD (X33), AMDX)
I qualified for internal radiation but opted against it for two reasons. Interesting, too, that my MO was also a mindreader because even though I said nothing to him, he told me there wasn't an oncologist anywhere who would recommend chemo in my case (I have an unsettling feeling about Stage 1 and options but I'm not sure how he knew that...). As a sidebar, the woman who called from Genomic was a hoot and our conversation made me consider adding a hearing doctor to my new roster of MDs...
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nancy the oncotype does not give a local recurrance rate only distance. Your MO should be able to give you those % of lump and rads vs MX.
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What is the Chemo treatment TCx4 ?
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My oncotype is 14 with 9% reoccurrence. NSM left sided SNB
I am 26 years old and my MO said tamoxifen 5 years would be good, but would do chemo if I wanted to. Chemo would cut my reoccurrence down another 3 to 5%, but I am not sure it is worth the side effects. My major concern is fertility. Like I said I am 26, newly married, and would love kids someday. The fertility issue makes me want to stick with the MO and just do tamoxifen. I am stage 1, clean margins, no lymph or vascular involvement and negative nodes. Any thoughts?0 -
sjensen29: I spent a great deal of time talking with my MO initially, when we assumed my Onco score would be low. You and I have almost the exact same diagnosis. My doctor was recommending chemo based on my diagnosis, but kept telling me the decision was up to me. I wasn't seeing much of a difference between doing chemo, or not doing chemo. At 48 I didn't have an issue with considering Tamoxifen but only because I'm almost already in menopause. I don't know the answer to this question: If you take Tamoxifen for five years, will you be forever in menopause, or will your cycle return after you quit taking the Tamoxifen?
Remember, too, that that 9% recurrence is distant recurrence - metastatis recurrence. Can your doctor tell you what your local recurrence rate is? Are you also considering radiation?
Also, did your doctor give you the chemo protocol he/she would recommend at this point? Chemo isn't a walk in the park, but it is doable. So far, after my third dd AC treatment today, I have had minimal side effects and continue to work part time and attend graduate school.
In the end, chemo is always out choice (even if it feels like we have little say in the matter). Take your time making the decision, and gather as much information as you can. Everyone's situation is different; you have an early diagnosis and a low Onco score on your side.
I wish you much luck in your treatment and recovery.
Nancy
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NancyHB - I don't believe Tamoxifen throws one into menopause. The body continues to make estrogen and Tamoxifen blocks the binding sites so the body doesn't use it.
I also had a higher Oncotype DX score than my doctors predicted. Mine was 18, but of course that's right on the edge of the intermediate range that it was a little unsettling. Because I was diagnosed at an early stage and my cancers were small my BS looked very surprised when I told her my score. She was certain it was be less than 5.
Sorry your Oncotype was so much higher than predicted. Sounds like you're doing OK. Aren't you glad it was done?
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NancyHB: I am not having radiation as I decided on a nipple sparing unilateral mastectomy. I did this to so that I would NOT need to have radiation due to the unknown long term effects in my age group. So no, radiation is no longer part of the treatment. My local reoccurence was finished after doing surgery. I am not sure what my local reoccurence risk is so something I will have to ask. If I did decide to do chemo with my oncotype of just 14, my MO would do 4 cycles of TC 3 weeks apart. I know it is doable, but it is just that darn fertility issue. No I would not be in menopause with the Tamoxifen. After I stop in 5 years I will still be 32 and my menstration should continue as it did before banking on everything else going okay for the next 5 years...I don't know. If I did chemo, I just want to make sure it is a bang for my buck and not just doing for MAYBE another 3-5% chance of reoccurence. I don't know??
TinaT: I see that you did no chemo and we have similar dx...why did you opt for no chemo at such a high end of low??? Are you happy thus far with your decision?
I am just afraid I am not doing enough for the cancer, but how do I know chemo won't kill me...it is just such a toss up and I could argue both sides very well. I am happy to have the oncotype done and I know being low is good. I just HATE when they leave the final call up to me because there is no way of knowing in the end what is going to happen. I feel like my gut is telling me to just do hormone therapy as this is my weapon of choice. I am 100% ER and 100% PR positive so Tamoxifen is the answer. I just am also fearful that I won't be able tolerate it and then I will end up getting chemo. I just don't want to have any regrets...
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sjensen I had an onco score of 23 with a 14% recurrence rate and decided against chemo. I was 48 at diag and very pre menopausal. No where close in sight. With you being as young as you are I would ask around on the threads for others that have taken tamoxifen and went on to have babies. If I am not mistaken if you will talk to an MO about it I think they would want you to at least finish 2 years of tamoxifen then if you want to try for a baby you can and then go back and finish the tamoxifen. There are others on the boards that have been in your situation. Good Luck
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sjensen29 - Oops, I just edited my last post as I realized I addressed it to you rather than Nancy...it was meant for Nancy.
I like that you said that with a score of 18 I am at the high end of the low range. I usually think I'm at the low end of the intermediate range
. I have a great oncologist who is approximately my age. I asked her the magic question....."If you were in my shoes would you choose chemo?". Her answer was "no". She was very supportive either way, but seemed very much OK with my choice to pass.She first used a database called Adjuvent Online, which is a statistical model (no actual tissue testing). This put me in the low range. She did the Oncotype at my request and we ran all the numbers. I'm older than you so I might feel very differently if I was your age. However, a 2-3% improvement in chance of recurrence wasn't enough to sway me to do chemo. I know that tumor size, grade, etc. is not a predictor of Oncotype score. However, my ILC was 8mm and considered "well behaved". There are no guarantees either way so I kept going back to that 2-3% difference and decided that wasn't enough to convince me to go for it.
Am I happy with my decision? Yes, I feel I made the right decision for me. In fact, it was exactly one year ago today that I had my NSBMX so hasn't been that long. But, so far so good!
It's very difficult, but I have learned to listen to my gut and I'll deal with the outcome whatever it is.
Best wishes!
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I agree with TinaT ... do as much research as you can and ask as many questions as you can and get the Oncotype test and then .... Go With Your Gut!
Oh, and if you are curious; I only did surgeries and keep my estrogen low by avoiding estrogens in food and other products and with supplements. I am not on any drugs.
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Luna5: I am curious what types of foods contain estrogen and any other products?? Why did you not decide to do hormone therapy?
TinaT: I am glad I can give you some more "optimistic" look to your oncotype score
. My MO did the exact same thing. He gave me my oncotype and then did the Adjuvent Online as well in the office. They were both kind of similar as far as numbers and percentages. Your whole post is exactly how I feel, but I guess I just need to be sure of my decision. I have all the facts and now I am just debating. My MO said he was going to discuss it with his other partners, let me sit on it, and then we are meeting again in another 1.5 weeks.MY GUT is telling me to do just the hormone therapy and risk the chemo, but I feel like I am almost so stupid not to do everything I can to make sure it is out of my system you know? I understand the severity of chemo on a person's body (am a nurse in the ICU) and have seen it time and time again. Does anyone else feel that way or felt like that? So far I am happy with my surgical decision doing the NSUMX with immediate reconstruction. As of right now, I think the surgical decision was MUCH harder for me than this one. I think it is because there was this cancer growing in me and I wasn't doing anything about it. Now I did the most MAJOR thing I could and this is just my "insurance" so I don't feel so much pressure...I don't know. Just rambling!
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Information is power - I learned that very early in my diagnosis, especially because things changed so quickly, and so dramatically. I have been blessed with no lymph node involvement, and my scans (so far) are showing no mets. But that Oncotype score (which I am very glad I had done) changed everything, at least for me. 42 is high - just plain freaking high. The tumor is apparently very aggressive. And interestingly enough, the test also changed my PR to negative, and put my ER just one tenth of a "notch" into the positive range - I am almost TN.
My MO has told me that, even with removal of the tumor and clean margins, there is still a chance of local recurrence (once they open you up for surgery there is the possibility of leaving behind one single cancer cell) - hence the need for radiation. Chemo is a systemic treatment; radiation is a local treatment. I will have to do both.
Chemo won't kill me, and I don't fear that it will. It's hard, I admit. I believe I can do great things for short periods of time, and that made the decision to do chemo easier. Most days I'd rather be back last summer, before all this started, living a normal life of running 5ks and playing with my granddaughter. But I will be there again this summer, because I'll be doing what I need to do for my cancer.
If I can offer some advice: First, trust your gut instinct. If you feel you need to do treatment but still are on the fence, ask for a second opinion. Or a third. Doctors don't mind if you do; they won't be offended. And every doctor is different, and may give you new or different reasons for pursuing (or not) various treatments. I am considering not doing radiation when this is all done; once it's done I can't do it again if I have a local recurrence. And radiation makes reconstruction (should I need it) down the road so much more difficult. I am not counting on a recurrence, just cautiously planning for it?
Second, Get as much informaiton as possible. NCI and NCCN have wonderful information about recommended treatment protocols. NCCN has a "decision tree" for treatment (I think you to log in as a professional to get to it, but I did with no problems) that gave me ideas and options and something to show my doctor and talk about.
Do what you feel is best for you. We can only control what is happening to us now; we can't expect or plan for a future recurrence. If it comes back, we deal with it then. If it doesn't, then we're blessed with a long and happy life. I wish you all much success in whatever direction this journey takes you.
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Hi, I am Bela and my oncoscore was 23, I decided to do chemo TC but forst TC gave me colon problem now it is AC. done with two chemo 2 more left.
Thanks
Bela
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Oh sjensen29 .. you ask what sounds like a simple question. But .... many, many foods as well as their packaging contain estrogens. That is why we have become such an estrogen dominated society ... hence girls having their periods earlier and earlier. Also, check out all the man-boobs out there on little boys as well as grown men. That is from all the estrogens in our environment and foods (except for the heavy pot smokers ... that grows boobs too on men)
I don't have a list for you. You will need to spend hours and hours and hours on google. You will need to google estrogens in dairy and plastics. Even the linings of popcorn bags are filled with estrogens. Most lotions are ... that is why my lotion now is cold pressed, non refined organic coconut oil. The list goes on and on. Dairy is high. The cows are kept artificially pregnant with hormones. I only eat grass fed beef and avoid all the lot fed beef that are fed genetically modified corn and high amounts of antibiotics which for some reason causes them to gain weight.
One place to start is by reading the Natural Girls thread from the beginning. I learned a lot there.
In the end it is a personal choice after doing the research. But, basically I avoid all dairy and use almond milk instead. I avoid all soy -- estrogenic (except supposedly for those born and raised in countries where it is a staple from birth). I avoid plastics and never, ever microwave in it. I try to avoid most packaged foods and any products containing parabens, hydrogenized, partially hydrogenized and any words I can';t pronounce. I carry my own soy free salad dressings to restaurants. I avoid pasteurized drinks and foods because pasteurization kills everything in the product so it no longer has the nutrients the natural orange or whatever had in it before.
sjensen29 .. I see you are new here...sorry you had to join our club ... I was lucky that when I started reading here in April 2009, there were so many, many women and a guy named Timothy who were also researching and researching and sharing their links and goodle searches with us all. I was mostly on Natural Girls back then but there were other threads also, I just don't remember which other ones are ones I should refer you to.
I decided not to do Tamox because the 25 yr old study they told me about when they said it would reduce my recurrence rate by 50% really only said that Tamox raised the number of women who did not get a recurrence from 1 in 100 to 2 in 100. I look at that as 2% not 50%.
I also had an Oncotype Score of 0.
I decided to find out what my estrogens were since I was post menopausal and they were not fluctuating throughout the month. Then I decided to avoid the side effects of drugs and try to lower my estrogen on my own ,,, which in my case has worked. I found an expert in bio identical hormones in a city just 3 hours from me.
I wish I had a set answer for you, but it is a personal choice after a ton of research. I have researched and researched enough to write a book and am still researching and changing my diet choices.
Good Luck in your search for answers.
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