worried over onco score

My understanding from my MO was that not only does it tell you how likely your cancer will recur within 10 years, providing you take tamox for 5 years, but how likely you are to benefit from receiveing chemo.  They know that they are now giving chemo to a lot of women who will have little benefit from it.  I think the test is to hopefully figure out who really needs it.

At 18 - 11% chance of recurrence.  Only went down 2% if I did chemo.  Chemo was no guarantee that I won't get distant recur.  They say chemo is doable, but once they think you probably don't need it they are very clear about long term SEs and not just short term SEs  Like 1 in 500 people die from chemo.  My MO would have used cut off of 25, because I was 46 at dx, but not sure what he would have said if I was in my 30s.

I am doing my rads for local recur.  Taking tamox to help prevent distant recur. Highly ER+ and not looking back.  Even if TailorX says something else, you just have to live with the decision you made with the info you have.  Can't change your mind.

Hey ladies,

I am definintely young for BC as I got diagnosed one month ago today. I had a UMX with SNB on 1/30. I came back stage 1, 1.4 cm, grade 11, her2 -, and ER/PR + 100% both. I had no lymph node involvement. I just got my oncotype back over the phone from the nurse and it was 14. My MO and the nurse talked briefly so I would have an answer for the weekend. The nurse said while she can not give me a DEFINITIVE answer because my MO hasn't looked over everything, she said it looked promising and my MO doesn't think I will need chemo. I guess I am curious if there is anyone out there with similiar cases? I will do anything i NEED to in order to live, however with being so young, I am fearful of jumping into chemo if I don't need to because I would LOVE to have children after my course of Tamoxifen.

 Another question, why do those of you say you weren't able to tolerate Tamoxifen? I haven't met with my MO, I meet with him Monday. We discussed it briefly before surgery, but was weeks ago now and have so much more information. Can anyone give me some insight?? 

Hi Ladies, I just joined the community today, 2/11/12.  I was diagnosed 1/17 and had a lumpectomy on 1/24.  Stage 1 IDC, tumor was 1.5 cm, grade 3, clear margins.  Micro metastisis in SN, .25mm.  4 other nodes removed, all negative.  Am waiting for onco score; meet with Oncologist on 2/22.  Appreciate reading all of the posts...makes me feel better to know I'm not alone in struggling with my decision once I get my score.  As so many women say, I want to do "everything humanly possible" to fight but I am so scared about the side effects of chemo.  One of my biggest fears is "chemo brain"...I'm 54 and already am forgetful.  Has anyone had this side effect?  I hear that you lose short term memory?

My score was 25..a16% recurrence rate. My cancer was small...
0.6..i decided to do chemo for several reasons...one being my age.
I was 44 (one week before my 45th bday) I wanted to fight and give it my
All. I did 4 rounds of T&C. It was doable for me. I worked f.t.. this
is a tough decision. Good luck to you all. Sending healing vibes.

sjensen

can you get a second opinion?  that can sometime help. There are also folks around who had babies after chemo or some even during chemo.... But I think before you even decide that, talking to another MO and also some fertility experts might help you out.

best of luck-we all know what a hard decision this is...

Hi Ladies  ---I just received my Onco score today over the telephone--its 27.  I did not get any other info from the front office lady and will meet with my M.O. tomorrow.  I am in a daze.  I am 47.  I am not sure what this score will mean for me but reading all of your posts makes me think they might be recommending chemo.  I kind of feel like I was more afraid of chemo than anything else.  I have to say what really helps me put into perspective everything is so many of your comments.  I know I can do this now thanks to your support and comments.  I really needed to read these today.  I am so glad they gave me the info over the phone today.  I am going with my husband tomorrow to the appointment and don't want to freak out in front of him.  Poor guy he is very worried.  We have been married for 28 years, dated all thru out high school, and now are blessed with a little girl 6 years old.  How did this freakin happen to me?  I beat myself up everyday asking what could I had done to prevent this.  I am absolutely the only person in my gigantic family with BC. 

Anyways thanks ladies, I appreciate your supportive comments.  I can do this.

I can relate to a few of you. I was diagnosed with DCIS and IDS on 1/6/12 after mammogram and ultrasound on 12/27 (ultrasound b/c I have extremely dense breast tissue and mammo showed nothing even though I had felt this small marble in me since Aug 2010). Had core biopsy on 12/29 which was seriously the worst part of all treatments so far (OMG the pain from that). The biospy report showed ER+ and PR+ both very high at over 90%. Her2 test was not done and no one knows why. Biopsy was grade 2 for tumor then after the lumpectomy on 1/20/12 the final path report put it up to grade 3. There is no vascular involvement. Two sentinel nodes were removed, both negative. The margins were "highly clear" all by "at least 1cm" which they said was great. I had the twice a day for 5 days internal radiation done by the SAVI implant and finished that 2/9/12 (I take it back, having the SAVI put in and taken out was the worst pain of all the treatments, core biopsy goes to 2nd place LOL!). 

 I finally met with the medical oncologist yesterday 2/15/12 and he asked if I wanted Oncotype run and I said absolutely. Then I asked why was Her2 not done and he said, wtf, no idea, we'll do that too. Right now I will probably be put on tamoxifen since my receptors were so high for the hormones. I am 47. So I am awaiting the Oncotype score which I'm supposed to hopefully have when I meet him again on March 1. 

As an aside, I've been a vegetarian since 1990 (I was 25, almost 26) and have zero family history of any kind of cancer whatsoever on either side of the family. I'm STILL in shock. I went from 1982-2007, 25 years exactly, without even seeing a doctor for anything. I take no meds, I have nothing else physically wrong with me, I am not overweight (I'm actually underweight), I never smoked, I only drank in college.....how I got cancer and no one else on either side of the family, including my living 99 yr old grandparents who have been married 77 years, I'll never know. I have two siblings, my parents are in their 70s, everyone lives to near 100, I've only had colds and the flu on occasion, otherwise I'm totally healthy. So....for me I don't even know if I'd risk chemo even if my score were middle range. I'm not married, have no children, have rarely had a boyfriend, and was diagnosed with PTSD from a horrible breakup with a guy who was a friend/more than a friend/back to friend looooooong story that happened in June....and all docs involved thing the stress fueled this cancer to grow in the last 7 months before I got diagnosed. I felt lump back in Aug 2010, but b/c I'm small breasted and dense tissue, all I have are lumps. So they don't know if my high grade 3 is due to me waiting so long to get this checked, or was it always grade 3 for a year and a half and I sat with it? Yet nothing in nodes and margins very clear.

I'm looking at the fact that I'm single and work full time and have no one to help me.....so having chemo may be hard for me to do. But I see others on here who are single who have done it. But I also think, well what if there is a cure within 5 years? What if this was a one time thing, do I want to risk chemo? What if I do chemo and then the cure is in 3 mos after I'm done?

I reckon I just have to sit tight and wait till March 1, but he wants to start chemo before 12 weeks is up from surgery, and that gives me 2 weeks max to decide yes or no. I want to get all info and opinions before March 1 so whatever my Onco score is, I can say with confidence "I have decided fill in the blank" and not regret it.

At this point if I have a moderate score, I really don't know what I'd do. 

Hi ladies, I am waiting on my Oncotype score as well and the waiting is driving me nuts!!!  I am 37 years old and BS (who I love and trust completely) said if percentage is under 10% no chemo but if over yes to chemo because of my age.  I will also meet with MO when I have results!!  I have a very similiar diagnosis to RuthieG, 1.8cm IDC tumor, (originally thought it was 2 tumors 1.8 and 1.4 but hormone results ER/PR + and HER2- are identical so considered 1 tumor)  I had lymphascular invasion in tumor and I am Stage 1, grade 2 my Ki-67 is 21%.  I had a BLM January 31st and the cancer breast had no more cancer and the other breast was clean as well.  I did have a .3 mm micromet in sentinel lymph node but that is still considered negative node.  Did anyones ER/PR status change after Oncotype test?  I have read that it can happen sometimes.  My ER is 90% and PR is 24%.  Just curious:-)  Hopefully I will have results by end of next week so I can know what happens next and move on, I think not knowing what happens next is worse for me.  I guess I am very impatient:-)  

Hi ladies, oncotype score is in it is 21 (14% recurrence rate).  BS is sending me to oncologist and says he would recommend chemo, he thinks it would be CMF.  Now just waiting to get oncologist appt. so I can start my healing!!  Good luck to all of you:-)

Cherilynn, thank you for the good luck wishes:-)  The test didn't take as long as I thought if you call genomic health and give them your name they can look and see if they have received the sample and give you an estimated release date.  This way you know when your doc is going to receive it.  I'm very impatient when it comes to this stuff so I wanted to know when I would know LOL.  Good luck in whatever you choose, I'm praying low low scores for you!!!

Good luck with your oncotype results today Cherilynn!!!

Hi everyone - and thank you JennL, I can't believe you posted about my Oncotype score today! I just got off work as my results did come in so I lost 3 hrs commuting to MD office and back and my appt....done now, need to eat, but my news is Her2 is negative and Oncotype is 11. He said no chemo, I agree, and I'm starting tamoxifen. Crossing my fingers......I have heart disease on both sides of the family (and no cancer of course lol), but I do jazzercise dance aerobics/hand weights 3 to 6 days a week depending on schedule that week, I'm slender and now eat like a normal person should and not the sugary junk food diet I have been on my whole life....he thinks I should be ok, but will be getting the PET scans, CT scans, bone scans and multitudes of bloodwork that I know the rest of you are all too familiar with. I'm happy with the decision he made and I made, so for now, no chemo.

 I had this horrible feeling after he gave me the news and when I went out to make make my first follow up appt in a month to see how the tamoxifen is doing. The nurse who was took my vitals before the appt (I was so stressed, my BP and pulse were through the roof) said, well you look better now, and I said, I got good news so you can retake everything now, my numbers will have dropped! He said I'm very happy for you! And then as I was walking out with him to schedule the appt, I look up and there are all these people hooked up to their chemo. I started crying.....partly for relief that I didn't have to go through that, at least for now, and partly out of "survivor's guilt." I felt so awful......I sat in my car afterwards before I drove back to work and just cried. So I said a prayer to thank God for my 2nd chance and then asked for all those receiving chemo right then when I got that news to be blessed. They were all much older than me, and one guy even said to me "You shouldn't have to be here." But still.....having mixed chemo for my job in the past and watching what patients go through, I felt this sting of sadness.......I don't know if anyone else felt this way when they got their good news. I'm very grateful today....I feel like I got a new life. 

Cherilyn64: quick question for you! First congrats on low oncoscore and no chemo! I have decided not to do chemo and will be starting tamoxifen with ovarian suppression next week. I am not sure if it is based on age, but why are yiundoing PET and CT scans? My dr said we wouldn't be doin these so I'm curious what your MO says? I am not getting a bone scan either..I am 26 no problems and will just be supplementing fir healthy bones. Thanks for any insight!

Hi.  I had a similiar experience.  I had a 1.6 cm IDC (the mammo showed only a 7 mm one--which by the way, had showed up three years earlier, but was so slow growing that it did't appear to be changing until I asked my technician, what's up with this dent in my breast?).  All the initial pathology reports showed I would not need chemo:  Stage One, 0/9 nodes, Grade 1, ER+,PR+, Her2-, low division rate, low grade, no vascular or lymph invasion.  The only thing weird was "perineural invasion," which I've read does't really mean all that much anyway.  Everyone told me I would NOT need chemo (I'm 57), just radiation and anastrozole after the lumpectomy. Then my Oncoptype score came back.  They expected around a 5, but it was a 19. I am like you.  I knew that I would not be able to rest unless I had done everything possible.  My doctor gave me a mild chemo called CMF. I was able to work, then take off about 5-7 days after each treatment.  There were 8 and they lasted around five months.  I didn't loose my hair and most people had no idea I was going through this (this is both good and bad, as no one feels sorry for you).  I started Oct. 4, but had tons of energy, could stll run, work out, host Christmas, give a baby shower, etc.  The only problem I had was a weird reaction to the F component. I have a very bad stomach and I started having a heart-attack like reaction the night of each treatment. They thought it was stomach related, but just to be sure, they stopped the F component from the "cocktail" for  the last four treatments.  I was bummed, but understood, and I've gotten over it.  My radiation oncologist said it probably made only about a .5 percent difference.  I am now on to radiation, which is easy, and I am very, very glad I did the chemo, as I will never have to ask, "What if."

Because my IDC was 1.5cm and grade 3, the MO thought my Oncotype could come back in the middle range and I would have to make a tough decision. But since there's no genetic history of any kind of cancer either side of my family, he said I just a good a chance at it coming back low. He was very pleased at the score of 11. The entire chart was printed out with all the graphs, and looking at it from diffent angles, it's really good to see the percentages etc....He said how lucky I was to get this diagnosed at this time.....5 years ago with a grade 3 1.5cm tumor, he said he would have flat out put me on chemo. He says so far all his cases that have had low oncotype scores in the last 5 years and did not do chemo are all, so far, doing fine as long as they have stayed on tamoxifen. 

Oh, the Oncotype report will also give you ER, PR, and Her2 status run with different numbers so you can compare them to the other reports you got. This is RNA based and it showed the scale for all 3 tests. On my pathology report it showed the tumor as both ER and PR + at over 90%. On this test they are again both high, but the PR was waaaay high near the end. Just really interesting stuff to get and look at.

The waiting is HARD I know. The night before I couldn't sleep, and then the next day my appt wasn't till 220pm, so I had to work the first half of my shift knowing I would be getting that score soon....good luck waiting, it's hard but it's worth it. It cemented my decision for me, the doctor has had tons of experience and the first words out of his mouth were "Oh, nice a low number, no chemo, just tamoxifen for you" and I left to go back to work feeling a helluva lot better than leaving work to go there! Good luck........Oh, one more thing for Galsal: ask your MO about the clinical trial with metformin if you are close to typw 2 diabetes. May be worth looking in to especially in your case. I can't remember if it's also for ILC....but if you google it, it tells you. They have it running at 2 places close to me and even though I'm not type 2, my MO said he wouldn't stop me from doing it if I felt I wanted to take a shot at the 50% who get the med.