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Does your Oncotype score play games with your head?

Hi all. I'm not sure if this is the right forum for my question.

My Oncotype score was a 7. I've noticed that knowing that I'm "low risk" for recurrence is affecting my attitude toward my treatment. I feel less committed to my medications, less worried about drinking too much or not eating enough vegetables. I have thoughts that the side effects aren't worth it because my tumors are "unlikely" to come back as metastatic disease. I'm "low risk", so I'll probably be ok no matter what I do....At least, that's the potentially deadly train of thought I have. I read somewhere that having a low Oncotype score correlated to women giving up on their medications.

Does anyone else notice themselves having thoughts like this? I'm wondering how having a medium or high Oncotype score affected your attitude toward medications, lifestyle factors, and anything else?

Comments

  • alicebastable
    alicebastable Member Posts: 1,934

    It probably will take up less head space as time goes on. I'm 2+ years out, and my score of 17 (quite a bit higher than yours) never affected the way I do anything.

  • summerangel
    summerangel Member Posts: 182

    Of course it makes a difference. When I was experiencing terrible side effects from Tamoxifen and decided to quit, my oncologist gave his blessing because my tumors had favorable characteristics and my Oncotype was low. Statistically I am unlikely to get a recurrence, so I'm not worried. If I had a high Oncotype score I definitely would have either tried to struggle through with Tamoxifen or pursued other ways of reducing my risk of recurrence. I don't think I'm taunting fate or anything like that, my thoughts and behaviors are perfectly logical.

  • beach2beach
    beach2beach Member Posts: 245

    My score was a 9. I flop back and forth with it.

  • wallycat
    wallycat Member Posts: 1,237

    My oncotype was too high for comfort; the shock was palpable after getting my path. and "official dx." It took a year for me to walk off the proverbial ledge.

    I'm a science gal, to a point. I wanted to do what science indicates offers better outcomes but I did weigh it with quality of life. I didn't consider 10 years (wasn't offered at the time of my dx) of antihormonals. I exercise, but not fanatically. I drink wine with dinner and occasionally have a port or a celebratory single-malt (yeah!! election). I try to meditate, look at the bigger picture and try to be more forgiving to myself.

    My mantra (at least in my head) is that I did everything right and got it. There's no guarantee doing everything wrong (or right) will keep it at bay.

    I just read several posts here about 20-26 year gals coming back with a recurrence. Cancer is a crap-shoot. Follow the science and allow for quality of life.

  • UpstateNYer
    UpstateNYer Member Posts: 331

    Hi orangeflower,

    My onco was high "48". Came as a total shock to surgeon and oncologist as I was very estrogen positive. Also, had unclear margins 2 times, so needed 3 surgeries total. Chemo was very hard on me, but got through the 4 rounds. Radiation went well for me. I have been taking Arimidex since Sept. 2019 and have done well on it. I still get anxious when I start to think about recurrence, but try to lead a healthy lifestyle by eating right and exercising daily. There have been women who have had recurrences with a low onco scores, so cancer can be a tricky b...h. If I were you, I would do what your MO advises. I know that many women have a hard time taking AI's, but fortunately there are several to choose from if the one you are taking is not tolerated well. Best of luck to you.

  • voraciousreader
    voraciousreader Member Posts: 3,696

    i worried. But it never affected my life. Just did my treatment and moved on with my life. I had had two occasions that required emergency life threatening surgeries, so when I got breast cancer and was told I should do well and be ok, I just said...ok and that was that. Would I have liked to have a lower Oncotype DX score? Of course I would. But...I also would have liked to be able to wear high heeled shoes and not walk like a duck in them. Some things are just not meant to be. With that said, in 2018 I had another cancer scare. Turned out to be a benign tumor. A myxoma. Had to have a pretty big surgery to cut it out of my upper leg. A few months later, I had a hip replacement in my opposite leg. I now have matching scars and look “even.”


    my point? You can worry as much or as little as you want to. My advise? Make peace with whatever treatment decision you make, based on the best available info at the time, and don’t let time stand still. Live life. There are many curve balls out there ahead that will still head your way. Duck and then come out swinging. The way to hit a home run is by being in the game...not of baseball...but of life!

    Good luck


  • molliefish
    molliefish Member Posts: 650

    I didn't worry and I did what I had to do. I live in a world where isee the end of life every day in a variety of sudden or not so sudden ways. I know that we never get out alive some of us are luckier than others. My grandmother celebrated 100 this summer. Will i get there. Who knows. I'll give it a shot though. I am finishing my 5th year of tam in November. When I see my MO for the last time on the 26th will be the last day I take the jagged little pill. After that what will be will be. I have bald spots, dry eyes, parched skin, no eyebrows and haven't had a period in years. I also have two amazing kids, a pain in the ass husband who works from home for COVID, 2 dogs, one who is a total moron, and a Job that I hate to love. This is life. Tam is a small part of it. Bonne chances a toi

  • flashlight
    flashlight Member Posts: 311

    molliefish, Great post!!! Best wishes on your 5-years of Tamoxifen!!

  • ctmbsikia
    ctmbsikia Member Posts: 752

    I am not a numbers person. At first I thought the treatment recommended was overdoing it but the more I understood I thought different. It's not like I suddenly gained more knowledge than my team. Dodged chemo with a score of 17. When I plug my stats into one of these sites, the added benefit of taking an AI doesn't seem like a high percentage, but the way Beesie explains it, it really is worth it.

    I have SEs but not horrible. Moving for me is key. They worry gets less with time. You are just starting out. I don't like the size my tumor was, and that I have LCIS on the other side. Some worry of developing another primary. I hope doing what I'm told can avoid that. Next year need some sort of med for my bones but I am confident that will work out with whatever else gets prescribed and hopefully approved.

    Best wishes to you, I hope it just becomes 2nd nature to you and everyday is a good day!

  • arabiansrock
    arabiansrock Member Posts: 40

    My oncotype is 11. Recurrance change with AI 3%. Without AI 6%. Neither is terribly high. If qol suffers, this will def weigh in on my decision on whether or not to continue or try a different drug. If I am one of the lucky ones to tolerate with no problems, then I will just take for 5 years and be done.

  • Colliesalways
    Colliesalways Member Posts: 6

    My oncotype is 10. I feel it not only maybe messed with my head a bit but maybe with some of my medical team as well. I'm a bit tired of being told how "lucky" I am and my first RO even used the C word, CURE you of this he said! My mouth fell open, we don't have a CURE for breast cancer! We can hope to be NED but technically cured? And cancer is cancer so no, I do not feel lucky because any one of us can pop a recurrence and/or mets at any time. It's the reality we live with. Lucky? Yeah, sure, whatever. But yes, initially I did find myself thinking the same as you Orangeflower against my own better judgement lol! It's been a weird ride! I think maybe it takes a while to wrap your head around all this and find a good middle road of knowing and understanding your situation but also trying not to go the other way and spend your days looking over your shoulder and worrying about a recurrence. I did radiation and am now on Tamoxifen for 5 months with no side effects except some weight gain. I already needed to loose weight so that is very depressing for me and I worry about the effects.

  • leesad
    leesad Member Posts: 100

    My Oncotype score was a 3. My thoughts on it are many. By the time I got that bit of information, I had received so many bad surprises from my team that I think when my oncologist called me with the 3, he and my breast surgeon were like finally we can tell her something that might be promising. I was told I had a teeny tiny tumor (6 mm) based on ultra sound, biopsy, MRI, etc...my breast surgeon even before surgery said 'great pick up by my radiologist' as it's so small it would've been easy to miss 🙄. Well this teeny tiny tumor was actually 3 cm's after mastectomy. Then during surgery they found one of four sentinel nodes showed micromets. Final pathology showed it was actually 2 of the 4 had micromets. I asked about ALND and MO and surgeon said not really needed with micromets and chances slim to none they'd find further involvement. Well after the teeny tiny tumor wasn't so teeny tiny I didn't trust anyone anymore and knew I couldn't not know. I pushed to go back in and breast surgeon was fine with it. My oncologist didn't agree but not his decision. Well when my oncologist and breast surgeon called me within five mins of each other telling me that 2 of 14 more nodes taken were and I quote 'full of cancer' I had about had it with any results. I was destined for chemo regardless of what my Oncotype was. I was set up for chemo and got port implanted and then my oncologist called and said my Oncotype was a 3 (lowest he's ever had in a patient). I guess I didn't know how to react as my cancer was definitely on the move. The low score changed my chemo regime from AC-T to TC. I still ended up with radiation also as there were 4 involved nodes. I actually couldn't wait to start the AI's as I knew based on the score that that's what my cancer would respond to best. I don't fall back on the 3 but I'm a different circumstance I guess. Every choice I had to make, I took the aggressive route and glad I made the decisions I did. If I didn't have the ALND, I would not have had chemo or radiation as the very low 3 and BMX wouldn't have called for it. I would've been sent on my way with AI's and the positive nodes still there. I'm glad I got the oncotype results after I had the ALND because if I would've gotten the results beforehand,I might've been swayed to not check further nodes. Everything happens for a reason and I do not regret any decisions I made and everything had to line up exactly as it did for me to get all the complete information about my diagnosis. I don't like the side effects from the AI's but I don't feel like I have a choice not to take them and I'll take them as long as I can. Everyone's decisions are so personal and it's not one size fits all.

  • oldladyblue
    oldladyblue Member Posts: 302

    My oncotype score drove me crazy as the score was 28 and the doctors kept saying "high risk". Pre-surgery sizing was correct, small tumor, I decided on TC chemo, rather than AC and am happy with my decisions.

  • hopeful2012
    hopeful2012 Member Posts: 2

    Yes, my oncotype score does mess with my mind. My score was 32. I try my best to try and not let it overtake my thoughts.