if you were/are in chemo grey zone what resources help?

Lili46

I was also in the gray area with my oncotype score-19. My original plan was lumpectomy...I had a very small tumor...and radiation followed by tamoxifen (I was 46 at time of diagnosis). However, when they examined my sentinel lymph nodes closer they discovered a couple of micrometastaes in one node. At that point it wasn't a question to me anymore. I had the rest of my nodes removed and examined...all negative. I felt that if the cells were in one node they were on the move and I wanted to hit them with all that I could. I finished TC almost a year ago. It wasn't awful for me. I have had poker straight hair my whole life and always wanted curls. The upside of chemo was I got my curls and I am having so much fun with them! It seemed like chemo lasted forever as I was going through it but now it seems like it was a lifetime ago. It was like childbirth to me, I forgot the pain once it was over. That said, you do have to do what is comfortable to you.

I am interested in the ki67. I knew nothing about this at the time of my diagnosis. Is my understanding right, that you can call oncotype for this information or do you need to get the pathology slides of your tumor and nodes and have them looked at again?  

cookiegal

lili thanks for you experience!

I'm in a pretty similar boat, my tumor was a little bigger.

the KI67 was on my path report, it is one factor that makes up the oncotype, which I did not have yet.

Lili46

Thanks Suz. I'll have to pull out my path report and see what it says. I'm curious now.

cookiegal

Living Beyond Breast Cancer has an interesting treatment guide. I think the section on oncotype is a little out of date, but there are some good ideas in it that I have not seen pulled together in one place.

You can download it or buy it.

cookiegal

Well when I started this thread I was so hopeful I would end in the low zone, but I am 22, grey as can be!!!!

 It seems like from the role call about 1/3 of 22's did the chemo.

scareds

Cookigal,

Just read your post. What did you ever do about chemo? I had an Oncotype of 21  (but my 2nd time around with breast cancer.) I chose chemo. Don't regret ir--the hair thing ws hard but not horrendous!

Hope you are well. Pls. Let me know!

C-- 

cookiegal

I did not. I finish rads on Tuesday. I know I made the right choice for me, but I still look back sometimes. I feel for anyone dealing with this!

cookiegal

bumping for new ladies

Marion

My oncotype score was 21.

I had decided, even before getting the results, that if I was in the "grey area" I would do chemo. My oncologist left me the choice (he was very concerned about my fertility. I'm only 33, newlywed, no kids) which I thought was weird because I also have a 0.8mm micromet in one sentinel node. After I told him I wanted chemo, he said it was the safest thing to do. I wanted a second opinion, so I saw another oncologist who told me that he always recommended chemo for young women with an intermediate score.

The only things that helped me make up my mind about chemo were : - having 2 oncologists agreeing that chemo was the safest option for an intermediate score.

- logical thinking. For me, the maths was simple: intermediate oncotype score + micro met = chemo. 

Spirituality, friends' opinion, etc. did not play a role in my decision making process.

My reasoning was: Better safe than sorry! 

cookiegal

Thanks for posting! I love hearing how people made their decisions. It would be great if we can keep this thread fresh!

horsedoc

Marion,

I'm glad to hear your decision because your situation is similar to mine.  I'm a tad older at 37, also no kids and I guess I never will have any now but that's ok.  Who knows, maybe I'll end up with step kids someday.  Anyway, my oncotype score was 16 which is the high end of the low risk range, but my med onc said that because of my age and the size of my tumor she would fully support my decision to have chemo.  I had a high Ki67 which worries me, plus multiple areas of DCIS besides the IDC tumor, and the part of my left breast that they took with the reduction had no malignancies but had areas of fibrosis.  My mom is a nurse (in another state) with BC patients, and the onc she works with also agreed that in my case chemo is a good idea.

As someone mentioned in another thread, "how would you feel if you had a recurrence" in regards to if you had done different recommended treatments, and that is another good way to look at it. Everyone has a different comfort level.

Marion

Hello horsedoc,

Me too I have given up on having kids!

I'm supposed to be on tamoxifen for 5 years and not get pregnant during that time. By the time I'm finished with tamoxifen, I'll be close to being 39. With my husband, we decided that not having kids was the right decision for us. It was not even hard to come to that conclusion.

Regarding your decision to do chemo, I think a lot of young women with a low score like yours would choose not to do chemo! Like you said ("how would you feel if it ever came back"), you won't have any regrets if it ever comes back, you'll have done everything you could. That was exactly my thinking too!