HELP! Oncotype

noonrider

I was diagnosed on 3/21 with IDC. Stage 1a, grade 2, ER/PR+, HER-, clear margins and nodes. Lumpectomy and SNB done on April 2nd. I cannot take Tamoxifen because of stroke risk. I'm not scheduled to meet with my oncologist until May 9th, but today I got my oncotype results back. 

WHY WHY WHY do I have to be in a stupid gray area group??? My Oncotype was 18. Top end of low risk or bottom end of intermediate risk, depending if you're a pessimist or optimist I guess! 

What were your numbers? Anyone else on the low end of this intermediate group? I don't know how to make this decision and I know its basically a coin toss. I'm leaning toward just having chemo. I have 5 kids with Down syndrome at home and I don't ever want to deal with this again. (as I know nobody else does either!) I feel like I need to hear from others what they did. 

HELP!

jeb1959

Hi,  I was diagnosed four years ago.  You can see my stats below.  Oncotype of 17.  Struggled with my decision about whether or not to do chemo because I had a sizable tumor.  No chemo was my decision as the benefits, in my case, did not outweigh the risks.  I did radiation and am on Tamoxifen.  I believe the Oncotype assumes you'll take Tamoxifen for five years.  If you cannot take it, perhaps you should ask how your distant recurrence rate changes.  I had just turned 50 and was pre-menopausal when diagnosed in 2010.  Good luck - these decisions can be very difficult.

noonrider

Thank you. Yes, I am just turning 47. I don't have my full report so I don't have my actual recurrence score, just the oncotype score. I will get that. 

mdg

I was in a similar situation....my score was 17 but I also had LVI in my pathology.  My son was only 4 at the time of my dx.  It was the most difficult decision I had to make through the whole BC process.  I did end up choosing chemo and I used cold caps to keep my hair.  I am glad I did the chemo.  I have no regret.  Good luck as you make this most difficult decision.  Hugs!

noonrider

Ok, I just talked to the doctor because I didn't have my recurrence score. So my Oncotype is 18 and recurrence score is 14%. That is assuming I'm taking tomoxifen, which I can't take. Got my appointment with MO moved up to May 1st. I wish this were cut and dry.

momand2kids

these are hard decisions.  I think you need to have your doc go over the score and the recurrence score with you in the office.  You should also ask "if I were your sister, what would you recommend?"  My oncotype score was higher, which was a surprise to everyone- and my surgeon and my onc, both of whom I respect greatly, said that if I was their sister, they would recommend chemo.  That was all I needed.  At the end, my % risk was about 7%, which I could live with.  I also could not take tamoxifen, so I took and AI and lupron.  

If you still don't know which way to go, get a second opinion.  Chemo is not easy, and there are some who say it is not effective on all types of bc--but this is about you..... you need to decide whatever is going to give you peace of mind and the best chance.... it may be chemo, it may not.  Some argue, as does my onc, that the hormonal therapies are the strongest weapon in the arsenal..... see what your onc thinks.

Good luck

jeb1959

They should be able to tell you all of your statistics - with/without chemo, etc.  The Tamoxifen caused problems with my uterus and lining and I needed a hysterectomy this past winter after three D and C's over the last few years.  I decided to also have a BSO at the same time to eliminate the little estrogen that my ovaries were still producing.  I have a long history of reproductive and other cancers in my family though am not BRCA positive.  The genetic counselor I saw thought it was the right decision as did all of my doctors.  For me, that BSO decision was another hard one up until the day I had the surgery.  But, so far so good.  I had a straightforward, predictable recovery.  It's harder for younger women who have not yet gone through menopause than those of us who have and know the side effects.  I've seen some women here who have had the BSO when they cannot take the hormonal therapy.

LovebeingNana

It really is such a personal decision. My Oncotype was 21, so I had the choice to have chemo or not. I did what momand2kids suggested and asked "what if this was the test result for your wife, what would you suggest." He said he would suggest chemo. My tumor was also grade 3 with a high ki67 so that helped me make my decision. I just finished my first round of chemo and I will say it is no picnic, but I know  down the road that I can be sure that I have done absolutely everything I could, and that is important to me. 

littlechicken

lespring,

My stats are very similar to yours.I just received my oncotype score a couple weeks ago- it was 17. I also had some LVI present. I chose not to do chemo, since it would not likely benefit me. My MO was in agreement. I didn't want to risk any permanent side effect from chemo if it didn't change my odds. I read somewhere that the mammoprint test is similar to the oncotype, but has no "intermediate" scores. Maybe you could have that test done.  Best of luck to you.  You're not alone.

littlechicken

lespring,

My stats are very similar to yours.I just received my oncotype score a couple weeks ago- it was 17. I also had some LVI present. I chose not to do chemo, since it would not likely benefit me. My MO was in agreement. I didn't want to risk any permanent side effect from chemo if it didn't change my odds. I read somewhere that the mammoprint test is similar to the oncotype, but has no "intermediate" scores. Maybe you could have that test done.  Best of luck to you.  You're not alone.

MsPharoah

lespring, I see that you are unable to take tamox.  (Sigh)  Anti-hormonals are definitely a home run for ER+ like us; more so than chemo.  I know this may be a hard discussion to have with the doctor, but post menopausal women are able to take aromatase inhibitors (AI's) which studies show to be even more effective than tamox.  Perhaps forcing you into menopause with Lupron or an ooph would make sense and make you eligible for AI therapy.  I know that doesn't sound good, but might be an option, especially if your chemo benefit is low and you can't take Tamox.

Good luck to you.  There are no easy decisions but don't look back when you make your decision.  It will be the right one!

Love, MsP

keepthefaith

I had an onco-score of 21. I decided to do chemo. I felt that I had to do what I could, while I could. Chemo wasn't too bad for me. At least not as bad as I had imagined! You could also ask your MO to see about doing the mammaprint test also, since you are in the gray area. It is similar to the onco, but tests more genes. Of course, you would have to wait a couple more wks to get those results. I didn't do the mammaprint bc I thought it might make it more confusing...just thought I would let you know about it.  Good luck with your decision. Bottom line, do what is best for YOU!

edwards750

lespring...bless your heart girl - 5 special needs children; you are such a saint. I have a nephew with CP. His parents have 3 other children as well. I had the Oncotype test done too. My score was 11 with an 8% recurrence rate with 5 years on Tamoxifen. Actually I started with Arimidex but because it attacked the bones my ONC switched me to Tamoxifen. I have osteoporosis so it made sense to make the switch. Obviously I didn't have to make the decision you have to so I cant say for sure what I would have done if my score had been the gray area. On one hand I would be afraid NOT to take chemo but I would also evaluate how much that treatment would be worth to me in terms of percentages. There is no exact science about the benefits but we all know the risk and discomfort(to say the least) with chemotherapy. Whatever you decide to do make it your decision and don't look back or second guess yourself. There is no wrong answer when it is your call - which it is. I think I would probably get a second opinion. Good luck. Keep the faith and keep us posted. Diane