Oncotype DX score of 20 received today
Comments
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Thanks so much, Pam. My onc said 12 weeks, so I was just curious.
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I decided no chemo. Oncotype score of 18. It is a personal decision and a hard one. Oncologist numbers stated that with chemo my recurrence would be decreased only by 3%. I had a bilateral mastectomy and will take Arimidex for 5 years. I felt this was the right decision. At age 18, I had Hodgkin's Disease. 9 1/2 weeks of radiation then, cause of breast cancer now. Do your research, ask questions.....
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Hi samiam40,
My Onco told me that he didn't feel that I needed to do chemo. He said that chemo might reduce my risk factor by 2%. He did say that if I wanted to do it that he would give it to me. He said that I need to be able to sleep at night. He gave me examples of woman with Oncotypes of 12 and 14 getting chemo b/c they wanted it and others with scores as high as 30 who refused. I told him that I would think about it and get back with him. I'm planning to call him tomorrow and tell him that I've decided to forego it. I don't feel that the benefit is worth the long term risks that chemo bring. It's so hard to make decisions like this. I know that we all want to make the right choices for overall health and well being.
Lisa
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Mary, i'm awaiting my score from the Oncotype DX test (should get the results this Friday). I'm not sure about the scoring system. Maybe you can enlighten me. Thanks. Donna
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I am 7 weeks post op and go to the Med Onc tomorrow to find out what my Oncotyp DX score is. I also had a PET scan on Monday and will get those results also. I am hoping for the best and then will be able to start my radiation. I was originally told that I would need to be doing my radiation between 6 and 8 weeks, but even if I can get an appointment next week with the Rad Onc, it would be another two weeks before I could start the radiation.
Juannelle
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Donna - The Oncotype test scores are as follows - 0 to 17 is the low risk range, 18 to 31 is the inntermediate risk range, and anything higher than that is the high risk area. The "risk" they are evaluating is the risk of the cancer recurring. (I think my numbers are correct - I may be one or two numbers off in each range. You can check this all out on the oncotype web site.) You will get a score that falls somewhere in that range, and hopefully it will be a nice low number. You will also find out your "average rate of distant recurrence." My recurrence score is 20, and my average rate of distant recurrence is 13%. The way my onc explains it, if we put 100 women in a room with my exact same cancer situation, 13 will have a recurrence within 10 years. Hope this helps. You and Juanelle are in my prayers. Keep us posted! XO, Mary
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Mary, thanks for enlightening me. With your score, may I ask what you decided to do? Juanelle-I wish you the best as well. Donna
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Hello all, just a brief not about timing for treatments. The most common sequence is surgery, chemo then rads, as you know. I had an infection immediately post op, so couldn't have started chemo quickly. Therefore, I started immediately on an AI. Now I am doing chemo, I may have to have an axilla strip, then I'll do rads.
None of this will in reality amount to "a delay" because of course, each one of the treeatments is hitting any cancer that might be lurking about.
I discussed the above in detail last Monday withy my tads onc, so if any of you are in a not dissimilar position, you have no need to worry.
Best to all -
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Cheryl, what did you decide to do vis a vis chemo with your score of 20? I just found out today that I have a 21 score so we're very close. thanks, Donna
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Just to share. I had a score of 20.5. I figured it meant chemo for me. My oncologist took the 100 women in a room illustration one step farther. He said that if those 100 women in my exact situation all decided to take chemo, only 3 or 4 would be helped by it. At his urging, I went without it. Scary, but I trust him.
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Well, I had my Med Onc appointment today to find out my Oncotype DX score. It is 25. Not at all what I wanted to hear. I did manage to keep the tears a bay while I was with the doctor. However, as I was waiting for my flu shot, a woman came out of the chemo area, with her little base ball cap and bald head and I couldn't hold back any more. I just broke down and cried like a baby. Luckily my cousin was with me and she held me close and calmed me down.
My Onc thinks that it would be worth it to do chemo. These decisions are so hard, I hate this. Everything has gone so well. Early detection, small tumor, PET scan didn't show anything else in my body, surgery went well, ER positive, so I am trying to be in the glass half full area, instead of the glass half empty.
It was a DQ blizzard day. I will do my research and make the best decision for me. There is also a clinical study she wants me to look at. I am going to talk to them, but am not sure I will do it. It is a flip of a coin as to whether you get chemo or not. If I truly want chemo, then I will not do the study.
Decisions, decisions, decisions. The gift that keeps on giving.
Juannelle
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Donna - I decided to do chemo. My family history includes a lot of cancer. I also had melanoma at age 19. We just could not be sure how my cancer would act, so I went in with guns blazing.
Juanelle - Thinking about you and sending love. Give this whole thing some time - let it simmer. The answer WILL come.
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Thanks MAGOB. I have come to a standstill on what I need to do. I am really leaning toward chemo, but there are many things to consider.
When I got home from the doctor, I went and picked up my grandson, he is 5, and kept him for a couple of hours. I needed something to take my mind off of bc. He is the ticket. When he is around he is the center of the universe.
What ever decision that I make, I just don't want to look back in 5 years and fear that I made the wrong one. It is like the doctor said today, if it comes back, it probably will not be in the breast and it will be harder to treat. I am almost in the dead center of the chart, so it makes it that much harder.
Juannelle
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HI One-L,
I am sorry your oncotype score has created this dilemma for you. Mine is actually higher, 26, but my three doctors all said no to chemo. I am 99% ER+ so Arimidex was highly recommended and I am 62 yrs old which probably influenced their decisions. Sometimes it is a good thing to be getting old! I am still nervous for skipping chemo and relieved at the same time... weird, huh?
Good luck with your decision. You will find the right answer for yourself.
Pam
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Hi Pam,
I have agonized over this all day. It has been very emotional for me. Almost as bad as when I was first told of my dx. All I can say is that I was so sure that I would not do chemo and that was very important to me. I guess now it is really really real and I have to face the facts. Every thing had been going so well.
I don't want to look back and think that I have made the wrong decision, it is so scary. I have just about made the decision that I will do chemo. I could go get a second opinion, but I will still have to make the decision. So that will not go away. I really like my Med Onc and I think she is giving me the advice that I need, but I know it is up to me.
Juannelle
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Dear Juanelle,
Everyone I read says they are at peace once they make up their mind to do chemo. You are as strong as they are and will make it through whatever lies ahead. Hugs!
Pam
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Pam, thanks for your kind words. I know I am strong and I do think I will be at peace when I have made the final decision.
I just don't like making all the hard decisions. But they are there for me to consider and do the best I can.
Juannelle
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Pam: You said up above that you are 99% ER+. Where did you find that score?
My biopsy report says ER >90% nuclear staining. My post-lumpectomy pathology report says "the tumor is estrogen receptor strongly positive, progesterone receptor strongly positive and Her2/neu negative." My Oncotype DX report shows ER Score = 8.7, PR Score = 7.9. These are not represented as percentages but judging by the position of my score on the scale, it doesn't look strongly positive.
I'm guessing a strong ER score would be a good thing as Tamoxifen would then be more effective.
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Hi Mary,
Thank goodness you asked me this question! I went to get my path reports and could not find them! I had never put them back from last time I took them to a doctor with me so had to search all over to find them! Thank you for alerting me to their misplacement.
Anyway...
My surgeon gave me a copy of my final pathology report. The company is AmeriPath. After the identifying stuff on the top... name, date, hospital, doctor, specimen ID, date collected, date received, date reported.. then there are two divisions: BREAST PROGNOSTIC PANEL REPORT and HER-2 FISH ANALYSIS REPORT.
Under the first heading is "Clinical Information" which details which breast, etc.
Also under that heading is "Results and Interpretation" . Here is where it says:
ER....: Positive 99%
PR..... Positive 28%
HER-2 FISH has been ordered and will be added to this report when completed. (Then that shows up down at the bottom of the page.)
Reference range ER,PR: <2% is negative; 2-4% is Weakly positive; >4% is Positive
It must be that different labs express the results in different terms. Perhaps you could call the lab and ask them to interpret the numbers for you? I have seen other members here quote their ER in the form yours is so I think it is just an alternate way of saying the same thing. My report does not show a scale drawing.
My doctors have said being 99% ER+ is very good. I am older (62) so on Arimidex but am sure the same thinking applies to tamoxifen. Have you had that test that measures if you are a good metabolizer of tamoxifen?
I hope this helps you. There is so much to figure out with this and this site is a blessing to all of us.
Pam
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HI Again Mary,
I was leafing through my paperwork and came across my OncotypeDX report. On the third page teh ER/PR info is expressed in the way yours is. And there are graphs.
So here my ER is 9.8 Positive, PR is 5.6 positive. It does not look as good expressed that way.
Pam
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I was originally diagnosed as a triple negative, but pushed onc to send in for oncotype. Turns out I am ER and PR+. Received a score a 20 and onc wants to do chemo. Went for 2nd opinion from dr. at nci designated hosp and he doesn't feel I need chemo at all due to the size (.8mm), grade 1, and 75% or greater tubular features. I think I am going to choose no chemo as he said the benefit would only be 1%. Anybody else get the same feedback?
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Hi, question - what does greater than 75% tubular features mean? It seems that is a good thing, but I was diagnosed as IDC NOS. Why not pure tubular? Does anybody know?
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Hi, Mary. I had my 1st treatment last Wednesday. Onco type was 17. How are you feeling? I had blood work today and my white cell count is down to 300.
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Hi Cheryl,
I am 9 years out from diagnosis and treatment. They did not do Oncotype on me at that time. However, I was 44 yrs. old, Stage I, IDC, no nodes involved, ER+, PR-, HER-, 1.4 cm tumor. I also chose mastectomy and a prophylactic mastectomy since mammograms did not detect my malignancy.I received 3 opinions and they all said the same thing (chemo, tamoxifen). I based my decision on if my cancer recurs, will I regret not doing the recommended treatments? In my mind I felt like I needed to do everything humanly possible to prevent recurrence. I armed myself with tons of information, asked the drs. lots of questions, and even took a recorder with me to drs appts. If you aren't completely satisfied with your oncologist, find another one (if insurance allows it). After Tamoxifen, I had an oophorectomy to put me completely in menopause so that I could take Femara. Took that for 2 years. To repeat what others said, it is what you are comfortable with. I have no regrets. Yes, I do have chemo brain and don't feel that I have the energy that I should, but that is better than having a recurrence. I know that follow-up will always be forever. Good luck with everything!
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I am newly diagnosed and awaiting results of both the HER2 and the Oncotype (which hasn't arrived at the lab yet). The initial HER2 was "borderline," so a FISH test was ordered and results should be here Friday. This certainly is an anxious time. Haven't seen an oncologist yet.
I am 62 and had my yearly mammogram on 9/25/09. Had biopsy on 9/28/09 and partial mastectomy (lumpectomy) on 10/06/09. Doing fairly well physically, but emotional roller-coaster.
I read some of the posts of the really young women and it made me realize how very blessed I am.
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Hi Watercolor!
The waiting for test results is the worst part of this. We all go through it. I don't like suspense at all. I learned here that many doctors want their patient to come in the discuss test results. To me that just extends the torture. I got my doctors to agree to allow their staff to read the results over the phone as soon as they get them. Sometimes I still have to have a "sit-down" but at least if the news is bad I am prepared and don't have a breakdown in the office. Also the heads-up allows me time to do my research and compile a list of questions that would never occur to me except for the wonderful women in this forum.
The Oncotype can take 3-4 weeks. I already had seen my medical oncologist and developed a treatment plan when the results came back. Even though my risk was in the intermediate zone my 3 drs did not recommend chemo so my plan went forward. Actually, my OncotypeDX report stated that I would not benefit from chemo so I was glad to not have to do it. Nervous to skip to though.
I am now 6+ months post DX and still riding the emotional roller coaster. Every follow up raises a new question and subsequently a new fear that has to be dealt with. This forum is such a wonderful outlet for me. I could not burden my family and friends with my worries and obsession about what is going to happen next! I can't share my deep dark fears with my DH, he is a bigger worry-wart than I am! And my grown children only want to hear good things. I can't blame them... that's all I want too!
Reading these threads surely does help keep things in perspective. My heart breaks for the young women in aggressive treatment with jobs and young children. I think I will try harder not to complain:)
Nice to meet you, sorry it is under these circumstances.
Pam
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Hi All
I had to weigh in here. My Oncotype score was 26 -- in the upper half of the "intermediate risk" category. The report also says I'm ER+ (8.5), PR -, HER2- I had no lymph node involvement.
My oncologist was recommending chemo even before the Oncotype was done. His reasoning involved the size of my tumor, its location, and my age -- (he calls 51 young!)
When I received the score and did some research, I decided to do the chemo. I didn't want to take the gamble on a recurrance -- my cancer did not show up on a rountine mammogram by the way. I have also been reading a lot about how tumors develop. Micro-tumors can be present for years before become malignant. And, I wasn't necessarily an example of clean and healthy living -- I have a history of smoking and also social alcohol. (did you know that more than 4 oz of alcohol a week doubles your risk of breast cancer?)
So, it's a personal decision for all of us. If my score had been in the low 20s, I think the decision would have been more difficult.
The young women with children, and/or a job with no flexibility and those without good support -- they all have my utmost respect. I'm very lucky to be able to take this treatment while working from home and am surrounded by support. I know that's not the case of many many people.
My second of six chemo treatments was yesterday. Not quite as easy as the first, but, here I am.
Love and strength to everyone
Lottie
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Mine was 38 before any treatment. After 3 rounds of chemo, it went down to 18, Had surgery, will start another 3 rounds of chemo on 10/28. Chemo is hard but it's working. Hugs to everyone.
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Thank you for the reply. I like the idea of getting results over phone. Mostly that is what has happened so far. I am trying to get in to see a medical oncologist and so far I have been told that they need to have my oncotype and HER2 back before I can set an appt. I am pushing for an appt before that and was supposed to receive a call today...didn't happen. I'll call them if no word by noon tomorrow.
Also I was trying to stay relaxed this evening when the company that does the Oncotyping called to say they weren't sure if my insurance was going to pay for it. Cost is over $3000. Now how can you relax when people call in evening!? I should have asked him if he was a Dodger fan and note that they were losing. I realize California is two hrs behind us, but he might have called earlier so that I could call my insurance to clarify. We have really good insurance and I will be very surprised if they don't pay.
Glad you didn't have to do chemo. Do you know if age factored in? One of the reasons I wrote to you is that I noted that we are the same age. Chemo is one of my greatest fears. Praying for all good results. Radiation does not scare me so much due to local rather than systemic effect.
It really does feel good to air frustration.
Thanks for listening.
Kay
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Dear Watercolor,
I am sure age factored in to the recommendation for no chemo. That alone made me nervous because I used to think of myself as younger than real age. Also the high ER+ number made me a good candidate for getting maximum benefit from an AI like Arimidex. Seems like there is a subtle shift toward hormonals away from mass chemoization. Finally, although my Oncoytpe score fell into the mid-high intermediate zone the second page of their report had a graph that showed I would not benefit from chemo. I don't know why as it was presented without discussion. Also when my DR plugged my stats into the on line program he uses I got about a 2-4% benefit from chemo so did not seem worth the possible se's. Radiation, just as scary, gave me a 30-40% increase in non-recurrance so that was a no-brainer.
I don't want to alarm you but none of this is without danger. Radiation has many side effects that are serious. Damage to heart and vessels (long term), lung damage, even can cause its own cancer. Those used to be a greater danger, newer programs are able to avoid radiation to vital organs better. Ask if your facility uses modern techniques like image guided or intensity modulated with "gating" which is a breathing technique to move the breast tissue away from lung and heart. Less risk if your cancer is on the right side and lateral in either breast. I did not have to go to a major cancer center to have access to state of the art care but I do live in a medically competitive market. My rad oncologist made a point of discussing all the risks and scared me to death but I would have been upset if he had not told me about them in advance... like he did not take it seriously enough.
About oncotype: did they discuss their program of reduced cost to no cost based on income? And the fact they will work hard to collect from your insurance company. In my case, they had to appeal twice but finally got full benefit. I have BC/BS - kind of run of the mill coverage. The benefit to your insurance company is that if your number comes back "good' the insurance company can be saved the cost of chemo which is much higher! I think it is becoming pretty common for it to be covered. BTW, Medicare now covers it so you might make that point to your ins. co.
The waiting is the worst. I am in limbo right now over a lung nodule that showed up on routine screening. Off to see the doctor in a few minutes.
I won't say things get easier but it does seem to become less distressing. Guess we just learn to accept the suspense. Or at least expect it
Hugs,
Pam
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