What was your ONCOtype dx score

nic42

I am newly diagnosed  with ILC, ER/PR +, Her2 -, stage 1, grade 2, BRCA2 uncertain, 1.2 cm tumor. I am waiting for my Oncotype test to help decide my treatment. So far I have had a lumpectomy with 1 lymph node removal (clear). I am undecisive about a bilateral masectomy or lumectomy with radiation maybe  chemo. I know its a personal decision but it would be helpful to read what others have done with their onco test scores. I am very overwhelmed with emotions but I am VERY grateful to have this site. So thank you in advance for your responses.

Sincerely, Nicoletta

TokyoSing

Hi, I had ILC, stage 2 ( 2.1 cm tumor) ER/PR positive, HER negative, BRC 1&2 negative, Oncotype 14. No chemo, have been on Arimidex for 13 months now. I opted for a single mastectomy mainly because my tumor was in my left breast and I did not want to risk having radiation treatments so close to my heart. The mastectomy was very do-able.  I started gentle exercises as soon as the drains were out and at 6 weeks, I was back on my yoga mat!  

SeasideMemories

Nicoletta,

I had posted a link to some information here that may help you but, the link didn't work!

Please see my post below with directions as to how to find the thread where lots of people posted their Oncotype score and what treatment they chose to have based on that score.

Hope this helps!

edited to remove broken link!

mymountain

The above link didn't work for me.  Don't know if it's me or my computer.

 it's an overwhelming time when you are first diagnosed and trying to figure out a whole new world where bc takes center stage.  I didn't make any decisions until I recieved my score, and  I was an 11-no chemo.

  All the pieces of the puzzle are put together, including the oncotype  and you make the decision that you hope will be the best for you.

Please don't make a surgical decision out of fear, and until you have had at least two opinions and have done some research about all available options.   You will reach the right decision, just give all of it some time to sink in.

SeasideMemories

Oh Shoot... It doesn't work for me either! 

To find the thread do a search on.. NEW Oncotype Dx Roll Call Thread.  You should be able to find it that way!  It's in the Chemotherapy - Before, During and After Forum. 

Sorry about that.  I will edit my orginal post to remove that link!

momand2kids

Hi

we have similar stats-my oncotype was 27--intermediate-- I had a lumpectomy and 4 rounds of chemo and radiation--about 2.5 years out and doing fine!

300beacon

 I had a mass 4x6 of LCIS, hence, a masectomy. When the pathology was read, there was a   .7mm ILC  tumor in the middle of the mass. Given the size of the LCIS, a masectomy was the best choice. I really did not find the recovery difficult. I had TE, nipple reconstructin and tattoo.  

My Oncotype score was 18. I am taking Tamoxifen. No chemo. It was a difficult decision but my doctors believe it is the best for ME.

sgreenarch

HI. I know that you must be feeling overwhelmed and wondering how to make some of these decisions. The decision to have a mx (unilateral) rather than a lumpectomy was made for me since the MRI (following the mammogram which found tumor #1) found an additional tumor remote from the first one. Two lumpectomies in one breast would have left me with a very mishapen breast and at that point I was also skittish about ILC being multifocal and there being more brewing in that breast, since they already found two. Having a mx is not an easy decision, but one slight advantage was that I didn't need rads. My oncotype was 17 and I was advised specifically against having chemo. Ironically the idea of NOT having chemo scared me, like perhaps I wasn't doing enough! I went and got two more opinions who concurred adamently, one even saying that chemo would be an out and out bad thing to do in my situation. Not enough benefit vs the potential harm. So I am taking Zometa 2x a year IV and am on tamoxifen. Good luck with your decisions.

IllinoisNancy

I was dx the first time in 2006 and my tumor was pleomorphic ILC, 1 cm, clear nodes, ER+, pr-, Her-,  My oncotypedx was a 9.  I had a lumpectomy, rads and tamoxifen.  4 years later the PILC came back to the same breast in the same area and in addition to that it showed up on the breast skin.  I had chemo which made the skin spots go away however I just had a BMX and the path report said it still showed ILC in the bad boob.  I hope and pray the BMX has removed it along with the surgeon removing as much breast skin as she could from that side.  I have been healing very slowly on the radiated skin and going in for a second surgery in two days.  The onco said no chemo and I listened.  The oncologist ordered the strongest chemo this time and followed it with the surgery.  I don't know why it came back but I feel like the onco failed me.  Some say it predicts the recurrence of distant recurrance however mine was a local recurrence.  I wish I would of had a mastectomy the first time instead of a lump with rads.  Just wanted to give my opinion and let you know that even low onco scores can have recurrences.

nic42

Thank you for all your responses. I am still waiting for my score. I was supposed to find out last week but the pathologist didn't send the request in when the Onc requested it. I have been so sad, angry and depressed ever since. I just want to get started on putting this behind me. I jump everytime the phone rings, hoping its the doc with the score. Anyway, thanks again and I will hopefully be able to post by the end of this week with a score.

Sincerely, nic