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Oncotype score and feeling bad

kaynotrealname
kaynotrealname Member Posts: 346

My onctotype score came back yesterday and was a 23. I am pre-menopausal and under 50 with a grade 3 tumor so was feeling okay about it until I was reading and realized most people score less and don't need chemo. I will be having taxotere and cytoxan for four cycles three weeks apart. But even with chemo and hormone treatment my chances of recurrence is still 8%. Which seems high to me and I'm especially worried about hormone therapy. What if I can't handle it? It all just seems overwhelming. Pathology showed no node involvement, no LVI involvement and I have a positive ER/PR and HER2 negative so I know it's not as bad as I'm feeling right now. But it still feels bad. By the way how do you compare a quantitative single gene score to your immunohistology results? I had the same hormone results on my onctotype score but there score is different and I want to understand where I stand with their score.

Comments

  • sarahmaude
    sarahmaude Member Posts: 326

    kaynotrealname,

    I’ve done a lot of reading oncotype related journal articles, and I know how disappointing it is to find out “you” aren’t one of the seeming majority who get a pass on chemo with a low OncoType Dx score. I’m older than you and post menopausal, so if I’d had a 23, I could have skipped chemo. Instead, I had a 49. (yikes!). I knew that the type of analysis that Exact Sciences performs can show different levels, and that for a few, they even end up totally different from their original pathology. In my case, none of the facts in my IHC were much different from my OncoType results. I was still strongly ER+ and still PR and HER2- , but I don’t think the % were exactly the same.

    One thing that I remember reading recently is that each analysis is on a slightly different portion of the tumor, and tumors aren’t necessarily homogeneous throughout.

    I just finished my four rounds of TC a few weeks ago. I didn’t like it. Wouldn’t do it for fun, but having the confidence that there was science that clearly stated the risks of chemo were overcome by the survival benefit I’d gain was convincing to me. Some things I didn’t know about TC treatment in 2022 that were true for me were

    1. Nausea and vomiting are uncommon due to premeds most of us get. I never had either.
    2. I could keep most of my hair. I used Penguin cold caps, and even though my hair is thin, I really need no head covering unless I’d be in the sun, when I should have had a hat anyway.
    3. I was able to keep working through most of my treatment time. I took every chemo day off, and 3 of the four “day after” days, but I was able to keep up with my desk job with only minor absences.
    4. I didn’t need a port. I was successful in using my veins.

    My worst side effects were taste changes and my tongue felt like it had been pizza burned; constipation (Miralax was the best help for that), and fatigue on the 2-4 cycles.

    I also know that there is a clinical satisfaction team at Exact Sciences. On their website is a phone number, and I know you can ask for them to explain some of the variations. You can leave a message and one of the team will return your call.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Thank you for that. It seems like I always have trouble the day after I get new results. I think it's just the processing I do, thinking of the worst case scenarios. And the dread of what is to come. Not so much the chemo. That's short lived. But the hormone therapy and how I'll do on that for the next 10 years and then of course the question of will it work....anyway I wish you the best of luck and I'm sure you're glad chemo at least is in your rear view mirror. I'll be glad of that, too. Plan on using digicap myself. One thing I was excited to hear is that cold capping tends to work well with this combo of chemo. It'll help my kids if I didn't look that sick.

  • pebblesv
    pebblesv Member Posts: 486

    Hi katnorealname -

    I just wanted to chime in and provide some input that I hope will help you feel better. I am also under 50 and pre-menopausal with an Oncotype score very similar to yours at 21. In my case the risk of recurrence was the same with hormone therapy or chemo so I did not need chemo. I am on the hormone therapy tamoxifen and it’s been very tolerable. I never experienced the joint pain that most women complain about on tamoxifen, nor any other major SEs. I swim regularly so maybe that helps. My oncologist also thinks I’m faring better on SEs because I’m premenopausal. I do feel I have weight gain related to tamoxifen but if I feel fine otherwise than I guess it’s tolerable. I really feel pretty normal otherwise and for better or worse, I’m still very regular on that “time of month” so the hormone therapy is not pushing me into menopause. Which since I’m under 50 I’m actually happy about.

    On the 8% risk of recurrence look at it this way - you have a 92% chance of remaining cancer free after all the treatment! That’s a very high percentage of being just fine!

    It’s been almost 4 years since my initial diagnosis and yesterday I received the best news which is a free and clear mammogram! Meaning I am currently NED (No Evidence of Disease). And frankly feeling pretty normal overall even as I continue on the hormone therapy.

    It looks like sarahmaude provided some great advice on how to get through chemo with minimal SEs. I’ve heard of the penguin caps being very effective at keeping your hair too. Best of luck on your path forward! You WILL get through this and 92% chance of no recurrence is very good

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Thank you so much for your encouragement and congratulations on your clear mammogram! That is the best news possible and now you've been free and clear four years. Also nice to hear you don't feel any different on tamoxifen. Since I'm probably pretty close to menopause myself they've decide to put me on an AI with ovarian suppression. I am on an anti-depressant so we won't have to worry about drug interference with an AI. Scared though cause I know it has more side effects than tamoxifen but then at the same time I knew I wasn't going to be eligible for HRT even if I hadn't gotten breast cancer (we have a history of ovarian cancer in our family). So I'd have to deal with these types of side effects no matter what sooner than later so I might as well get on with it. Bring on the dreaded menopause! Luckily I'm close to 50 and have had plenty of estrogen in my life. Hopefully that will help keep the health issues under control that can result from no or very little estrogen for the rest of my hopefully long life. So I'm trying to have a good attitude and hope for the best. I am feeling a little better today and just deciding to get on with it since there's nothing else to be done. By early October I can be done with it and can enjoy healing as I prepare for the holidays. And then early next year reconstruction. One thing in all this I've enjoyed though is getting rid of triple D breasts. I am short and tiny and now look ten year youngers since I'm nearly flat (they left some skin for my reconstruction so I've actually got wilted, deflated A cups). I really love the look and I'm glad I know that so that when I go to reconstruction I can just ask for a little more of an aesthetically pleasing breast. But not too much of a bigger cup size. I would never have had the chance to experience that if it wasn't for stupid cancer. I just wouldn't have thought I'd like being almost flat. Go figure. I call it my cherry on my crap sunday (only I use the profanity version ;).

  • sarahmaude
    sarahmaude Member Posts: 326

    I can say that I was started on Arimidex pre surgery, long story, but I also had very manageable side effects. No joint pain. One hot flash daily, at bedtime; not sweaty or miserable, just noticeable. I take Pristiq which is similar to Effexor, and I think it mitigates hot flashes well. I think it is also helpful in keeping my brain from overthinking and worrying more than is needed.

    I’ve been off Arimidex since starting chemo, but am not worrying about taking it again in a few weeks. In fact. I’m glad to know there is a one pill solution that has such proven results for women with HR+ BC. I think that more needs to be done for women who have intolerable side effects, and I'm grateful I don’t seem to be one who has them.

    My Arimidex pill is so tiny. It’s hard to believe how mighty it is.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Thank you for that. I'm trying to remember that when people post here or in other places it's usually because of an issue. But these issues, although they seem to be the majority on these types of sites, are not the majority in the outside world. Not that they don't matter and not that something needs to be done for those with horrible side effects. Just that most people don't get them and because of that they aren't on-line writing about it. But it is hard to remember that. I don't know yet a ton of people with breast cancer since I'm only in my late 40's and though not considered a young patient, I am younger than the typical one. So I count on these sites a lot to get an idea on how to cope. So I'm so grateful to hear from people who have quite manageable side effects or no side effects at all. And I wish you a continued and speedy complete recovery.

  • pebblesv
    pebblesv Member Posts: 486

    kaynotrealme - I'm glad you are looking at the silver linings and you're right, the holidays can be a healing time and something to look forward to. And the good thing about menopause is you won't have to experience major cramps like I do every month (day one is always a pain for me, literally) so there's a silver lining too. Wishing you a smooth and continually healing journey going forward!