NEW Oncotype Dx Roll Call Thread
Comments
-
Aug242007,
I hear you about the "paddle your own canoe" thing!
Last year, after I had read about the bisphosphanates having a good track record in preventing bone metastasis, I had to ask my onc about ordering it for me. His nurse whispered the word "Reclast" to him. So, he ordered it but only after I brought the subject up.
For this and a few other reasons, I recently changed oncs. #2 knows a lot more about bisphosphanates and said he would order Reclast again this year for me (Reclast is a once a year infusion).
Onc #1 is now history.
0 -
I didn't mean to sound judgemental of anyone. I was just trying to let you know that SOMETIMES, the Oncotype test results are NO HELP WHATSOEVER, as in MY case.... that is the point I was trying to make... that in the end, you may have to make this very difficult decision without CLEAR guidelines from the Oncotype...
Thanks, Marlenet....
Harley
0 -
Please add me to the roll call.
My score was 11-recurrence rate 7%. LMP, SNB, RAD X 33, TMXF. I am 50 years old and premenopausal.
The first oncologist I saw recommended chemo, pretty much solely based on the size of my tumor(1.5 cm).
Thank goodness I got a second opinion. I also wish all surgeons and hospitals ordered the Oncotype test at the time of surgery-mine didn't. It was ordered 3 weeks after my surgery by the 2nd oncologist I saw. I could have had my results by that time if it was ordered at the time of my surgery, instead, I had to wait almost 3 more weeks.
Mary
0 -
Harley-I don't think you sounded judgemental at all. I agree with you that if your number falls in the gray area (18-31, according to my dr.) the oncotype test really is not much help at all. I had already decided before I got my results that if my number was in the gray area, I would have chemo. That would have been MY choice, maybe not someone else's.
We all do what we feel we have to do for ourselves, not what others think we should do.
Mary
0 -
Thanks, Mary... I read thru my post again, and worried that I sounded too harsh.
If I had a score of 18 I may have chosen not to get chemo. My onc told me that he was fine with me not getting chemo. He said "If you get a score of 40 or higher, you will get chemo...
It is definitely a very difficult decision, and everyone needs to do what THEY think is best, and they need to feel comfortable with their decision. I left my onc's office the day I got my oncotype results and I had the script for Tamoxifen, but I wasn't comfortable with my decision. So I called him back a few days later, and said that I'd changed my mind.
I mean, who REALLY wants to get chemo?? They really have been over treating us. I see you got 11, and that is GREAT!!!
Harley
0 -
Harley, I was in the gray area to begin with and was expecting that the Oncotype would come back that way too. After much anguish, especially with an onco saying I would die without chemo but my gut telling me and praying about it telling me...NO....I kept researching til my brain was hurting...Finally decided to go with whatever the Oncotype indicated. I knew that there is no ONE factor and NO Guarantee no matter what I chose. I so expected the Oncotype to come back in the gray area and wasn't entirely sure which way I would go if it did. I got lucky and had a score that was definitive at least for one diagnostic determinant. So, it gave me the ability to choose what I probably wanted to choose anyway. I am just so happy to read about so many of your oncologists who would have definitely been more on the same page as I than my soon to be Ex-onco who is very nice and concerned but very not on the same page with me.
0 -
I got my score back this week, 12. So no chemo. Still haven't had BRCA test yet. Oncologist was indicating ovaries out withing 2 years...I didn't have time to really question that. I thought Tamoxifen for 5 years but she is thinking differently. It never ends does it?
0 -
Sitting at home recovering from my bmx/with reconstruction. Surgery was on Monday. Doctor called last night and said that the cancer was actually only 6mm and no lymph node involvement. He then told me that I would most likely not need chemo and that he would be ordering the Oncotype test for me. OK, so no radiation for sure, chemo unlikely and Tamoxifen for 5 years does this sound right to any of you. I know I need to get my score back but the oncologist that I met with early last week said almost the same thing but need to wait and see final path report and onco test. Any advice???? THANKS!
0 -
Dublin4,
Not an MD, but after all the research I have done, it sounds absolutely right to me. If your tumor was only 6 mm that changes a lot. I am sure the Oncotype test will come back with a very low number. Remember that there are a lot of different treatments out there and surgery is one of them. Sometimes it is the only one that is needed. Also, once surgery removes the tumor and you have clean margins (meaning "they got it all") and there is no evidence of node involvement, then the therapy you would have would be adjuvant therapy or treatment just to decrease the chance of recurrence. Chemo usually is not effective for small tumors that are ER+; but those type of cancers do respond well to adjuvant hormone therapy -- thus the tamoxifen. So, all this sounds absolutely right to me.
0 -
Luna 5,
A Zero, that is awesome! It's so good to hear that so many people are coming in with low scores. As far as having to beg for the test, it absolutely shouldn't be that way. Ask if your oncologist follows NCCN protocol. That is the latest approved data for the oncologists to go by. From what I've been told, if they don't follow that protocol, you don't want them for your oncologist because they're behind the times. When treating breast cancer it's so important they be current on the latest treatments.
Susie
0 -
Hi All
I had been waiting for my results from oncotype test for the past 3 weeks and finally just got the answer. This after waiting for 3 weeks for results from bilateral, before that, waiting 3 weeks for results from excisional, before that, waiting 3 weeks for results from MRI guided biopsy etc.etc.etc. NO RESULT. I have been told that California contacted my hospital for more tissue. The lady running the clinical trial at my hospital, contacted the hospital in Toronto and spoke to pathologist there and was told there is no more to be sent. She has asked the pathologist for something in writing to this affect, but basically they don't have enough tissue to do the test. I have a copy of the pathology report, which states there was .5cm of PILC that was found. This according to the specifications of the trial is the amount that is required to perform the test, so I am wondering where the rest of the tissue is?????
I think that it would really have been helpful in deciding whether or not to have chemo, to have the score. Of course this is just a tool, but it sounds like it is the best that we have right now, and to at least have a "number" would be helpful. My oncologist is up on the current latest treatments and that is why he sent my tumour in for this test. Like he said, sometimes smaller tumours can come back with a high score, and that is why this test is so important.
I am somehow going to try to find out how much was actually sent to California. I don't know if Toronto would send all of it or do they keep some of it? Did it get lost or slides broken or something? I would appreciate any thoughts or opinions.
Cathy
0 -
Cathy,
I'm confused about the "trial" that you keep referring to. The usual procedure is that your oncologist fills out a form and has the pathology lab send the sample to California for the oncotype Dx assay. Usually the pathology lab only sends the required sample; they must keep the remainder there for any future tests. I would call the pathology lab directly and see what they sent and what they currently have.
I actually had to pick up my samples from the hospital and fedEx them to the lab (it was a political thing between the lab that had my sample and the hospital that the oncologist worked for).
Marianne
0 -
Diagnosis: still alive0 -
count me in- score 18 (11%) LMP, RADs x 30+/-, AI, age 45
0 -
Hello Dublin4,
It is great to hear that your oncologist thinks you won't need chemo. As tngolfer already said, everything you mentioned (no chemo, no rads, tamox for 5 years, etc) sounds right to me. This is exactly what my treatment was supposed to be.
I saw 2 different oncologists who told me the same as you, that my oncotype would certainly come back low and that I would certainly would not need chemo. Well, my oncotype score was 21, an intermediate score in the dreaded "grey area"... so I did chemo. It is great that your oncologist is cautious and wants to wait for your oncotype score to be back. My oncologists were overly optimistic and based their predictions on statistics.
So I hope that, unlike me, you fit the statistics and that your score is low. Let us know your score when you find out. I doubt you'll do chemo. The fact that there is no node involvement and that your tumor was only 6 mm are very good signs!
0 -
Thanks for all the info. I am hoping that the score is low and chemo will not be needed. But if I need it I will certainly do it. I will keep you all posted, but as you know its a waiting game.
Thanks!
0 -
Susie 123 That's just it...my onco believes himself to be following NCCN protocol but disagreed with that part except that he has recommended chemo based on a higher score. I don't see how it can be a viable tool to recommend chemo but not a meaningful tool to choose not to do chemo. From some things my onco said, I think he recommends chemo all the time to avoid being sued.
0 -
Praying for health and low scores to all the BC.org women.
0 -
Hello Ladies,
I'm so confused and looking for some opinions. I'm going through 4 rounds of chemo. My doc ordered and told me "You're grade 3, you should do chemo no matter what" I asked about the OncotypeDX and she said "You don't need it, you're doing chemo." Finally I said, I want it!!!! (Remembering that I must be my bet advocate) She finally ordered it Recurrence rate 7, distant reoccurence rate 6%. I did the chemo because I was grade 3, but ha anyone else heard of thi. My ONC was even shocked that it was a 7? This assumes that I will take Tamoxifen, but it seems there are a lot of women having trouble wiith Tamoxifen? CH
0 -
I've heard of alot of issues with Tamoxifen (pre menopausal) and Arimidex (post menopausal) but if our cancer is estrogen+ it's very important that we take it. Estrogen+ means that the cancer feeds on the estrogen in our bodies. We have to cut off it's food supply. Hopefully we'll be able to make it for 5 years on these drugs.
0 -
Cathy and Marianne,
Correct me if I'm wrong but the Trial X is the oncotype equivalent in Canada.. My onc told me that all of our tumors are stored in paraffin wax in a little cubicle at the hospital. I envision an entire room filled with little 2x2 cubbies where hundreds of thousands of the tumors are stored. They keep them for like 25 + years. Cathy, based on your type of cancer, you could have been afforded a low score. I would keep badgering the doctor until he can give you something more concrete.
Speaking of Canada, I'm enjoying all my relatives on holiday here in rainy AZ...eh
Kat
0 -
Kat,
What I know about the TailorRx is that it uses the results of the OncotypeDx, so I think it is just a study that collects all that information; it is not a separate test. And you're right. All those tumors are stored in a parafin block. I think it is up to the hospital how long they are kept, but that would be interesting to find out, in case something comes up in the future!
I also agree that based on what we know, Cathy's score would be low.
Enjoy those relatives and enjoy Arizona!
Marianne
0 -
Hello all,
Just got of the phone with my doc. They are doing the referral paper work so that I can meet with the oncologist now that my surgery is done and path report is in and we can move along the waiting game a little. The doc told me that he will put in the request with the oncologist for the Oncotype DX test. I actually spoke with the person who represents the company who does the test. She said that given my stats I should absolutely have the test done. My doctors seems to be moving right along with this, no objections what so ever. I hope you all are moving forward as well. I will let you know. Hopefully the drains will come out this week and a little more normal will return.
0 -
Just fyi to everyone about the TailorX Study, it is very important that everyone who can be part of the TailorX study. You can google it for more information but below is a general synopsis:
TAILORx Overview
The National Cancer Institute is using Oncotype DX to assign treatment to more than 10,000 breast cancer patients in landmark personalized medicine trial. Click here to learn more.
The National Cancer Institute (NCI), part of the National Institutes of Health, is using Oncotype DX to identify and assign treatment to more than 10,000 breast cancer patients from 1,500 sites in the United States, Canada, Ireland and Peru in a first-of-its-kind individualized treatment trial called TAILORx (Trial Assigning IndividuaLized Options for Treatment (Rx). Coordinated by the Eastern Cooperative Oncology Group (ECOG), TAILORx is designed to evaluate the effect of chemotherapy in women with a midrange risk of their cancer returning, as determined by Oncotype DX. This trial will evaluate the effect of chemotherapy only for those with a midrange Recurrence Score, as previous Oncotype DX studies have already confirmed the benefit of adjuvant chemotherapy for those in the high Recurrence Score range and minimal, if any, benefit for those in the low Recurrence Score range. TAILORx will be one of the largest adjuvant treatment trials in breast cancer ever conducted, and has enrolled nearly 8,000 patients to date.
"TAILORx represents the culmination of a major initiative to integrate molecular diagnostic testing into clinical decision making," said Joseph Sparano, M.D., principal investigator for the Eastern Cooperative Oncology Group (ECOG) and director of the Breast Evaluation Center at the Montefiore-Einstein Cancer Center in New York. "This is the first trial from the NCI's Program for the Assessment of Clinical Cancer Tests (PACCT), which seeks to individualize cancer treatment by using, evaluating and improving the latest diagnostic tests. Oncotype DX makes this trial possible by enabling us to separate women with high and low scores, whose treatment paths are clear, from those who fall in the midrange."
0 -
Aug242007,
Are you saying that if I already had the Oncotype test and fall in the mid-range (score of 19) they will assign chemotherapy? Because if that's the case, I want no part of it. Please let me know if I misinterpreted your comments?
Marianne
0 -
The Tailor X study does a random assignment for those in the middle. If you have chosen no chemo, they can randomize you to no chemo. I chose no chemo and they were able to randomize me to no chemo. In other words, you have a 50/50 chance of chemo or no chemo. If they randomize you to no chemo, get them to try again.
0 -
Aug242007,
Thanks for the info....I see the oncologist Wednesday and I'll ask him about it. I would do anything to help those that will travel this road after us.....and I think it is VERY important that those of us who choose not to do chemo are followed.
Mariann
0 -
Hi
Like Aug242007 has said the TailorX is a clinical trial using the information from results on the Oncotype test. For us Canadians, the oncotype test is not covered under insurance (although as of yesterday, Ontario will start covering under certain circumstances). So if a woman in Canada wanted to have the test done, it would cost approx. $3,600.00. OR she can go into the TailorX clincal trial. They will do the Oncotype test and depending on your score, that will determine your treatment. A score under 11 = No Chemo, A score above 25 = chemo and a score between 11 and 25 you will be randomized to do chemo. So 50% of the group 11 to 25 will do chemo and 50% of the group 11 to 25 will do hormone therapy alone.
I just got off the phone with California, as I am trying to find out about my case. What I have been told is they require a minimum of 2mm in order to do the test. I had a total of 6 CM of tissue taken out of which was extensive PLCIS and inbedded in the PLCIS was .5 CM of pleomorphic invasive lobular carcinoma. They did not receive enough tissue to do the test. The hospital that has my tissue is saying they don't have anymore to send. Something is not right here. California has received 14 slides and I have a pathology report that says there was 27 slides, so where are the rest of the slides. I have contacted my hospital again to try to see if she has found out anything, so far her calls to pathologist have not been returned.
I would just like to have the results from this test in order to make the wisest decision as to whether or not to do chemo. The oncotype test is the only sure way to look at each of our specific tumours and how agressive they are. Since the pleomorphic element is so new and rare, this test would be very helpful.
Right now I don't know what to think. Does anybody have any reasonable explaination for what might be going on? I can't help but think awful thoughts. Recently there is a big case in Windsor Ontario, where a woman just had a bilateral mastectomy in January because she was told she had breast cancer, only to find out now, that she didn't. yikes!
Thanks Cathy
0 -
Cathy,
just thinking out loud, but perhaps they did not have enough tissue from the invasive component to do the test. I don't think they would test the lcis, so were those slides not sent? I know there has to be a minimum amount of tissue, (invasive)but don't recall what it is.
I was fortunate to have my oncotype test covered by insurance, less a $300 co insurance. I declined entering the TailorX because i didn't want to leave my treatment decision to the flip of a coin. Also, you are strongly discouraged from dropping out after you get the results, so it's not used purely to get the test done.
I know Genomic provides some financial help when needed so I would contact them. They are all very accomodating and helpful.
MM
0 -
Hi Cathy,
It's Marianne again. I am sorry that you can't seem to get a straight answer from the pathology department that received your tissue. The Oncotype is a great tool, but if you can't have it done, you are still going to have to make a decision. Don't get hung up on the "pleomorphic". I, too was diagnosed with pleomorphic ILC. The term "pleomorphic" only has to do with the way the cells line up; it is not a critical factor. There is another way to find out if your tumor is aggressive or a slower growing tumor. Does your pathology report show a Ki67 rate?
Cathy, you also need to understand that, at this point, that tumor and most or probably ALL of that cancer is gone--you had the bilateral mastectomy and no nodes were involved. Again, because your tumor was ER+ it WILL respond more effectively to hormone therapy than chemo.
When the tumor is taken, it is my understanding it stay in tact at the pathology lab and only if they have to send a sample somewhere do they make the slides.....that might be a great question for the pathology lab you are dealing with.....
Cathy, remember too that DCIS or LCIS is not actually cancer; it is a "marker" for something that may develop into cancer. I am not trying to minimize your situation and I understand your fear (we have all been there). I just think you are in a pretty good situation. Talk to your oncologist....is he/she recommending chemo? Do they have access to any online computerized tools to help them make the decision for adjuvant therapy (like "Adjuvant Online")? What do they base their recommendations for chemo on (if they don't use the Oncotype)?
Hang in there!
Marianne
0
