treatment desicions for oncotype score of 20

daisydoo100

Hello, I am new to the group and I am really hoping for some opinions/advice on what others have chosen to do in my situation. I am stage 2a ER/PR+ and her2- and my oncotype score was 20. I am due to start radiation on July 7th but some days I just don't feel comfortable with my choice not to do chemo. 

mdg

This is a hard decision.  I think many things go into making the decision.   I had an oncotype of 17 but I also had lymphavascular invasion which scared me.  I also had a 4 year old son when I was dx and was in great health (other than the BC of course!).  I also have a very type A personality and worry a lot so for me it made sense to do chemo. 

The one thing I asked myself is could I live with myself if the BC came back and I had not done the chemo.  I knew with my personality I could not especially since my son was only 4.  There is no right decision....only the right decision for you personally.  Many people with the same dx may choose different treatment paths based on things other than pathology. 

Good luck!  You will make the right choice....

 

Moderators

Welcome to the BCO Forums daisydoo100. It is never easy,especially with the limited time to research and get your mind round options. You will get some wonderful feedback here on what others have done in similar situations. Read all the quality articles you can find (Please be aware of the range of web article sources as there is a lot of mis-information out there).

It is a very scary and emotional time and most are only too aware of the horrible 'waiting' periods and the difficult choices you need to weigh up. You are in the right forum for quality input.

We hope that you make the right decision for YOU and you obtain the best result possible.

The Mods

aquafit2

Hi there. I am new to this site, was recently diagnosed myself in May. Very similar to daisydoo100; stage II, hormone +, Her 2 -, lymph node-, Oncotype score of 24.   I too have been struggling w/the decision to have chemo based on that score, which honestly scared the crap out of me. Based on things my dr.s had told me to that point, including that I probably wouldn't need chemo, I wasn't prepared for a number that high. I was really numb when I heard that cuz I had already done some research and knew what category that put me in for recurrence (The middle, or moderate risk). I'm not convinced chemo would be worth it and am going to get a second opinion and learn more about my type of cancer before I decide on chemo. And I'm glad I have the time to do that. Lot's of people have told me don't rush into it and regret it.  Especially in my case, where chemo may not be beneficial. The rate of recurrence with and without chemo are so close (only about 4% difference), I'm really struggling with it. And  have struggled discussing that w/people because they make assumptions and think it should be a no-brainer decision for me to go through with it. Well, everyone has their own reasons and apprehensions. Some of mine are not what you would typically hear. So good luck to everyone else that is faced w/this decision. It's probably THE most difficult one I've had to make.

Moderators

Welcome to the BCO Forums aquafit2. It is a very important decision - both short and long term. We hope you get some wonderful feedback here to assist in your decision. 

It is a very scary and emotional time and the 'waiting' is hard but, as you said, gives you time to research your options.

We hope that you make the right decision for YOU.

The Mods

MomtoIrishQuads

MDG and Aquafit,

I admire you both for breathing and taking the time to make a decision.  I haphazardly made a decision and I'm regretting it.  I am an oncatype 21, Stage 1/grade 3.  

Part of it is that I didn't ask enough questions and didn't do enough research.  For instance, I really wish that I had read other women's experience on this board.  I wasn't given the exact number difference between chemo and not (just the graph - and when I looked at it last night, it looked like it was about a 3 or 4% difference.  My current oncologist offered me no guidance and kept saying that it was completely up to me.

When I got a second opinion (over the phone, not a formal one) from my former oncologist in CA he said to the do the chemo as an "insurance policy" in case I couldn't tolerate the AI's - so I proceeded.  I wasn't well informed about the potential side effects and severity.  I knew that I would likely lose my hair - but not much else.  I was told that TC was relatively easy compared to other types of chemo.

So - I did my first treatment last week and I was very ill.  My husband nearly took me to the ER a few times.  I had muscle spasms, heart pals and every other side effect that you read about on these boards.  A week later - I'm just now feeling halfway decent.  Had I known the severity of my reaction, then I don't think I would have opted for the "insurance policy".  There are other ways to decrease your risk, in my opinion - in my case, losing weight (which estrogen lives in) and leading a more active and healthy lifestyle are top of my list.  

Some people breeze through chemo (I read about someone on this board that only had some mild acne)....but as someone pointed out - if you have a reoccurence, will you kick yourself?  And are you prepared to go through the side effects?  These are important questions that I wish I would have considered.  (btw, I've decided not to complete the rest of my chemo treatments).

There is a study that is being done right now to help us "middle range" folks that should be out next year (won't help us, I know).... 

daisydoo100

Thank you so much for your response. I was staring to think there wasn't that many out there like us with the "inbetween" score. I am so sorry your going through all of that. Hopefully now that you've ended the chemo you can start to feel better.I wish there was more info out there for girls like us. Hopefully when the study comes out it will help women make a easier decision then we had.

jetgal23

So glad to see this topic since I'm with you.  I'm in the middle too - score of 21 and now getting a test called Mammaprint which is for those of us in the middle.  I'm getting treated at a cancer research center so I'm participating in a study as part of it, but we had to wait to get it officially approved because 1) they needed to make sure they had enough tissue to test (I've already had the oncotype tissue done 2x since the orginal piece wasn't big enough!), and 2) will my insurance company pay for it.  Fortunately I'm good on both so the test is underway.  My mom had BC 15 years ago (at age 60, I'm now 52) and had lumpectomy and radiation.  She took tamoxifin for a short time since she developed a blood clot, so I'm already worried about that phase.  But its frustrating to have to wait but I want all of the info I can before I make this decision about chemo first - which is what the Mammaprint does.  Apparently it looks at several genes because there are many of us who score in the middle (something like 40% of oncotype test takers). And I fit all the criteria for these tests - tumor 1.6 cm, ER/PR+, HER2-, all nodes negative (margins were clear). I'm trying to see if anyone else has had this Mammaprint test...

Golden01

Your decisions are hard ones to make. My Oncotype was 27 and I ended up deciding not to do chemo after a second opinion at the National Cancer Institute recognized research center in my state. I saw the head of their breast cancer programs and she recommended against chemo for me and explained that the Oncotype was just one piece of information, so for me, other factors weighed in her recommendations. My MO had recommended chemo. He supported my decision after the second opinion. What also helped me a great deal in making the difficult decision on what to do was the chart on page two of my Oncotype report (it's been three years so the reports may have changed). It was the the chart for "Node Negative, ER-Positive Breast Cancer Chemotherapy Benefit". For us in that dreaded intermediate category, the standard deviation for for the recurrence score was quite wide. The truth was, for me, that until the results of the TailoRx trial is done, we wouldn't know so I found I had to get as much information from the best experts I could find and know that I made the best choice for me with the information available back in 2011. I think the TailoRx results are expected next year, way too slow to be of help when I was making these tough decisions. Here's the link to the TAILORRx trial info: http://www.cancer.gov/clinicaltrials/noteworthy-trials/tailorx . Good luck as you make these hard decisions. Remember to breathe. 

LW0919

daisy do:  my diagnosis was identical to yours.  My onco score was 20 also.  It was unbelievably hard to choose to do chemo.  The tumor board was split 50/50 on my case.  If the professionals can't decide, you know it's a difficult one to call.  My MO said it comes down to a basic decision of who you are and how you live your life.  If you are ok with taking some chances and feel comfortable with it then skip the chemo or if you are not a risk taker and will always wonder and feel uneasy if you don't do chemo, then do it for peace of mind.  I went the conservative route as I am not much of a risk taker and chose to do chemo.  It really is do-able.  It's not fun but isn't as bad as I thought it would be.  I think he Neulasta shots were the worst part of it all.  Just do what you feel you would have the most peace with.  Good luck to you.