low oncotype score/still do chemo?
Comments
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Hi---
was curious what people did, if anyone faced anything similar.... I just got my score back, oncotype 14, which gives me a 9% chance of recurrence. Which is frickin great. Breathing easier!
I think my onc is still going to recommend chemo (according to her nurse), considering my age (39)---four rounds of Taxotere/C, and was wondering what people in a similar situation decided upon? What did your oncs tell you?BTW, I was node clear, tumor size 1.7 cm, had bilat masts. the rest of my stats below.
Anyway, previously, I was also told I would have about 8% reduction of recurrence with chemo, and a 13% reduction from hormone therapy, so not sure how that factors with my oncotype score in terms of chance of recurrence. How to do you calculate these things to determine actual benefit of chemo etc?
one thing, I'm still fertile, and (back when life was normal anyway) was/am thinking about having kids in the next few years, taking time off tamox etc. so that's in my mind.
thx,
Sharon -
Hi Sharon, my oncotype score was 17 i had stage 1 grade1 IDC and DCIS in left breast. Had bilat mast Feb2 07. My onc decided agaionst chemo because of my score. Also no node involvement. Hopefully you can do just Tamoxifen like me. I am off Tamoxifen for the time being as I had a hyst and ooph last month. Will see my onc Weds to see what other course of tx I will do. Good luck to you and God Bless. You really have a greta prognosis there.
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My oncotype score was 15, and tumor was 95% positive for both estrogen and progesterone, so I decided against chemo. Started on tamoxifen but CYP2D6 test came back with 2 null alleles, so I switched to Aromasin (I'm 55 and was one year post-menopausal when I started Aromasin).
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Hi Sharon-
My oncotype score was 10 with a 7% risk of recurrance in 10yrs.
I had bilateral mast also with a 1.5cm tumor. My onc stated my benefit from chemo was only 1%, so I opted for tamox and zolodex shots to shut down my hormones. I also took the CYPD2D6 test and found a am a good metabolizer of tamox.
I was 48 when dxed in 06.
Julie
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In addition to the oconotype, there's something online that my onc did. I cannot remember what it's called but I think most oncs have access to it. It gave the benefit percentages with various treatments according to your tumor status, age, etc. In my case, I needed chemo, but the program determined that Taxol would only give me a 1/2% benefit and so I only had AC. You might want to ask about this. Good luck.
Amera
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I think what Amera may be refering to is adjuvantoline.
Julie
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When I went to my onc's office he asked me about joining a study group (TAILORx) and said that when my Onocotype score came in at 15 I could make up my own mind as to whether or not to stay in the test - I was randomized to do chemo. My decision (supported by hubby and friends) was to do the chemo - 4 tx's of Cytoxan and Taxotere. Why? Well, my opinion is that IF it recurs I can say that I did everything I could to prevent it.
It's a very difficult decision to make and everyone has to really weigh their options and do plenty of research.
Good luck and God bless.....Trina
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I also scored a "16". I was randomized to take chemo for the TAILORx trial. 4 sessions of Taxotere & Cytoxin. Will start January 30th.
As guggerty said - even with a 10% chance of recurrence, if my cancer should come back in 10 years, or whenever, I want to know that I did everything I could to prevent it.
It still remains a very personal decision. No one can tell you the right thing to do. I feel like there might be some people who think I'm wrong to go with chemo, but IT'S NOT THEIR CANCER!!!!
Go with your own decision and be strong.
((hugs))
Sunshine
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I had a "prophylactic" mastectomy in Nov. 2007 due to family history, etc. It turned out that I had a 8mm cancer. My octotype is also a 15. I am 100% estrogen pos. 85% progesterone pos. HER2neg. I am 38 years old. Initially my onc. wasn't going to prescribe an AI....I had to present an arguement as to why I should be on it (he is a highly regarded onc!!)...I then decided to go for a 2nd opinion...this onc. knew about the TAYLORx trial and is offering Taxotere/Cytoxen....I too am opting for that treatment. I also had a hysterectomy/oopherectomy. I have a 2 year old and 4 year old along with a very supportive husband. I may be overdoing it, but I cannot look back and deal with the "what if's"? Thank you for sharing your info....I hope that everyone is well.
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thanks everyone for your posts and honest answers. I too am waiting for my test to come back and weighing both sides. It was good to read what plans you are doing based on the numbers that come back. Thanks for sharing your thoughts.
Sunshine - how did your first treatment go. What was the time frame from when you got back your scores to when you started treatment.
napryan - did you start your treatment yet - what plan did the onc. suggest.
trina- I share your thoughts, I want to do all I can. My family is very supportive also, thanks for your help.
K
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I'm waiting for my Oncotype score, too. When I talked to my oncologist last week, he asked me to sign up for the TAILORx trial, since I'm post-menopausal with ER+ IDC and clean nodes. He explained the trial, including the randomization to chemo vs. no chemo if the recurrence score was between 11 and 25. He said if I ended up with chemo, it would be 4 cycles of AC. Whether or not I get chemo, I'll be on an AI for at least 5 years.
I declined to enroll in the TAILORx trial because I was uncomfortable with the chance of being randomized to chemo despite a relatively low score (say 11 or 12), or randomized to no chemo with a relatively high score (say 24 or 25). My onco said I needed to decide whether or not to participate, before he would send my tissue for oncotype testing. I read the TAILORx patient information booklet, and it said prior testing was allowed. That discrepancy was another reason I declined to participate.
I haven't yet decided how low a score it would take for me to decline chemo. Maybe I should say that the other way around. I really do not want to do chemo; but I don't know how high a score it would take to convince me to do chemo. I know it would fall in that mid-range, probably around 18 or so. My oncologist said if I declined the coin-flip method (the trial), he and I would work it out together.
I was told it would take 3 or 4 weeks to get the results of the oncotype test.
otter
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I'm also waiting for the test results. For me, the key will be knowing what the absolute risk of recurrence would be with chemo vs. without. If my score puts me at 10% risk, and chemo would only change that by 3% or so, then I think I would decline. I don't think I would choose chemo for an absolute benefit of less than 5%, but I'm going to wait to see what happens before I actually decide. I want to see what my oncologist recommends, as I do think highly of him.
I find out this Thursday!
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Well, Otter and Sandilee we'll wait this out together. Thinking good thoughts and sending them your way. Sandilee -let us know how things turn out on Thursday. Otter I too was told the same time frame. Just think all our specimans are sitting there together now in sunny california....Here's hoping that the time flys by...
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Hi there... my oncotype score was 28! I thought that was VERY HIGH, considering my bc was .8cm, stage 1 and the lymph nodes were CLEAR! I decided to get chemo (4 txs of Taxotere & Cytoxan) because I wanted to make sure that I did everything I could to prevent recurrence... bc is SO scary!!
But, you have to do what YOU feel is best for YOU...
Good Luck!Harley
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For you ladies who are thinking about TAILORx trial. You can get the test and not be on the trial, or get the test and decided NOT to stay with the trial. You can withdrawal from teh trial at ANY time. It's a contract you sign saying you'll adhere to their follow up and such but you CAN QUIT at any time without reprecussions. PLease don't let some doc make you think you HAVE to follow the recommendations of him or the test by taking the tests. THat is simply NOT TRUE! There is a place on the web where you can find a lot of info about the Trial.
And yes,I was one of the women who had a low score of 10% and was randomized to take the chemo and did. A/C X 4. My concern with the who tx was that I had 2 tumors (one IDC and one ILC) and the ILC was not found through Mammo or U/S but only through the MRI. I had a whole lot of other things go into the decision, but do NOT regret I was in that arm of the trial. At this point in my tx, I have NEVER felt comfortable with my onco and will most likely be switching to either his partner who can speak and understand me better, or will leave the trial and find another. I'm more concerned with my health, than staying on the trial. Although I have ever intention of continuing IF I can find another local doc who is a part of it also.
Oh, the score is with the idea that you will do a hormone tx, so that % already includes that. I think that's what myself and others have read anyway.
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My score was 15 and my onc thought that I should do the chemo because of my age (40 and pre-menopausal). I did it (reluctantly) and I am glad that I did. I did four tx of TC and it wasn't that bad. My insurance (Anthem of Virginia - Blue Cross Blue Sheild) has denied the cost of the Oncotype dx test, saying that it is experimental medicine. I have appealed it to the state of Virginia and hopfully they will make them pay. I am keeping my fingers crossed because I sure don't need a $3,600 bill after paying about $8,000 in medical costs last year. But, at the end of the day, I am glad that I had the Oncotype test done and that I did the chemo.
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Urbie,
My insurance FLAT OUT REFUSED to pay for the Oncotype test. But, the Genomic Health company has a plan for financial assistance, and if your annual Adjusted Gross Income is less than .... $ 52,800, I think, you may be eligible for assistance... in my case, they told me that they would write off the entire $3650. They will also take into account any expenses that you have, like your health insurance premiums and any deductibles you may have, rent or mortgage payments, car payments, homeowners insurance premiums... It is worth checking out.
I will be mailing a copy of my 2007 tax return to them today.God Bless,
Harley
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I am wondering....for those of you whose insurance refused to pay for Oncotype testing: was your test done before Oncotype testing was approved by the FDA? I think some insurance companies have revised their policies to include the test, now that it's been approved.
At least, I hope that's the case, because my test request was submitted (supposedly) last Friday. My BC fits the profile, so the test ought not to be considered "experimental" in my case. Even so, the TAILORx trial coordinator at my clinic told me last week that the Oncotype test isn't done "automatically", even with ER+, node-negative IDC in a post-menopausal woman. I wonder why not?
otter
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Harley, I bet you were surprised when you had the score of 28. My tumor was only 1.4cm, node negative, so I am thinking I'll be on the low end of the score, I guess you just can't tell. I too want to do all I can do, can't wait to meet with Dr. on Monday.,
Urbie, does age have anything to do with a treatment plan. I am in my 40's and pre-memo too.
Sandilee, how did your appt. go. What plan did he recommend.
Otter, my results are IN, of course, they won't let me know over the phone, go figure. I am happy at least they are with the dr, though. I thought they wouldn't be back till next week. Waiting on pins and needles. Just want to get the show on the road........
One quick question, I see that most people have either TC or AC, what is the difference, thanks -
K
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When was it approved by the FDA? I can't seem to find that out. My test was done in early September and we are still fighting it. Now it is up to the state of Virginia to decide and from what Genomic Health tells me, they have overturned many of the refusals. My breast surgeon says that they (Anthem) are one of two things; dishonest or stupid. I think that they are dishonest and eventually they will have to pay for this test. Most major insurance companies do now, and even Blue Cross Blue Sheild of California will pay for it, but not BCBS in other states. I don't get it...
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my score was 16, and my onc did not recommend chemo.
i had a lumpectomy, and my tumor was 2.2cm, er/pr+, her2/neu-, grade 2, stage 2 IDC, 0/3 nodes.
i am doing radiation now, and i will start tamoxifen in a few weeks.
i have a 10% risk of recurrence, and my onc said that chemo would not significantly benefit me.
i will get a second opinion, but i am still hopeful i won't have to do chemo.
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Correction--
I'm sorry, Urbie--I was wrong. The FDA has not approved Oncotype DX, at least from what I could find on the web today.
I had read that the Amer. Society of Clinical Oncology added Oncotype DX to its guidelines for diagnosis of BC in Oct. 2007; and the National Comprehensive Cancer Network (www.nccn.org) added it to the latest version of their guidelines, issued Jan. 2008.
I had also read some optimistic news from Genomic Health (no surprise!) about increasing numbers of insurance companies providing reimbursement for the test. For example:
http://money.cnn.com/news/newsfeeds/articles/prnewswire/AQTU09605022008-1.htm
which says insurers covering 70% of insured people in the U.S. now reimburse for Oncotype DX. That statement was part of the 4th quarter 2007 financial report from Genomic Health.
Since I am hoping my own insurance company covers the test, I guess I extrapolated all those recent approvals and inferred that the FDA had approved it. Apparently, the company does not even have to have FDA approval in order to market the test, since it's a "clinical laboratory reference service" and is exempt from FDA approval.
FWIW, there was an oncogene test approved by the FDA last year (Feb. 2007): the MammaPrint test. That test is done by Agendia, a company in Amsterdam. I haven't heard anybody here talking about results of that test, though.
Darn. I just hope my onco sent it out anyway. It would really peeve me if they've held off for the past week, waiting for BCBS approval. I'll write 'em a darn check, for pete's sake. My life is at stake here!
otter
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mom2daughters,
My general surgeon (and my onc confirmed this) told me that age DOES have a lot to do with our chance of bc recurrence; i.e. the younger we are at the time of dx, the longer we have left to live, the higher our chance of bc recurrence will be.... it makes sense to me.
So, even though I don't know how reliabe a score of 28 is, I could understand that maybe if I am younger (was 43 at dx) then maybe I should go ahead and get chemo. I got 4 txs of Taxotere and Cytoxan, and even though I am the biggest chicken, I survived the txs... If I can, then so can you!!
Hugs
Harley
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mom2 daughters- I received my score this afternoon!
It came back at 19. My oncologist did not recommend chemo- if anything, discouraged me from getting it- but put me on Femera for 5 years. He also ordered a bone density test, and a colonoscopy- ugh! I haven't had one, and I he felt it is very important for people over 50, and especially those of us with breast cancer.
I thought I was going to have this big decision to make if I came out in the middle range, but I'm very comfortable with just the aromatase inhibitor after talking with my onc. And relieved!
I'm 57, and I do think age has a lot to do with how aggressive the doctors feel they need to be to be effective.
Otter- could you call your doc's office and check on whether it has been sent out yet and what information your insurance company has given them regarding what they cover? I think that getting this approval is something that the doctors do for us routinely, and I would think they could tell you something about how it is going.
.
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Sandilee, yes, that's exactly what I'm going to do, first thing tomorrow morning! I'm glad to hear you're exempt from chemo with a score of 19. The more I read about long-term side effects of chemo (adriamycin/cytoxan, in my case), the less inclined I am to choose it if I have decent odds without it.
otter
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Sandilee, I am new here and I have the exact dx that you have so you are of interest to me. I have been waiting 2 weeks for the onco test to come back. Congrats on yours. I can only hope for such a report. My question to you is..Why did you have the mas instead of a lumpectomy. They told me with my Dx, I could do the lupectomy.
Did your Grade III scare you at all even if all the other stuff was small? Can you tell my anxiety is almost through the roof?!Accualy anyone can answer to help with these questions. Thanx
Artsee
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I'm going to get a 2nd opinion next week and might consider signing up for the Tailorx clinical trail. My score is 16. I will make sure TC is an option as I won't take AC due to the side effects I've read. When I 1st saw my oncologist he said if I need chemo he would give me AC. But I found a lot of info that said TC was better. Now he agrees with me that it can cause heart failure and also he mentioned leukemia. I didn't say anything how last time he said AC. Just make me wonder if women doesn't do their homework how many doctors try to give them the cheaper AC.
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Hi rockwell_girl - if you sign up for the TailorX trial they do not dictate which chemo you have .. that is up to you and your oncologist to decide - the specify something like "standard of care"
With a score of 16 you're in the low risk for recurrance category - is your first opinion oncologist recommending chemo ?
I hope that things will be clearer after your appt with the second opinion oncologist and that you'll have your treatment plan in place quickly.
Hugs,
Doreen
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When we finally got all the info back my 1st oncologist thinks hormone therapy (tamaxifin) will be enough treatment. Before getting my score back I had made plans to get a 2nd opinion and want to go ahead with that appointment. I did have vascular invasion so I just didn't know if it would be a good idea to take further test. 1st oncologist says no.
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Hi Sandy: I'm glad you're still getting a second opinion ... I'd be concerned about the vascular invasion ... I wonder how/if that factors into the oncotype recurrance score. I'd also be wondering if additional scans should be done. Please let us know what your second opinion onc suggests.
Hugs,
Doreen
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