Oncotype DX Roll Call!

You can add me to the roll call with an oncotype of 14.   Haven't decided whether to do chemo yet.  Cancer stats, if you need them, should be in my sig line.  TY!

Thanks Moody.  I see I had my oncotype score in my sig line wrong as 15.  It was correct in my post tho, as 14.  Also, so far I have had BLMX and am still in the process of making other treatment decisions.

I have reviewed the roll call and someone please correct me if I am wrong, but I only see two people who completed chemo with Onco scores of 17 or lower (hood1980 and ann-idiot, with scores of 8 and 11 respectively).  I'd love to hear from them as to their reasoning as pre-oncotype was sure I would do chemo, and now post-oncotype I'm really torn and feeling like any decision I make will be wrong.

samiam40--From what I'm seeing on the boards, the most common reason for doing chemo, even with a low Oncotype score, is that the person wants to feel they've done everything that *might* work, even if the chances of benefit are slight, even if they are outweighed by the level of risk. Which would bother you most--doing chemo, but suspecting that you are taking the risk and experiencing the side effects for nothing, or not doing chemo, and fearing that you haven't done enough?

I chose not to do it, and since my tumor is ILC rather than IDC, some of my reasons wouldn't apply to you. There are days when I wonder if I've done enough--I don't think anyone can escape thinking that occasionally, but then I go back over the evidence I had and I know it was the most rational choice for me. Whether or not it was the right one I will never know, since even after doing everything one can still have a recurrence.

samiam40: My advise to you is get yourself a 2nd opinion.

I decided to get a 2nd op about a lumpectomy and was told by the 2nd doc (a surgeon who ONLY does bc surgery) that I needed a mast - after the mast, pathology confirmed that I actually DID need the mast.

Also, my oncotype was 18. The 1st onc said "no you don't need chemo" but gave very little info. The 2nd onc said "no you don't need chemo and here is why" and proceeded to give me a VERY good explanation so that I had a thorough understanding, which allows me to rest a lot easier (although never completely as we all know too well). 

So in both cases, one where I got a 2nd and it differed, and the other where I got a 2nd and it confirmed, it was a very good thing that I got the 2nd opinion. Your insurance should pay.

Hi mary5454,

I should have mentioned - I had a lumpectomy initially; however the margins were not good - there was DCIS close to the margin. So as it turned out, the DCIS went all the way from my nipple down to my chest wall, so they wouldn't have been able to get it out with just another re-excision. Of course they may not have even known, after the re-excision, that they had not gotten it all out (what if they thought there was a good wide margin yet there was some DCIS just to the unremoved side of the good margin? There'd be no way of knowing. I think that's where the benefit of seeing a surgeon who specializes in breast cancer surgery really becomes evident.

JustSayin- Thanks for the reply. I did go to a breast surgeon -one highly recommned by my gyno-

samIam - my oncotype is 18 right in the "gray area" - my onc felt very comfortable with me not doing chemo - I did it because my friends and family were all saying - don't you want to do everything you can? As it turned out - I developed a bad case of hives after the first 2 treatments and stopped on my onc's  advice and went straight to rads and AI...Getting a second opinion is good advice - you need to feel comfortable...Your onc can also show you a risk/benefit table - i forgot the name of the website they use - my onc went right on plugged in my information and showed me.

Hi Everyone. Hi Moodyk. This is the first time I've ventured into this thread. I think this is a scary a$$ place!! I am waiting for my Oncotype score. Tick. Tick. Tock. Pathology from two hospitals played volleyball with my tumor tissue and so sending it to California was delayed. I admit I haven't spent alot of time in this section of the forum. Is it me or am I the only nutty one who thinks chemo is poison??? Help. I don't want to have to do this.

I decided to do chemo for my own piece of mind.  My onco said it was up to me, if i did chemo it would reduce me below 10% ( somewhere between 4-6% he said)  If i did not i was at 16%.  I just wanted to make sure i did everything possible, to make sure it does not return.  If i did not i would always wonder , if the cancer returned, if i only did chemo, maybe i would not have to go through this again.  But it is a very personal choice.  I respect each and everyones decision. It a tough one to make.   

Melissa:  I could whoop and holler at this fantastic "preliminary" news!  My heart jumped with joy so I can imagine how you must be feeling!  It just seemed too outrageous for you to have brain mets!! So what in the world DID they see on the MRI that would cause them to put those bejeebers into you last week?  Sheesh!  I will be praying for negative findings on the PET scan!!!  Thank goodness it is early in the week so you can get the results before the weekend....

Deborah

Justsaying--I did get a 2nd opinion from the head of the oncology dept and one of my local hospitals--very well respected.  I actually had it the day before I got my oncotype score back.  He is a strong advocate of the TAILORx study and told me, even then, that if my score were in the grey area, he would recommend joining the study.  He is also a fan of adriamyacin, which my other onco uses only rarely due to the cardiac issues.  So, if I really still feel unsure after discussing this with my main onco on Thursday, maybe I will seek out a 3rd opinion.

Jeanne--you have certainly been through the ringer these last 15 years.  I see you have now had a BLM.  Have you been tested for BRCA?  I have a very good friend who had BC twice b/f she was 38, so she was tested for BRCA even though she had no family history.   She ended up testing positive.  Also, she did chemo twice, just a different regimen each time.  Just some thoughts.  I wish you only good luck from here on out. 

My Oncotype DX score was 13, rate of distant recurrence 9% after 5 years of Tamoxifen.  I do have to wonder if my being BRCA2+  makes recurrence any higher.  No chemo.

I did ask my Onc my chance of recurrence and she just said,"You have the paperwork".   I guess I just wanted to hear it from her and I wanted to ask about the BRCA2, but didn't bother. 

I was on Arimidex, had bad se's and changed to Tamoxifen.

Doreen,

Yes, I have been thinking of switching Oncs for a couple of months.  I'm just not sure if I need a doctor to send me to one or if I just make an appt.  I could ask my BS, I see him again in June.

That's great news Melissa. 

Doreen, definitely get a 2nd opinion.   I've already had 2 and although I love onco #1, plan to get a 3rd if I still can't figure out what to do after meeting with her tomorrow.  You and I are in a similar situation (score of 13 vs. 14) and it is really a tough decision that requires a lot of attention and analysis from your doc.  If your bs will not refer you to someone else, try your ps or just go straight to the cancer dept. of the best local hospital in your area.  There is no reason to settle for a doc that won't take the time to talk you through what could be the most important decision in your life.

Melissa -  whew...  breathing a huge sigh of relief for you ... and so sorry you were put through all that stress!!!   I'm doing a happy dance for you for the all clear on the scans ...  that's absolutely fabulous news!!!!   Thanks for coming back to let us know ...  

Doreen 

Melissa!!! the most amazing news!!! I think Moody is right, wow the power of prayer never ceases to amaze me..........hugs to you!!