Oncotype Score 18
Just looking for some advice...I am 42, 1cm, IDC, lumpectomy 11/18, Est/Pro+, HER2-, 0/3 nodes, clear margins,Grade 3, and was just told on friday that my Oncotype score was an 18. My Oncologist was very unhelpful and basically said it was up to me..I am struggling with my decision as I was hoping Chemo was not part of my treatment...I have a second opinion scheduled on the 29th of Dec...Can anyone please give me any feedback if you have had a similar case and what you decided to do...Many thanks
Comments
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dcoffey:
I am 59 (58 at dx) and had ES/PR+ HER- 0/2 nodes, grade 2 and my oncotype was 19 (actually about a 18 1/2 according to oncologist). I did not need chemo or rads. I had DMX on 9/20 with immediate reconstruction. I take tamoxifen.
0-18 is considered low risk I believe.(not sure on this # though) Your oncologist should be able to give you recurrence %'s based on your path report.
Since your oncologist is not giving any recommendations I would definitetly get a 2nd opinion.
Good luck and keep us posted!
Jan
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My Oncotype score was 26. I too had Grade 3 which was what concerned me the most. You can see other info in my signature. It was recommended that I be treated with chemo. In addition to the Onco score I also had a Mammoprint and that too showed a high risk for recurrence without treatment. Definitely get that 2nd opinion and learn as much as you can about all your options. It will help you make the best possible decisions for you and that is what will give you peace of mind. The people on this site are wonderful and full of terrific advice!
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Thanks for your replies...Yes She told me my recurrence was 12 % but would be reduced to an 8 % with CHEMO, but don"t know if the risks outweigh the benefits.
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Also 1-17 is low..My 18 is beginning of intermediate
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dcoffey: I also had the mammaprint and that came back as 'low risk'.
Get the 2nd opinion and like mari said the grade 3 may be of concern or the deciding factor.
My recurrence is 12% also but there was not reduction or very very little with chemo.
Tamxoifen seems to be the med of choice for me.
Just remember, everyone's cancer is unique and what may be right for one person won't be for someone else.
Jan
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What is a mammaprint?? I have not heard of this...Do you know how long this test gtook to come back??? .....Thanks, Dawn
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Dawn, there's a lengthy thread here called Oncotype-DX Rollcall. You can find it by using the search box to upper right. On it many women tell their Oncotype scores and what they decided about chemo.
Also, just a heads up ... When you first join BCO, you're limited to 5 posts per 24-hr period, which is done to prevent scamming. It can be very frustrating though when you get shut out for 24 hrs. If that happens, you can continue to chat with anyone here by clicking on their avatar or screen name, which will take you to a page with a Private Message (PM) feature. Just thought you'd like to know... Deanna
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Hi, I am 42 I was diagnosed with invasive ductal and lobular cancer. My ductal was actually tested twice ( the second time by mistake.. I know scary! ") and came back with 2 different scores first ones was a 14 second a 22, the lobular was an 11. I went for second opinions and both oncologist said it was up to me because all the other factors were good. I had a bilateral masectomy and the cancers were both very hormone sensitive, I think my decrease of non reoccurance was about 4% with Chemo, for me the risks of chemo didnot outweigh the risks and the oncologist were comfortable with that too. I am on Tamoxifen that isnt a walk in the park either, whatever you decide we are here to support eachother
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dcoffey I just turned 43 when diagnosed last year. My oncotype dx score was 17..low but the highest end of low which is now the new intermediate 9as they are changing the scale that above 12 is in the grey area) Anyhow, initally I was like OK 11% chance of recurrence ...thank you very much! I will be on Tamoxifen...have a nice day dr see ya in 6 months. Then I met with the Oncologist my BS referred me to. He said he doesn't recommend chemo unless it gives you a 4% benefit. I was at 3% absolute benefit WHICH could be higher as much as 5%. So I was like thank you very much as I certainly did NOT want to do chemo...had scheduled a second appt for another oncologist (didnt like personality of BS referral) just when I was about to get on with my life..my BS called me into his office. He was upset that I was not doing chemo..he said the final pathology on my mx found a 1mm tumor that was poorly differentiated which suggested that the cancer was becoming more aggressive as it hopped from duct to duct (I had 4 tumors in total biggest one 9.25mm smallest 1mm) He said he thought of me as a sister and wanted me to do all I could do to battle this cancer. He did a "mortality" model using all my histology and biology from my path reports and it was a little scary. I then met with my second Onc and he said the same thing, that if I was his friend or family member he would want me to do chemo. I thought of my nieces and how I wanted to ensure I was around for them and that I fought this hard. I said to my onc I just can't imagine if I did chemo and still had a recurrence...he said imagine how you would feel if you had a recurrence and didnt do chemo.
I did 4 rounds of Taxotere and Cytoxan. I will say if I didn't lose my hair I would have absolutely no regrets to doing it. It was tough but I weathered it pretty well with no real problems or side effects. I am glad I did it as I know I did all I could to prevent recurrence. My hair is growing back and I am getting back to my normal life. Its not easy and you will sacrifice some time now so you will have more time later. It has truly given me a peace of mind to move forward.
Good luck with your decision. PM me anytime if you have any questions.
Stay strong!
Diane
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Diane, when did the oncotype dx scale change? Are you referring, maybe, to the Tailor X studies in which women with oncotype scores of 12 and above may be given chemo, as part of the overall investigation?
Dcoffey, you are very young and grade 3 is a bit worrying. Do you know what is your estrogen response score? The higher it is, the more responsive it is to Tamoxifen. Let us know what is your second doctor's opinion. We are here for you.
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This is a very personal decision. I too have an 18 Oncotype score. I struggled to decide whether to go with chemo or not. My Oncologist left the decision up to me on chemotherapy. He said he would support me no matter what decision I made.
I came to the decision on chemo by doing resaerch and thinking about my age (31), although my cancer was slow growing I had multiple small tumors and more than one BC cancer types, I also thought about how I would feel if the cancer returned and I had not gone thru with chemo. I also thought about what I would feel if I had serious side effects from the chemo but no recurrence.
I finally decided that I am young and hopefully have many more years to come. Only 3% of people at my age get BC anyways...so what does that say about Stats? I could be that 11% that has a recurrence or I could not..no one knows. Ultimtely, I would likely be unhappy later in life if the cancer came back and I had not taken all the treatment options presented to me. I also considered that my oncologist said I was young, healthy and atheletic so the risk of side effects from chemo were very low.
Such a tough decision but definitely one you need to go with your gut on and make sure you are the one that feels confident in whatever you decide. Chemo sucked but it was doable..if I can do it anyone can.
Just checked genomic health's site. Recurrence scores still as follows: •Cut-off points for Recurrence Score risk groups are defined: - A low-risk group with an RS of <18 - An intermediate-risk group with an RS between 18 and 30 - A high-risk group with an RS of ³31
I just checked my copy of my report and it says intermediate risk group for score of 18.
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Mine was 18, too. My oncologist said chemo was NOT recommended
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Hi,
My Onco Score was 18 and my Onc said that it would do me more harm than help!!! Now on Femera and having a terrible time with pain!!!!! Not fun. Looking for a Natural Estrogen Blocker. I am on a mission so other women do not have to have this pain. I am 61 and otherwise in great health.
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Hi
My oncotype score was 20. Even though my tumor was 1.1cm ,stage 1, grade 1 er/pr+, her2-, with no lymph node involvement, my onc didn't even offer an option. He said because of my age(48) and the onco score he recommended chemo. He said the intermediate group is the gray area that they are still really not clear on how to treat. That there is presently a study going on to see if there is more benefit or not to treating this group with chemo and tamoxafen or tamoxafen alone. Unfortunately that study is not complete yet. So he said there is only one shot at a cure at this point after that if there is mets the only hope is remission after chasing it. That really hit home for me and as far as I was concerned the decision was made. I have since had my 1st tx (1/4/11) with cytoxin and taxotere. I felt like I needed to hit it with everything available for my peace of mind. I'd be lying if I said I didn't have concerns about long term affects from the chemo but for me I felt I had to deal with TODAY. I have to say once the decision was made and the appointment was made I never looked back and I felt peace . All the decisions we have to make with our dx is to me the hardest part. Then we just put one foot in front of the other. I hope you are doing well.
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Hi there. I have an Onco score of 21, which is low intermediate, but the onc is recommending chemo due to the fact that I have lymphvascular invasion. She has also told me that chemo will improve my recurrence probability by 3-5%. Pretty negligible in my eyes, especially since chemo only works on cells that are actively dividing at the time of infusion. I am Stage 1, Grade 1, so it is not an aggressive cancer and maybe they are not actively doing anything. The problem is that it has also been three months since my lumpectomy and time is fleeting - who knows if any of these cells in the lymph vessels have travelled. My onc is recommending TCx4 - I really don't want to have chemo - feel risks out weigh benefits for me, but am frightened if I don't. Sooo confused
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Hi,
I don't have any answers and I don't even know what my Onco score is yet. I will be meeting with the Dr. tomorrow and have a whole list of questions. I wonder if he told me I don't need chemo because I kept expressing my concern over it? Right before they put me out on the operating table for my BMX, the last question I asked him was "will I need chemo". I know only he can answer my questions, but when I read some of these posts, my cancer was similiar in size, grade and no lymph node involvement. Yet, many have chosen chemo. I am still worried even if I pretend I am not - I keep thinking very dark thoughts about my mortality even though it is extremely irrational.
Anyways, just rambling at this point.
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dcoffey ~ I have very similiar stats to you. I was diagnosed last Oct at age 43. My tumor was initially a Grade 3 from biopsy.. but the final pathology after surgery put it at a Grade 2. My oncotype score was 15 = 10% risk.
I agree with getting several opinions, do your own research and in the end.. YOU have to be comfortable with your decision.
Here's a simplified version of how I decided in my situation:
Things that would lean me towards chemo:
My "young" age, higher grade tumor, possible peace of mind?
Things that deterred me from chemo:
Clear margins, no nodes, no lymphvascular invasion, Onc recommended "no", wanted to avoid "possible" long term side effects from chemo, my tumor was HIGHLY ER+ so knew Tamoxifen was going to be most effective weapon of choice, I was already being pretty "agressive" by having a BMX, and I have made peace with the fact that nothing is certain ~ it may reoccur, it may not. I will not/do not regret the choice I made with the information I had at the time.
I wish you good luck, strength and most of all ~ PEACE~ with your decision.
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Slinky - good luck at the doc's tomorrow. Chin up, and make sure you ask those questions!
As for me, the rad oncologist phoned me today as I wanted his opinion on whether rad and tamox would be enough. He was much more "compassionate" than my chemo oncologist who had a terrible bedside manner. He answered my questions about lymphatic vessel invasion and told me my oncotype of 21 gave me a 15% chance of reoccurence in another part of my body. With the addition of Tamoxifen, that 15% would be brought down another 6% and the addition of chemo could (possibly) bring it down another 3%. Chemo, he told me though, was hit and miss. Not everyone in the low/intermediate 'grey' area would benefit - maybe 3 out of 100. So, question is, do I want to take that chance? Likely the vessel invasion has remained in my breast as my lymph nodes were negative. With that in mind, I feel much more comfortable saying no to chemo.
Wish me luck!
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ch08567, you might want to get another opinion about the rad oncs figures. The reoccurence score provided when you get an oncotype test presumes you will be taking tamoxifen for 5 years. To me, it seems like he added the advantage tamoxifen gives you to the recurrence score, in effect double counting it.
I think the 15% chance of reoccurence represents the chances of a distance recurrance if you take tamoxifen for five years.
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Thanks for the response, Lisa-e.
I am disappointed - thought it looked good there for a bit. I am just so wishy washy on whether chemo will help at all. If there was no lymph vessel involvement, my results would normally not merit chemo. Damn those unknowns! lol I am back to square one....I wish I could find someone who was in the same predicament and made the decision not to have chemo - I'd like to know if they are happy with their decision thus far. Same with someone who decided to take chemo. I am just going to have to bite the bullet and make a decision. Let's hope I don't regret it.
Thanks for the response lisa-e. Hope all is well with you.
Christine
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Christine, you could always flip a coin. I know that is a sarcastic response, but sometimes when you look at the stats there is no clear choice.
I've read that stats that chemo would decrease the chance of recurrence by 33% (relative to your chances of recurrence). So if you had a 15% chance of recurrence, chemo would reduce your chances of recurrence by 4.95% (15% x .33%). That brings your chance of recurrence down to 10.05%. But you have to look at chances of permanent side effects from chemo. My onc gave me a ball park figure of a 3% to 4% chance of permanent side effect.
Although I think my chances of recurrence are similiar to yours, my situation is different. My bc was multicentric (two tumors) with no definite lympphvascular invasion. I decided I could live with a 15% chance of recurrence. Chemo didn't offer me enough of an advatage to out weigh the chances of permanent side effects. So far, I think I made the right decision.
It is a hard decision. A lot depends on your tolerance for risk. Good luck in making your decision.
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eek, sorry for the formatting problems. I don't know what happened.
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LIsa-e - I also had two tumours within the DCIS (DCIS 4.8 cm, Grade III) on my left breast. They were both rather small - one .7cm (invasive microcapilliary), and the other 1.7 cm (invasive ductal). Both of these Grade I, as I have stated before.
I think I've made my decision and it is the same decision as earlier, just not completely comfortable with it yet. Don't know if I will ever be. I am going to forgo the chemo.
Thank you so much for pointing out the discrepancy with the onco type testing and percentages. Guess my rad onc didn't realize that the testing figures are with Tamoxifen (or other) taken into consideration. It does make a difference.
Take care,
Christine
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My Oncotype score was 18. My oncologist and breast surgeon did not recommend chemo. I had a large mass (4x6 cm) of lobular carcinoma in situ which required a mastectomy. Once the pathology was established, they found a .7mm of invasive lobular carcinoma. I had three lymph nodes removed and they were clean. (SNB). Margins were clear and far. There were ITC (isolated tumor cells) found in one lymph node but my breast surgeon was not concerned. I am taking Tamoxifen. I did all my research and I am at peace with their/my decision not to do chemotherapy. Both of my doctors agreed that chemotherapy would not be of a benefit to me overall. I am being treated at a NCCN teaching hospital in downtown Chicago and have been very pleased with my treatment & doctors.
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I went to the Dr., armed with a list of questions. He told me absolutely no chemo...no, no, no. My IDC was 1.2cm, grade 2, no lymph node involvement 0/7.
He told me if I do no further treatments of any kind my survival rate is 85%. With ovary removal (which I will be doing) add another 5%. Add Tamoxifen (I don't know if I want to take this) add another 5% to my life. I guess I seemed incredulous, so he referred me to a Dr who specializes in Onc. The Dr. that gave me the above info is the onc. surgeon.
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Thanks for the info, ladies
I had a lumpectomy, so I will still take radiation (have a positive margin), and likely tamoxifen. Good luck to all!!
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My oncotype score was 17. There was no doubt in my oncologist mind that I would get chemo despite the oncotype dx score being in the low risk category. I also had mutliple foci of cancer tumors throughout my left breast with DCIS too. I had three solid tumors. Also, given that I am 32, my oncologist felt it was best to go aggressive being young. I did meeet with another oncologist who said it was totally my choice. I really wanted to feel like I did everything to decrease the risk.
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Anyone out there with an Onco scre of 18 that did lumpectomy and radiation but no hormonal treatment afterwards?
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Hi Mini1
My score was 18. I had a lumpectomy, a re-excision because they found a bit more cancer in the tissue. I have post hormonal treatment, Femara, because my cancer is estrogen based. Maybe yours is not Estrogen Receptor Positive.
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No, mine is 90-100% ER+ and 10-15% PR positive.
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