Anyone with an intermediate oncotype?

All of you who had the oncotype test done have higher scores than I have. My score is 11. I did have node involvement although it was a micromet in the SN. This was discovered after my lumpectomy. When my BS received the Path report he called me and said that was going to get me chemo. Naturally I was upset. My ONC was undecided about treatment because even though the report showed some node involvement the tumors were smaller than first thought so it was her decision to have the test done. I am glad she did. We got lucky because insurance paid for it; had they not I probably would not have had it done. She said a lot of ONCs were using the test as a barometer for treatment because women were being overtreated. Not only was my score low but the cancer was deemed nonaggressive. It is no longer the case that node involvement denotes chemo. Depends on the size and type of cancer. However, had the tumor in the SN been large maybe my treatment would have been different. As it is I think I am going to proceed with radiation. A score of 11 means less than 6% chance of recurrence. I am concerned because my tumor is in my left breast which is right over the heart. There are side effects to chemo and radiation but at the end of the day it is our lives so we may the call.

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My score was 24.  small tumor, stage 1 grade 3 (haven't seen a lot of grade 3's here) ER+ PR+ HER2-  0/6 nodes 16% recurrence rate.  My oncologist says a 6% benefit from chemo, my medical oncologist, surgeon and radiation oncologist all say the benefit doesn't out weigh the side effects.  I am so unsure, I mean 6% benefit isn't a lot but it is something.  Medical oncologist left it up to me, he has a plan just incase. I have been mapped out and marked for radiation and set to start next Wed.  HELP!! 

Turns out the back pain was a muscle spasm and had nothing to do with the chemo.  As soon as I took the muscle relaxers, I felt good again.  So, far no SE have started.

My score was 18 - the low limit of the intermediate range.  It translates to chemo adding an additional 3% of protection on top of Tamoxifen/Arimidex so I've opted for no chemo with my oncologist's whole-hearted agreement.  Just started Arimidex a few days ago so my fingers are crossed that I won't experience intolerable side effects.

My Onco score was 20 and onc said chemo not necessary, but I'm 73 years old. I'm sure it's true that for younger, pre-menopausal women it's usually considered safer to go for chemo. Also, the Onco tests are based on women taking Tamoxifen and I'm taking Arimidex, which supposedly has a slighter lower recurrence rate for my type of cancer and age group. According to the onc, my recurrence risk is only 1 in 8, would have been 1 in 4 without Arimidex. I would have been a basket case if chemo were recommended because I want to be focusing on buildling my immune system, not tearing it down. But I would have followed my onc's advice. Tough decisions, each one very personal, and I do believe that our attitude counts. So if someone believes she'll be healthier without chemo, that attitude alone can make a difference.

Thank you so much for starting this topic. It's very timely to me as I got my OncotypeDX score of 21 yesterday. I won't have a chance to discuss the results with my MO for a whole week. I'm going to read through your responses to help prepare for our discussion. 

Something jumped out at me as I scrolled through the 77 responses. There are a lot more ILCs here than I typically see when reading through posts on this board. Since only 10% of BC is ILC, I have to wonder if ILC tumors represent a larger % of intermediate scores. Then have to wonder what this means for those of us with ILC who are making decisions based on this test.

TinaT - Thanks for the note.  It will certainly be a question for the MO.

I also have extensive LCIS which remains after the ILC was removed with wide clean margins.

Is there anyone out there with LCIS, ILC and an intermediate OncotypeDX score?

Did you get any advice that the LCIS should be factored into the chemo decision? 

Many thanks for any input. This week-long wait is a challenge for me. I'm 6 weeks out from surgery and heard the sooner radiation starts, the more effective it will be.

TinaT: Thank you for the information which is actually very helpful as it sounds like no one suggested that you should do chemo based on the presence of LCIS when you were discussing your intermediate OncotypeDX score.

Yes, I went with the lumpectomy and will be having radiation. Only open question is chemo.

Thanks so much for your input!

cookiegal, I have a friend -- now in her fifties -- who refused chemo at just a few years older than you because she wanted to have children and, at that time at least, the chemo would have made that impossible. She's since had a recurrence, after having two daughters, and did follow the onc's advice that time. Important to note that doctors give a prognosis based on their best knowledge at the time. What is not usually factored in are the lifestyle and beliefs of the woman being diagnosed. This woman was twice given what I call a "Voodoo Verdict," meaning "You only have ___ time left." Now they call her "the Miracle Woman" because they can't scientifically explain how her deep religious beliefs and prayers have kept her healthy. I know of another woman who refused all medical treatment and is relying on diet, acupuncture, and meditation--I believe she will stay healthy, too. My own beliefs are positive, but not quite that strong, so I did agree to bilateral mastectomy, but I would have been a hard sell for chemo. Blessings to you.

GabbyCal:  All the info is pretty overwhelming.  Just when I think I've got it all straight in my head I think of another question.....then I think, "Have I already covered this territory and I've just forgotten the answer?".....then my mind moves on to something else.  Yikes!  I think we all feel the pressure to absorb as much as we can as quickly as we can so we can make our plan and keep things moving along.

I'm still trying to figure out the results of the Oncotype DX results.  I'm trying to wrap my head around an 11% recurrence rate when I had a mastectomy and negative lymph nodes.  Does the test take into account that I had a mastectomy or is it simply analyzing the tumor?  More questions for the oncologist...... 

TinaT: The OncotypeDX just looks at the tumor.  In the fine print above the ER+ section, it says that it factors in the ER+ score as part of the recurrence score. It also says that the score is based on 5 years of Tamoxofin (which I figure is now interpreted to mean whichever HT makes sense).

The other thing to factor in that confuses me, is that I think the OncotypeDX score is telling us the % chance that the specific tumor which was tested will recur in a different place in our bodies over the next 10 years. (When they refer to "distance recurrence" I think it means recurrence in a different part of your body.) 

Does that mean, we actually have 2 recurrence scores, one our % chance of developing more breast cancer and another for this specific cancer spreading someplace else? 

kira1234: We've got a lot of notes floating around which can get confusing. I'm doing lumpectomy+radiation and had on OncotypeDX of 21 (13% recurrence).  Thanks for joining the discussion. Any more light you can shed on this is most appreciated!

Marybast...Okay I am confused how can the oncotype test be based on a drug you havent even taken yet? My test score was low but my oncologist hadnt decided until after the score came back which one I was going to take? So my test score is not entirely valid because I am taking Arimidex instead of Tamoxifen? Dont understand that.