NEW Oncotype Dx Roll Call Thread
Comments
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Mina_Bird, sounds like you are doing the right thing by getting a second opinion. It is a very difficult decision and getting another perspective is helpful.
I made my decision a week ago and it was one of the most difficult decisions of my life. I sought a 3rd opinion because the 2 other docs had completely opposite opinions. In the end I chose not to do chemo because the docs felt that the toxicity outweighed the benefit. My tumor was sub-centimeter to begin with and turned out to be even smaller than they originally thought. I didn't have any node involvement. I have been taking tamoxifen for a week now and will do the full 5 years.
Best of luck to you. You will find your answer.
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Mina_Bird - I finished 6 rounds of CMF about 5 weeks ago. It is not as harsh as some of the other chemos. I lost about 20% of my hair and it fell out evenly so it looked normal all through treatments. I found the worst side effect to be the constipation. Start using stool softner and senecot tablets a couple of days before each treatment. Also try to eat prunes, figs and lots of leafy greens and drink plenty of water. If you can walk past a bathroom and not have to use it - you're not drinking enough water. I was able to follow my usual routine throughout the treatments with little problem. Good luck to you. I hope you do well on your treatments and afterwards as well.
Kathy
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who ordered oncotype for you- the breast surgeon or oncologist?
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My breast surgeon ordered it but either can order.
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My oncologist ordered it, but yes, surgeon can too. My results took a few weeks, but he said that is typical.
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Hi amazing women!
I have been following this thread since my doctor decided to run the Onco test a few weeks ago. I haven't posted yet because my results were very troubling. My score came in at 71.! ! ! I had been thinking the whole week before the test that it was going to be a 17, but I guess my mind transposed the numbers because YES it was a 71. Now my doctor did not even go over the test with me because the result troubled her too and now she is re-running the test and my original lab test run at our hospital. Here's the discrepancy... on my original tumor biopsy at my hospital the path came back ER+ at 91%, PR-, Her2-... BUT on the Onco test it came back VERY negative on ALL 3. My dr. said she had never seen that since she started ordering the Onco test. So as wait the new results we have decided to go on with Chemo. My DH and I had pretty much decided to move forward with the chemo unless the onco number was VERY low since I am only 44 and don't want to give these nasty cancer cells any chance to regroup! I start at 2 pm with 4 treatments, 3 weeks apart on Taxotere and Cytoxan. Hopefully at my dr. appt before the chemo she will have some answers for me....
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Arubajan, I'm glad the doc is redoing the test. is it high because of the grade 3? I had an onc consult yesterday and she didn't even want to order oncotype- she said "it's not necessary". My insurance will cover it and if it gives me peace of mind, I think it's in order. She agreed to order it.
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Arubajan, glad to hear she is re-running the test. It's odd that on one test the ER came up so highly positive and the ONC test showed negative. I feel for you and hope that the information gets straightened out. In the meantime, best of luck to you with the chemo. FYI, there is a Taxotere/Cytoxan string on this site if you are interested. Wishing you all the best!
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Hi all. Well, after much debate and angst, I've made the final decision to do chemo, so feel free to add me.
Here are my stats: 39 years old, lumpectomy + reexcision, TCx4, rads, tamoxifen, oncotype score 13/8%.
Hardest decision of my life! And definitely based on other factors along with the oncotype score.
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Hey all,
Tests are redone.... my 71 is probably right... the tumor 're-stain' at the hospital came back at 37% positive for ER (instead of previous 91%) and after my doc had dinner with the Oncotype people -- (she took my file to dinner!) they discussed the Onco result of 4% ER+. At this time, we are planning to do Tamoxifen after chemo and rads.... the number still sucks, but I am okay with it....
Hugs to all!
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JennyB, glad to hear you made a decision. I struggled also and I feel for you, one of the most difficult decisions of our lives. Wishing you all the best.
Jan, sorry it wasn't better news but good to hear they re-examined all the data to be sure. It's great your doc talked directly with the oncotype people. Wishing you warm hugs and hoping your treatments go well.
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Jan, sorry that it came back the way it did. Your attitude is great. I am having my pathology re-read too. The second oncologist found some inconsistancies in the reading of the HER2 FISH so he wants the her2 redone and the path slides re-read. I may not like the new results but it is what it is. I should have oncotype results by end of next week too. I am thinking Oncotype is like an impartial safety net- like having another pair of eyes check over the pathology and give an objective number.
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Jan, did they say why it came back ao high at 71? my score was 33, and I am barely ER+ 6.5% and PR - 5.0% HER2 - I am thinking I am almost triple negative that is why? I wish the Oncotype would give us more info if it comes in high,
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Today I received my Oncotype score: 24 with 16% chance of recurrence. I'm scheduled for re-excision lumpectomy for 1mm DCIS margin on 5/20. This is what I know: I have to do 6 weeks rads with a boost and Arimidex. Since i fall into the intermediate category as the BS predicted, is it really a crap shoot as to the benefit of chemo? I am 55 yrs young and in good health. I will have another meeting with the oncologist the week after surgery but ultimately it is our decision. What should I do????? I'm so scared
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Mari--Maybe the quesiton you need to answer is whether doing chemo would make you less scared, or at least more confident that you'd done all you could. This argument seems to persuade many to do chemo.
SInce you have IDC, grade 3, chemo might benefit you more than some others, but you are also HER2-, which tends to be less responsive to chemo, and you have a small stage 1 tumor. Some people in your situation compromise by choosing a less harsh chemo regimen like CMF.
Ask your oncologist how much you stand to gain by doing chemo in addition to hormonal, and weigh that against the percentage of risk involved. I don't know if this will help you decide, but expressing outcomes in percentages sometimes clarifies the issue.
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Hi!
DCarpenter ~ I am sorry I didn't get back with you but I am waiting to talk more to my oncologist on May 17. We, of course, with the high score went forward with chemo. I suspect my high score may be due to the fact, like you also suspect, that I am nearly triple negative. I will also get the result of my BRCA gene test on the 17th and I am wondering if I have that gene if that may have any effect on the results. So far my 71 is the highest of any results I have heard...
Mari-12 ~ I agree with Seabee and I am here to tell you though my tumor was a bit larger than yours my diagnosis is similar and I am 44 that my husband and I had decided to do chemo unless the Onco number was extremely low (like 8 or below) (not that we ended up having to make that decision because my number was a 71!) but I really wanted to feel as if I had done everything I could to kill these cancer cells. Currently I am undergoing 4 rounds, 3 weeks apart of Taxotere and Cytoxan. I must also tell you that it is not as bad as I thought! Of course the first week was rough, but other than that I have been feeling pretty good. Even able to work some days!
The toughest part for me, was dealing with the loss of my hair but I have gained some perspective on that I am losing my hair, not my leg and gaining my life! 0 -
Seabee and Arubajan05 - Thank you for your very sensible advice!!! I'm sure once I get all my facts and settle down, the answer will come. You are right in not relying on the onco score alone. I must keep in mind the grade and the HER2-
Jan my heart goes out to you with all you have been going through. It seems you are surrounded by wonderful family and friends and you have an attitude this is so clearly positive! You are doing everything that I would do too!!! Keep smiling you are beautiful
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Hello Mari,
My score was 21, 13 % chance of recurrence. With an intermediate score of 21 and my age (33), I opted for chemo.
Doing chemo seemed like it was the safest thing to do, even if it only raised my survival rate by not much. Knowing I did everything I could to reduce my rate of recurrence makes me feel better. Personnally, if I were grade 3 and had a score of 24, I would do chemo. But this is a very personal decision.
I did Cytoxan and Taxotere and as arubajan05 mentioned in an earlier post, it was not that bad, except for the hairloss of course!
I know it is not easy decision to make; Good luck with everything and keep us informed!
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Oncotype score 25, 16% chance distant recurrence within 10 years. It's the 10 years part that bugs me--both my mother and father are long lived, and I'd been planning for 40 more years.
Oncologist proposing 4 X TC. I'll most likely go for it. Sometimes I marvel at each bump downward taking me from what I thought was "the easy cancer" DCIS, to this.
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Hi Mari12
My onco score was also 24 with a grade 3 1 cm tumor. I am 48 years young and post menaupause. It took me a while to come to terms with any type of chemo but the recommendations from few oncologists and my radiologist was to do the chemo. I also had a number of conversation with my husband and sister and decided to do the CMF protocol. 8x every three weeks on a Monday. TC was aslo recommended but that particular doctor also wanted me in a study because of the intermediate grade where you are ramdomized. I am at peace with the CMF decision, I've had some side effects and am working with the doctors to balance a few different meds; but the side effects go away and by the time the weekend rolls along and all side effects are forgotten. I am still working full time I take off the day of treatment and go to work late the following day.
Nothing is guaranteed; doing the chemo doesn't mean we are cancer free forever and not doing the chemo doesn't mean it will come back. This is a very personal decision and one only you will know if it is right for you or not. For me, I am at peace with my decision I think in a way just making a decision helped me feel at peace. All the best to you.... Barbara
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i am struggling with whether to do chemo or not. My oncotype score was a 20, DCIS stage 1 cancer, clear lymph nodes. i have had two lumpectomies without gaining clear margins, so i am having bi lateral mastectomy next week. I am chosing to do both to take away the chance of going through this again. The only argument the oncologists seems to have for chemo is that I am young (40 years old) and can take the treatments well. Since I was a 20 on the oncotype - just in the gray area, she is unsure of what benefit chemo would have. Any advice from others?
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Hello shawgirl1: I had an oncotype score of 21; I did chemo because I was in the "gray area" and because of my age (33).
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shawgirl........my question would be what is the chemo for? My oncologist recommended it so she and I quote "wouldn't get sued in a few years for not recommending it".
You will have no or almost no breast tissue remaining and you had DCIS which can become cancer but is not yet.
I would ask if the oncologist can guarantee that chemo would absolutely positively kill a cancer cell that got away from a not really cancer DCIS and was undetected by the lymph nodes. It is the job of the lymph nodes to catch it.
You will need to make your decision based on....what do you think your chances are that a cell got away undetected and whether you think chemo would kill it if it is lurking somewhere. Can a DCIS cell become cancer if it is not in breast tissue??? Your body has many hurdles a "deformed" cell must go through to live. If you have enough progesterone "bad" cells are supposed to succumb to cell apoptosis (cell death). I have almost no progesterone and am trying like crazy to get up to normal by using bio identical progesterone. Have you read Dr. Lee's book "What you doctor may not tell you about breast cancer"?
Please just take a breath and take your time and do your research. There is no one right way, unfortunately. You need to be sure of your decision. Just because you are young and can take it is not enough of a reason by itself to take a poison that will have life long effects. Many people do choose it for many different reasons. Some want a big percentage benefit. Some choose it even if it only offers a 1 or 2% benefit. DCIS is not the same as IDC or ILB and you had no node involvement. I didn't even know they recommended chemo for DCIS. When I read the National Comprehensive Cancer Network ( NCCN) guidelines that the docs read....it did not recommend chemo for DCIS. They have a whole grid with guidelines for each type of breast cancer.
Sounds like you have time to do some serious research. You still have a major surgery coming up and you need to heal from that.
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thank you for your advice. I realize that i should add I have DCIS that had turned into IDC. The 2nd lumpectomy still had signs of both DCIS nad IDC on the margins. I will research the NCCN you noted becuase I am on the fence if Chemo is needed or not. I appreciate any help in making this decision.
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Hello girls, Ive been reading all your posts and im a bit worried, as well as so informed! i see my Onocolgist tomorrow morning... My surgeon, who is an Oncology surgeon( but i will see another Ono from her office beings she is doing mostly surgeory these days) she said they dont always use the oncotype score cause sometimes it does not matter? im worried they wont do it? my surgeon told me if i choose to do treatment my chances are 7% in 10 years of it coming back, if i choose not to do treatment my chances are 17% in 10 years of it returning. ive learned a lot so far by getting my own records after each step, and reading so much on this forumn. it has really made me think about my choices, im ER+/PR+ both say 90% posiive, my HER2 says 1+/negitive? i dont know what the 1+ means? my Ki67 is 18%positive? What does all that mean??Im so unsure of what to do and i have not even seen ONC yet. do they give you time to think? my mastectomy was on May 11.There is so much to think about. im going crazy! and im scared of what i will hear... any thoughts and advice? please it would help me a lot.
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Hi Cheyenna! Welcome to the club you never thought you'd belong to... I know there are so many terms and choices coming at you, I think it is really overwhelming. I was diagnosed end of Feb. and I tell people all the time that I feel like I am taking a college course in bc.! I am shocked that they gave you your score before you saw your onc so that you could discuss with her. At any rate, I think that there are 2 things that you need to be comfortable with before you make any decisions. 1) you should have an onc that you feel extremely comfortable with, that you can ask any questions you may have (I take my questions that I think of betw appts in to my doc in a notebook each time), and that you trust for their advice and treatment plan; 2) also you should try as much as possible to educate yourself on your personal diagnosis and the treatments you will be going through BEFORE you commit to the plan. I know that at first I felt that I was being led "blindly" by my doctor but quickly realized that for my own peace of mind I had to know what was happening (or going to be happening to me) in detail and why. As far as the details regarding your score... it sounds like it came back relatively low which is GREAT news. I am suspecting the reason the surgeon said they might not use the score is maybe your age? (I don't know how old you are, but you look young in your photo.
Sometimes they recommend chemo if you are young to get in there and use every weapon with your first diagnosis. If that is the case, you will have some decisions to make. And every woman has to make the right decision for herself. You will know what is right for you, given a little more time, some advice from your onc and listening to your gut. The women on this website are great and have provided tons of support and insight for me over the last 3 months. It sure helps to know you're not alone.... Hugs! 0 -
Cheyenna....they say it takes 10 yrs for cancer to form.....so a few weeks for you to do whatever research you need to do to be comfortable with your decision shouldn't matter
You are only a month out from diagnosis. You have no node involvement. RESEARCH until your brain hurts. You need to be sure you are comfortable with what you choose. Poisons have life altering results....I know if I had done the chemo my oncologist strongly recommended instead of following my gut on the OncotypeDX....I would have died of anger. My oncologist is more concerned about whether she will be sued for not recommending something than treating me as an individual. I so wish I had an oncologist I could trust with my life.....hopefully you do.
There is no one right answer. Unfortunately. It would be easier if there were.
I don't know about you......but I had to do my own research....there was no one here in my town for me. Google is your friend. One of my docs actually wants me to send him some links re iodine. Do the research,. Think it through. Some of the sites actually think I am a doc or a nurse...hahahaha....but I got the info I needed to make my decisions.
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arubajan05, luna5, thank you, yes i have been doing research, im goning crazy!! im not sure if im young for this, im 44. I dont know where she came up with the 17% if no test was done, she did say because of the size of the tumor. 2.6cm. i think the type of bc plays a roll as well? but today i see the Oncologist and i am going to ask for the test. if anything it should show me some details? i feel im in that gray area!!! i have heard this oncoligist is very open and listens to what we will say so im hoping for that... i feel like today is D- day for me... lol0
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Cheyenna,
I felt the same way when first diagnosed. I also had to encourage the onc to have the Oncotype done. I had 2.2 cm IDC. Good luck! We are all here for you!
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Wow. My score was a 65...not very good. This is the first time I've seen it in comparison to other people's scores.
Here's my info: Triple Negative, LMP, SNB, HSTY (10 years prior!), RAD, A/C+T.
My surgeon didn't seem very aware of triple negative, and had ordered this test for me before I met with the oncologist, who gave me the news. Usually they don't order this test if you're triple negative.
Re-edited: Saw my oncotype paperwork last night and realized that it was actually a 67, not 65.
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