Low oncotype DX score... chemo or no chemo??

JuJuBeez said:

Hi Janet!
Our cases are very
Hi Janet!

Our cases are very similar. I was diagnosed with IDC on 3/29/10, when I was 43 (my daughter was 7 at the time). I was Stage 1, Grade 2, ER+ PR+, tumor was 1 cm. I had lumpectomy and sentinel node biopsy, node was clean and margins were good. I had the BRCA test and it showed no mutations. My oncotype score was 12. My onco did not recommend chemo for me because my score was low. He said they typically recommend it when it's in the middle scores (20s-30s), and definitely do it for the higher scores. I had partial-breasat radiation 2x/day for 5 days on the B39 trial study program. I started Tamoxifen in August.

I think the 'nest of smaller non-invasive tumors, and the mutation on BRCA 2' is what makes the big difference in the treatment of our cases.

It's hard to 'decide' when there is a 'choice' for chemo. I decided not to do it this time, but if anything comes back, I would be much more aggressive. After reading some of the posts here, I know I will question my decision if anything does comes back. If I had done chemo last year, would I have another issue. I based my decision on fear, to be honest. I was scared at the thought of going through chemo at that time. My husband's father had surgery for lung cancer a week after I finished radiation, and my husband was out of town at the hospital with FIL for a few days a week. My FIL was in the hospital from July through the end of September. I felt that if I went through chemo treatment, my husband would feel like he had to choose who to be with, and I didn't want that to happen. I didn't feel like I was fighting for my life like my FIL was. He passed at the end of September. Today, I know I would probably choose the chemo to be sure I did everything I could to get rid of it. It's definitely a lot to think about.

Best wishes to you. Please let us know what you decide and how it goes.

Julie

Here's a stupid question:
Can you change your mind down the road? I simply never thought about this before. Everyone gets chemo right away, but what if you are undecided? If having or not having chemo is up to you, how long do you have to make up your mind? Can you decide you want chemo say 6 months to a year after diagnosis? I assume it's optimal to do it early on, but what if you're really on the fence and then you're not?

Suzanne

Decisions, Decisions, Decisions
I know that there were times when I wished that someone could tell me what to do or I could somehow see down the road, and the results of making a left turn, right turn or going straight ahead. Unfortuntely, there are no easy answers. My oncotype Dx score was 22, but I am 57 and had a skin sparing mastectomy of the left breast in January. I was told that my score meant that I had a 10% likelihood of a recurrence of cance in 10 years and chemo would that likelihood by 1-2%. I decided not to have chemo. The bottom line is that you have to do what feels right for you. I am a Christian woman and I am trusting God for my 10%. If I have a recurrence, I will deal with it. One thing that I have found out about myself, I am stronger than I thought I was and times when I am, not God carries me! Meditate on what to do..you will know. Blessings.

I had my first onco visit
I had my first onco visit today and he is just now preparing to send off my pathology for an Oncotype. So, I have not reached the point where you are yet, but I can tell you that he told me if I have to have chemo (I have same stats as you except mine is grade 3) it would be taxotere and cytoxan are by no means a picnic, but he described them as one of the less rigorous treatments and very doable. He told me I would probably even just need to be off on a Friday for treatment and probably be back to my teaching job on the following Monday each time. So, just something to consider if she is pushing chemo for you.

Nancy

Similar situation
My situation was very similar except that my Onco score was 31. Up until that point my onco and I were not going to do chemo but with a 31 score she reversed her opinion and I did chemo. I am almost finished the Cytoxin Taxotere routine--4 rounds. For me that combo has not been too hard. I also had a double mastectomy amd when I finish the chemo I will be on a pill for 5 years but not the tamoxifin --can't remember the name right now!
I think if my onco score had been lower I would have chosen no chemo and that is what my onco was originally recommending. Good luck with your decision and recovery.

low oncotype score
Janet,

Our stories are very similar. I found your post when I did a google search for "I have a low oncotype score" and I have since registered on this site - I think it will be very helpful. I hope you are doing well after your diagnosis and I'm curious what you ultimately decided to do.

I was diagnosed in November 2010. Long story (not very) short: I was 41 years old, with two young children (now 12 and 10). Calcifications were found on my annual mammogram. Due to a lousy, extensive and rather depressing family history, a biopsy was performed and I was diagnosed with DCIS. I had a lumpectomy but it wasn't "just" DCIS - there was an invasive (1 cm) tumor found, along with two more smaller (just a mm or so) invasive tumors, and more DCIS. Second lumpectomy = no clean margins, again! Thus mastectomy & reconstruction (tissue expander) surgery followed in Jan. 2011, with final reconstruction in April 2011. I had clean lymph nodes, but there were "isolated tumor cell deposits" on two nodes. Apparently this does not mean I was lymph node positive - it still classifies as stage 1, grade 2, lymph node negative, ER/PR+ cancer. I got clean margins (via mastectomy).

After multiple surgeries, I decided to meet with a geneticist and tested BRCA2+. This was especially difficult because my mother, who has battled breast cancer twice and is now stage 4, had tested negative 6 years ago - but that was before the more sophisticated "BART" genetic testing was being utilized. Turns out, not surprisingly, after being re-tested, she has the same mutation. She took hormones for 20+ years, did not have the benefit of the full-range genetic testing, thus did not have a double mastectomy, and had a second occurrence of breast cancer 3 years ago in the other breast which has now spread. She also did NOT have the oncotype DX test, despite having ER+, stage 1, lymph node negative cancer. (I believe the oncotype DX test may only be in use for premenopausal women, but I'm not sure.)

I was not tested for BRCA genetic mutations initially because it was assumed that since my mother tested negative, I was negative too (there is no history of breast/ovarian cancer on my father's side). However, my surgeon recommended that after my treatment I follow up with a geneticist, just to be sure. I'm very glad I did. Since I tested positive, 4 other relatives have tested positive for the same BRCA2 mutation. I hope my diagnosis will spare them from my experience.

After testing BRCA2+, I had more surgery - this time a prophylactic mastectomy (on the other "good" breast) and a full hysterectomy. Since I am now considered post-menopausal, I now take Arimidex instead of Tamoxifen. I hope to God it works!

My oncotype DX score was 13. After consulting with two oncologists, both of them did NOT recommend chemotherapy and I decided not to do it, as my likelihood of recurrence (with hormone therapy) is estimated to be about 8% over 10 years and chemo would not add a significant benefit. Now that my mother's cancer has come back, I am searching the internet hoping to find other breast cancer survivors who also had low oncotype scores, to make me feel better!

Please let me know how you're doing.

Decisions decisions....
Hi ... I did the Oncotype DX because my MO wanted me to start chemo right away. She did the math (before the Oncotype test) and said my recurrence score was 36! She said chemo would cut that risk to 11%. I am/was squeamish about doing chemo so I opted for the Oncotype test. It came back with a low score so I went for the radiation. Everything I've read/learned is that chemo is not for those of us who are Stage I or II, ER+ PR+ and Her2 negative. In fact, it does nothing to help us. I don't know about the BRCA results. I didn't have that test run (at least not that I know of). My cancer was 2 parts invasive and 1 part non invasive. Stage II, no node involvement, 3.2 cm tumor.

Read about the chemo vs hormone therapy. Chemo can do more damage for people who really don't need it.

Good luck with your journey. Please be well informed before jumping into any treatment.

keep in touch

Mary

Kiantae said:

I chose not to have chemo but that was right for me.
My score was similar to yours. I was Stage 2 with spread to 2 lymph nodes. My oncologist said there are newer studies that indicate the oncotype results are the same with no lymph node involvement as it is with 1-3 lymph nodes affected. I was undecided as well. My oncologist recommened I not have chemo but only after he consulted some experts at UCLA and had them review my case. My surgeon recommended I have chemo. He had heard of the Oncotype test but was not up to date on current studies. He did mention there is a tumor board at the hospital that will sometime review cases with a panel of doctors and give a recommendation. He agreed to take my case to the board and present it since I was unsure of what to do. Lucky for me there was a Cancer expert from California at the hospital providing training to the members of the tumor board and others. They used my case during the class and the expert agreed with the 'No chemo' recommendation. I felt that I did everything I could to research options and then made my decision. I did have radiation as an added measure and am on Femara. I would recommend you do as much research as you can that will make you feel comfortable with your decision whichever way you decide. Good luck in your journey. It is not an easy decision.

I get my oncotype results on the 20th
I haven't read all the comments here yet, but I will! I was diagnosed on December 28th and had a lumpectomy/sentinel node biopsy on February 1st. I was told by my surgeon I would only need radiation and tomoxifen. Met my oncologist finally on March 1st. He wanted to start Chemo, and I totally freaked. I wasn't planning on that being it was stage 1 grade 1. I thought I would be starting radiation and then hormone therapy. So we sent off for the oncotype tests and I am still waiting to hear my results. I should find out on the 20th. I will choose not to have Chemo if I come back low risk. I am not sure what I will do if he is pushing it. I don't have alot of support in place, so I feel very fortunate to have found this site.

Similar situation...

We have similar situations, but it has been 2 years since you posted your topic. What did you finally do?

I was diagnosed with invasive ductal carcinoma in February 2013, had a single mastectomy on March 11, and am waiting for my Oncotype test results. They will be in on April 10th. Cancer was Stage 2B, Grade 3, +ER, +PR, -HER2. My oncologist immediately recommended Chemo and hormone therapy. I am against both. When I asked her what the statistics/percentages of it recurring with chemo or without chemo, she didn't have any answers. She reluctantly offered the Oncotype DX test and made sure I understood it was NOT Standard procedure AND said her recommendations would not change when the test results came back. I was relieved there is a test and immediately agreed to have it done. I am looking into alternative cancer treatment centers and have found one that I believe I will be going to get a second opinion. Oasis of Hope in CA. I am not convinced that aggressive chemo and hormone therapy is the best option for me or most women with breast cancer. I'm extremely impressed with the treatments that are offered at Oasis of Hope...low-dose chemo using insulin potentiated therapy along with high-dose IV Vitamin C, etc. They also treat the whole person and are a Christian-based clinic. They teach you how to eat to prevent recurrence. Too many women just fall in line with the traditional treament plans and don't realize there are other options out there.

Hi Janet T

Its Very nice to meet you! 

I had a very similar dx in 2004.  I must say it is sooooo good to talk to people who know what your are going through!

At the end of the day, you have to get quiet.  Your answer is inside of you.  Not in the Dr, the Pink Sisters, or even your family.  Inside of you!  Follow after PEACE.  Decide, may I say with the Lord and NEVER look back.  What happens tomorrow is for tomorrow.  Today has enough trouble of its own. 

WHAT MAKES SENSE TO YOU?  THAT'S the right decision!

(((HUGS))) to you!