onco score 19 how can i decide??

I had a lumpectomy for a 1.2 cm tumor and a 3mm tumor, my Onco score came back 18 on the first tumor and waiting for the score on the second, my oncologist said chemo was my decision. For me, with only a 2-3 % reduction in a reoccurance, that wasn't enough of a benefit for the risks of side effects from chemo. She also told me if I were in my late 50's or later, she would not recommend chemo with my score.

Only you can decide if the risks outweigh the benefit of chemo. Best wishes in your decision.

Hi s3434 - I just met with my oncologist today, Oncotype and FISH tests just ordered.  Thanks for starting this thread, I am a few weeks behind you, but appreciate learning what is to potentially come my way. 

Lori

I had an oncotype score of 20.  I did get a second opinion, which I HIGHLY recommend, and both recommended chemo.  I had 4 treatments of taxotere and cytoxan.  Like others have said, doable.  The oncotype score is not the only thing they base their recommendations on, so be sure to discuss it completely with your onc.  (I know you will)

Something you said in your original post about the stress of going back to the BS every 3 months and the mammos made me reply to you.  My second opinion doctor told me to consider if I was the kind of person who, if I did not do chemo, would get worked up and worry every time I had to come back for a check-up, or if I could just decide and go on.  I thought that I would worry more if I did not know that I had done everything that I could to fight this.  That, and her discussion about distant recurrence, helped me to make up my mind.

Good luck to you whatever you decide to do.  

Chris (now 8 weeks out from chemo and not sorry) 

Hi ladies,

We all have breast cancer and that is where the similarity ends.  Each case is very individual as we all have learned or are learning.  We are sisters but we are not identical twins.

I discovered my lump in a shower last July 1st.  It was huge and I just knew it was something. Of course I go for my mammos regularly and they  have always been "normal".  You know the drill, radiologist says everything looks great, see you next year, and you leave happy to know you are free for another year.  DON'T BELIEVE IT!!! 

I went to my gyn the day following my lump discovery.  She sent me for the usual mammo and ultrasound.   Mammo of course showed nothing.  Ultrasound showed a mass.  Ok, let 's do a biopsy...............................we have a 3.5 centimeter malignant grade 3 tumor.

Ok, next step, lumpectomy and the surgeon thinks followed by radiation.   After the surgery, I actually took another couple of months to make my treatment decision.  I have a wonderful and gifted local onc, but I also went to Moffitt CC for a second opinion which has now proved invaluable with my two oncs consulting as my case unfolded.

First there was the oncotype..................score 17.   Test results say I do not need chemo, would not get enough benefit to outweigh the risks.   Only 9% chance of recurrance.  Yippee, Hooray.  Okay, not so fast.  I asked for a breast MRI just to check that all was well with other breast since this large tumor I had didn't show in a mammo even after we knew for sure it was there.  MRI for breasts are very sensitive.......................show every darn little thing.  Okay, now it shows something in BOTH breasts.  Surgeon and Onc (and radiologist) say better have biopsy, but probably nothing, there are lots of false positives with this test.  Oh no.............................. no cancer in the "good" breast, but another cancer site in the already diseased breast in another separate quadrant.  It is early stage, so they are still basing treatment on first dx.  It should be noted that this was a 9mm tumor that also never showed in any mammo.

In the mean time a second oncotype was done on the original tumor tissue because the first time it was done on the biopsy sample.  This time a score of 19, now my odds of recurrance have increased to 11%.  So with that and knowing that I had another cancer in the same breast I (with both oncs advice) went ahead with chemo.  Like so many before me have said, I never want to look back and say if only I had.............................

Finished chemo almost three weeks ago.  Yes, some annoying side effects, but very doable.  Started on the TC every three weeks, but severe hand peeling after tx 2 so switched to TAXOL given in a lower dose EVERY week for six weeks.  Next in the plan, on to radiation.  NOT SO FAST.

Breast surgeon makes an appt for 6 month post surgery checkup...............................the breast with two malignancies fine..............................some sort of lump in other breast.  How can this be happening.  He does not "think" it is cancer, let's check it again in three months.  WHAT???????????   Okay, now I ask to have breast exam form med onc and rad onc.  They actually concur.  Whatever it is, the consistency is soft and spongy and cancer is usually hard.  Rad onc pretty sure it is fibrocystic changes.  He is comfortable to just wait the three months.  Of course no guarantee that it is not cancer, but odds are with me and it wouldn't be any more threatening three months from now.

So I am moving on to my radiation journey.  I have had my tattoos, positioning and dress rehersal.  My 35 sessions start Monday for seven weeks.  I take time to make my decisions.  I ask lots of questions and do a ton or research until I am comfortable, or at least at peace.  I do not look back, knowing each decision I have made is what I feel is the best for me and my outcome.

I know this is a ridiculously long post, but since every story is different, I just may be reaching someone who has something close to mine and maybe they can find some info and solace in reading this.

I have found we are all so much stronger than we ever imagined and..................projecting and anticipating are a waste of time and energy.................every step so far has been easier and more doable than I imagined.

WE CAN DO THIS!

Caren

S3434:

My onco score was 20 with a recurrence rate of 13 and I also did 4 rounds of taxotere and cytoxan.  If your tumor was a grade 2, then it is in the middle as far as aggressiveness.  Chemo is very doable.  I swam, walked 2-1/2 miles almost every day, only had a few bad days per round of chemo, it's sometimes about preparing for and managing the side effects.  I never had nausea.

I would go for it.  You sound like you will be anxious anyways.  Hopefllady had some good advice.  My onco initialliy just said radiation but changed her mind to pro chemo after my oncotype test.

Peeps

s3434,  The long term possible side effects would depend on what type of chemotherapy you would have.  As with so much of the treatment, everyone does not get the same type and each comes with it's own risks.   

I think that you will have to talk with your oncologist first and if chemo is recommended then find out what type and research it from there.  We will all be able to help more after you know.

Chris 

s3434-- My oncotype was also 19, and I had two opinions, including one from a major breast cancer center. Neither of them recommended chemo, so I didn't do it.

I had a score of 19 as well and had two oncologists recommend chemo (one from Cleveland Clinic and the other is here at our Regional Cancer Center), which I'm finishing up this week.  Sandy, as I have said, you have do to what you can live with!  I'l lbe thinking of you tomorrow!