oncotype dx score

farmerjo · February 2015

I would be interested in knowing more about this genetic test.

Was it offered to you? What was your score? Did they give you a recurrence percentage based on your score?

Based on your score, what decision did you make regarding treatment?

Thanks everyone!

hummingbirdlover · February 2015

Hello. My MO ordered the oncotype test for me after one of my tumors was upgraded from grade 1 to grade 3 following surgery. My score came back 17, which put me in the low risk category so chemo was not recommended as part of my treatment plan. I am taking tamoxifen now since I was ER/PR positive.

kselke · February 2015

My oncotype test was low, but I chose to do chemo. My lymph node came back positive.

Annie88 · February 2015

Hello! I had the oncotype test with the results coming back a 5. My MO suggested RT followed by 5 years of Tamoxifen. She didn't feel chemo would bring any great benefit, as I had no lymph node involvement,however she did think there may beSE. This week I am finishing my 28th RT and begin Tamoxifen.

ml143333 · February 2015

I came back at 23. Although still in the intermediate range, chemo was recommended as it would reduce my chances of recurrence by another 5%. I had no nodal involvement and will start tamoxifen after chemo is done.

Meow13 · February 2015

Mine was 34 I chose no chemo .

Anonymous · February 2015

Mine was 15 and my MO said tamoxifen would be my weapon of choice (my tumor was highly estrogen postive). Chemo would do more harm than good in my case, and I embraced that! Only 1 more year left of Tamoxifen and I am DONE!!

Annie88 · February 2015

Susansgarden- How has your experience w/ Tamoxifen been? I am finishing up my radiation therapy this week and then I start Tamoxifen. My BC was highly estrogen positive too. I have had endometriosis and wonder if there will be any issues w/ that. Congrats on being near the end of your treatment!

fralaliso · February 2015

My Oncotype was 16 and the recommendation was no chemo. My tumor was highly ER positive as well, so Tamoxifen is the recommended therapy. I just filled my prescription over the weekend and will start tomorrow. Fingers crossed for minimal side effects.

Congrats SusansGarden on being near the end of your Tamoxifen treatment!

Dancermom1999 · February 2015

Hi Annie 88...I was given Tamoxifen after my bmx in January 2014. I had an internal ultrasound at the beginning and everything was normal. While side effects are supposedly rare, in 9 months I developed a thickness of my uterine lining of 1 cm, pre cancerous hyperplasia of the uterus, a 1 cm fibroid tumor and a 2cm left ovarian cyst. I elected to have a complete hysterectomy and am now on an AI. This is not meant to scare you but to just make you aware that if you have had uterine issues you will want to be monitored to make sure you do not have any uterine changes. This was all caused by our "friend" estrogen.

shelleym1 · February 2015

My oncotype was a 15. My oncologist recommended no chemo as the side effects would out weigh the 1-2% benefit. This score gives me a 10% chance of recurrence over 10 years with hormone suppression therapy. I had no nodal involvement.

mjjones453 · February 2015

I had an Oncotype 8, I had all sorts of issues while on Tamoxifen. Recently I had a Bilateral Salpingo Oopherectomy because of strange cysts ton my Ovaries that were changing and becoming enlarged. I feel so much better having had them removed. Physically and mentally! I did have thickening of the Uterus, but they were not concerned at this point as a biopsy came back negative. I am at my five year anniversary, but have not seen my oncologist since having my yearly mammogram. I am wondering if I will be able to lose weight, the hair will stop falling out, and if my nails will be less brittle. As well as aches and pains. I do not have any regrets staying on tamoxifen for the duration of five years, but I am looking forward to being on less medicine.

Anonymous · February 2015

Most of you that posted here are node neg. I had oncotype score of 11 prior to surgery, but after double mast, had 4 pos nodes so chemo was definitely in the future. Interestingly my tumor had all gades from 1-3 and I just learned recently that is not that uncommon.

Anonymous · February 2015

Annie88, Tamoxifen hasn't really caused any noticeable/unbearable side effects. Sometimes it's hard to know what is normal aging...I've always struggled keeping weight down. I procrastinated refilling my prescription for over 2 weeks and so was off it and didn't really notice a difference, but I suppose it could take awhile to get out of my system.

I was monitored every 6 months with a transvaginal ultrasound and they did eventually find a suspicious looking ovary 2 years in and wanted to remove it. After much thought and debate, I decided to have a full hysterectomy (robotic). The surgery was easy for me and I was back running at the 6 week mark. The ovary (and everything else) ended up being completely fine. But it was nerve wracking waiting and wondering so I have no regrets. Plus I suppose getting rid of the ovaries would be of benefit to me since I was so highly estrogen positive.

I elected to stay on tamoxifen after the hysterectomy and not move to the AI's. I had a baseline bone scan done before I started Tamoxifen and I had some osteopenia in my hip bones. Staying on tamoxifen when you are POST menopausal actually helps build bone (does the opposite when you are premenopausal) So MO said he was okay with me staying with Tamoxifen since I seem to be doing okay and am almost done. Switching to an AI didn't give me that much more benefit (in my opinion) and I didn't want to risk the bone loss because it can be a lot worse with them. I'm curious to see what my next bone scan says, which I think will be in December (if I can afford the deductible!)

gentianviolet · February 2015

My oncotype number was an 11. My onc put me on Arimidex after rads and within 6 months I had hip/knee pain that kept me awake at night, as well as tendonitis in my right ankle. I was then put on Tamoxifen and although these issues did calm down I continued to have issues with hips, knees, and my ankle. Time went by and eventually at 4.5 years of taking tamoxifen, I quit. By this time the pain was so bad that I had been limping for well over a year. I am only adding this because my MO and my RO both told me it was my age and not the medication. But to my surprise within 3 to 4 months every pain that I had resolved. Not that I don't have a bit of arthritis in my hip but it is a totally different pain than when taking tamoxifen. The arthritis is more stiffness when I get up rather than pain that made me limp. So for you women that have doctors tell you that it is not the meds causing the pain, just know that, in my case, it was.........and it may well be for you too. Sending good thoughts to all that are on this journey that no one wants to sign up for.

Anonymous · February 2015

Interesting gentianviolet! I really hate this "magic 5 year" rule. There is no way one can tell whether we as individuals will be just fine taking it for 2 or 5 years...or never at all. Damn crap shoot.

tgtg · February 2015

My oncotype # was 12 (recurrence predictions: 8% with tamoxifen, 15% without it) and I declined all hormonal intervention entirely, since the disadvantages far outweigh the advantages in my mind. I won't be intimidated into taking any medication that causes ailments far worse than my excised tumor--especially ones that are undetectable until it's too late, like stroke, fatal blood clots, and a host of others. Of course, bc is bad, but those other things are far worse, and I won't let an MO use fear to pressure me into taking something that can kill me long before a second bc appearance can. The research shows that the deaths of people who die of treatment-induced ailments are not classified as the result of bc, by the way, but as the result of cardiac issues or dvt or whatever; this statistical sleight-of-hand makes the hormonal treatments look far more successful than they are. But that's me, and my personal opinion based on research. And I am happy to exercise, keep my BMI and weight normal, get enough vitamin D, and generally live prudently (except for an occasional glass of wine or two).

farmerjo · February 2015

Tgtg...wow, what an excellent post. I whole-heartedly agree with you, given your age.

I had a friend with BC that passed two years ago. She was 52, dx'd at 50. She died from an embolic (clot) stroke. Stroke was her cause of death. It's rare but does happen.

Annie88 · February 2015

Hello! Dancer mom 19 and Susansgarden-thank you for sharing your experiences on Tamoxifen. Did you OB/Gyn suggest you have more frequent exams? It feels like we already live at the Drs, so what would it hurt to add one more

Dancermom1999 · February 2015

My OB/GYN really felt I should have the hysterectomy. Once I had this done I only need to go back every year. I was only on Tamoxifen for 9 months before all the issues started.

Anonymous · February 2015

Annie88, my MO requested the every 6 month transvag ultrasounds. Because of the tamoxifen and also because , although I wasn't BRCA2 positive, I did have a mutation on that gene of "unknown signifigance" so he wanted the extra monitoring.

Annie88 · February 2015

I finished my RT today! It was bittersweet- I hugged and kissed them goodbye! They were all so very nice! I picked up the Tamoxifen RX today's- here I go!

SusansGarden- I see my local MO in 2 weeks. Initially, I was treated by a family friend MO in Houston and had my surgery w/ a BS that she recommended up there. This is my 2nd appt w/ this MO, so he may give me feedback on what I do next

DJCRI · February 2015

Hi, I am new to the discussion board. All of your posts have been very informative. Still deciding how to move forward. My oncotype score came back at 15 and my MO feels strongly that chemo will not be very helpful -- small, 2% benefit. I really don't want to have chemo unless it is going to make enough of a difference for me. So that is what I have to decide right now - chemo or now chemo. With or without the chemo, my treatment would be radiation and endocrine therapy. I decided to get another opinion to validate my MO's recommendation. In posts, I haven't seen ER+ PR+ HER2- with lymph node positive (mine is a 6 mm metastatic deposit and lymphascular invasion is absent). It's the lymph node involvement that makes me a little uneasy. Any thoughts/suggestions about what to ask at second opinion appointment?

farmerjo · February 2015

Djcri...I have read that oncotype under 18 doesn't warrant chemo but I do agree about getting that second opinion. You're entitled to that and it's reassuring.

Go to your profile and fill in your stats so we can see them when you post.

Welcome...this forum will be your new best friend!

DJCRI · February 2015

Thank you jilly 59 for the info and feedback. Didn't realize my setting were set to private.

.

Grace3Boys · February 2015

Djcri - My Oncotype scores were 23 & 26 on two small (7&8mm) tumors. I had a 1.5mm micromet in the sentinel node. My docs had me do the test, hoping for a low score to get me out of chemo. They were recommending chemo if I had a intermediate or high score (Over 17). But I also have a favorable subtype.

I think it's good to get another opinion.

Good luck!

duckyb1 · February 2015

Hi ladies ....new to this thread, but found it and hadsomething with information I have been seeking......I had an oncotype score of 8.lumpectomy......1.2cm tumor.....good margins......and no node involvement........38 radiation treatments, and 3 1/2 years on Femara.......

Trigger fingers, hip pain, back pain, hair thinning, dizziness, off balance, and finally foot neuropathy......had enough, and finally went off........instant relief within 2 days of stopping.......I asked my MO....could that be possible......she said yes it could..........I have been off for 2 months, but was willing to give Arimidex a shot........still have not started.....the bottle of 30 is still full in the drawer.......my MO suggested Faslodex, but I read the SEs' of that, and refused to take it..........

No one wants mets, but after 3/12 years I have decided that quality of life is much better then quantity.....I will be 80 in April.......so how much time do I have left anyway.........

So glad I found this thread.......I really have to decide what to do......thought I might try the Arimidex, and if I get the symptoms again, will just give it up for good and take my chances...........will keep you posted...........hugs, and I will be back.........

aussieched · February 2015

Hi Ladies, I note a number of ladies above have quoted "that their ER and PR levels were high so hormonal treatment was considered to be very beneficial".

What is considered as high percentage for ER and PR levels? Mine were 80% for both.

We didn't have the Oncotype test available in Australia when I was diagnosed,so I have no guidance regarding risk of recurrence. I was told to have my ovaries out and go on Femara, and that chemo would probably not be helpful due to the side affects it can cause.

I have been on Femara for just over 7 years now and I have to decide to either stay on it and have treatment for bone thinning, or go onto tamoxifen as recommended by one of my doctors.

thanks Ched

farmerjo · February 2015

My PR was 90% PR 5%. My oncotype 19. Under 18 doesn't need chemo but he said because my ER is so high, hormonal therapy alone will work for me.

tgtg · March 2015

Hi, duckyb1--I was so glad to have found the "cancer math" tool (done by folks at Harvard and Mass. General Hosp., not by drug companies as Adjuvant Online is). I was 71 at diagnosis two+ years ago (will turn 74 in April) and found it very helpful in deciding about hormonal therapy for a cleanly excised grade1/stage1 tumor with no nodal involvement. From it I learned that if I don't use either an AI or tamoxifen I would cut a mere 3 months off my projected 88 years of living. Not enough of a gain for me, no matter what the drug companies say in percentages! And using either of those drugs would be more likely to give me a fatal heart condition or clot long before 88, to say nothing of a broken hip or uterine cancer! No thanks!

If you want to plug in your stats and find out your predictions (use the algorithm three ways, with an AI, with tamox,and with no treatment), here's the link:

http://www.lifemath.net/cancer

At the general level, it offers you an idea of how long you are expected to live based on age and also on the pathological characteristics of your tumor. More specifically, if you click on the "therapy" button, it will predict the long-term effects of doing--and not doing--either type of hormonal therapy. And you can do this calculation 3 ways--taking an AI, taking tamox, and taking zip, nada, nothing!

oncotype dx score

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