Long term "high oncotype test" survivors
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Did you have chemo, radiation and tamoxifen. My score is 34 and I was just diagnoised on 9/11/12.
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Very grateful to IOUgirl for starting this post and continuing to contribute to it. Based on the results of the Oncotype DX test I have opted to have chemo, which I'm due to start tomorrow. If this doesn't propel me into the menopause (I was 39 when diagnosed and had surgery on my 40th birthday) I will request either an oopherectomy or Zoladex. I would prefer an ooopherectomy though to avoid the possible side effects of Zoladex which I believe is arthritis. Hang in there ladies.
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I had adriamycin/cytoxan 4 times (dose dense - meaning every 2 weeks instead of the conventional 3 weeks) and then I had taxatere 4 times dose dense. Then radiation and since I wasn't menopausal I had Tamoxifen for 5 years. The dose dense method knocked me on my rear. By the time I was finished with chemo, it took at least a month to begin to feel like I had any energy at all. The doctor warned me of this before hand but told me that the studies she had been looking at showed a significantly better success rate against the cancer doing the dose dense method because essentially the chemo is hitting at the cancer cells more relentlessly. I had a choice which method to use but I went with her advice and did dose dense. Incidentally, my dear sweet mother-in-law was going through breast cancer at the exact same time and she choice the every 3 week method and she is doing great also. Another consequentially important benefit of the dose dense method is that I went through the chemotherapy process faster. In the beginning I worried SO MUCH about that one little detail of my breast cancer....the Onco score of 52. It is such a waste of time. It is what it is and lets just be glad we absolutely know we are one of those that need chemotherapy. I am feeling great and doing great, as is my mother-in-law. I have met ladies that were on the fence about chemo because they were in the mid-range of the onco test score. I truly do not know what I would choose in their situation but I hope all of us on this thread have great success fighting this awful disease.
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Like you IOUGirl - I had DD AC/T and DD Taxol. My MO wanted to throw the kitchen sink at my Stage 1 high oncotype BC. (I had an additional 6 weeks of Carboplatin, as brca cancers, specifically, respond to platins.) I finished August 1...by January 15, I totally got my mojo back, but with some residual and annoying neuropathy in my feet (taxol related).
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Like IOUGirl and Kam170, I too had dd AC (4 rounds) and dd Taxol (6 rounds). I'm actually part of a clinical trial on the efficacy of dd Taxol (there's a convenience factor in not having to go for chemo every week for 12 weeks, but rather every other week for 12 weeks). DD put me on my butt, too - and I really struggled with SEs - but wanted to throw everything at this with a score of 42.
It is what is is. It'll come back...or it won't. Only time will tell.
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Hey Nancy - I haven't seen you around. I remember reading something on your blog about struggles with Tamoxifen. Do you continue taking it??
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Kam - I started Tami the week after chemo ended, and stopped three months later because the SEs were so bad. Took a one-month holiday, then started Aromasin - THAT only lasted about 6 weeks before it was in the trash can. Took another holiday, now back on Tami - and doing relatively well, I must say. My MO thinks the original SEs might have been related to chemo and not Tami; all I know is that the pain is greatly diminished, and my butt has gained about 25 pounds. I hope to stay on it as long as possible.
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So glad it worked for you the second time - as my gyn/onc says, it is more important than chemo! I'm on the generic Aromasin (exemestane) and continue to work through the SE's, the most notable, hand swelling when walking and stiff finger joints after not moving for awhile (like after sleeping).
Sorry about the 25 lbs. I seem to have the opposite thing going on (which is good), but have changed my diet and picked up on the exercise. My gf said she gained weight on Tami too and it stopped when she switched to Arimidex.
I just looked at your blog again and am so suprised you get tumor marker tests and bone scans. Is that related to your clinical trial? My MO doesn't do anything but general blood work on my quarterly visits. I worry about this light touch, given my brca status and prophy not guaranteeing against a second primary, let alone recurrence.
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If I remember correctly (and chemo just killed my memory cells!) my MO only did the tumor marker test and bone scan because I was having so much pain on the Tami. He just didn't seem to think it was the medication and did the tests "just to be sure." He doesn't put much stock in tumor marker tests - says they are simply unreliable. I doubt I'll get either again unless I have some sort of symptoms. It does seem kinda weird to me, too, that doctors don't do more testing. I know it won't prevent anything, but I'd really like to know early in the game, rather than later (or too late). I hope your MO picks up the pace a little. Will you have "big tests" at your 1-year appointment, by chance?
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Nancy - I think the message I get is "until I have symptoms." And my MO feels the same about tumor markers.
When I was originally dx'd, Stage 1, Grade 3, I was scheduled for a lumpectomy for 12/12. My brca results came in on 12/7 and that operation was cancelled. All of a sudden my BS was sending me for Pet/CT Scans (shoulders to knees) and then all of the ovarian ultrasounds. The latter I understood, given the risk of ovarian cancer, but I was never quite clear why brca positive, all other things being equal to pre 12/7 dx demanded a PET/CT Scan. I've never figured out the rhyme and reason of these things!
Another BCO member gets scans every year.
I think if I insisted, she would do something to ease my worries. Thus far, my insurance hasn't balked at anything ordered.
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My insurance has never balked at paying for any of my tests - except the BRCA test, which they refused to pay for. I have no idea if I have a mutated gene, which might have changed my treatment plan, too. My daughter's father's family is rife with BC, so I'm hoping she chooses (and her insurance pays for) the testing for her peace of mind.
I'll do any test I can get my hands on, as often as possible - I want to stay ahead of this beast as much as possible. Do you ever just wish there was a way to "know" instead of putting our faith in percentages and potentials?
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I asked my doctor what the difference was between taxol and taxatere because she chose to give me taxatere and she said that in general, taxatere has less sides effects than the taxol but they have the same active agent in them. I guess she gave me taxatere because when she gave me the AC chemo first, I had an allergic reaction to it that was pretty severe. I was coughing, sneezing, fevers, and felt like I had the flu (and that was just with the first dose). My heart felt funny too. So what does my doctor do? She says "Tough it out. You need this chemo and we are gonna give it to you until we feel that it is doing more detrimental harm than good. With that Onco score, you NEED chemo." Just about the time I was gonna say "no more", there was no more and I started the taxatere. Taxatere took all my finger nails and toe nails off but I didn't care, at least I felt better. Nails can always grow back. It was so funny when I finally was finished with my treatments. I took a good look in the mirror and wanted to scream. Instead I listened to my husband and he said "Hon, you look gorgeous. You have a great head for baldness". Years later the poor guy said "Man, that bald look was weird". We laugh now because it wasn't long before I had the cutest dark hair poking out of my scalp. My husband said with a wink and a nod "And all these years (32) I thought you were a blond....." I said "I am a blond. As soon as this hair gets a little longer, my hairdresser will show you how blond I really am". teehee
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Nancy - the "not knowing" is very difficult for me. I finally got into counseling and between that and just feeling more normal post chemo (I think just feeling horrible reminds you of the cancer), I don't get so anxious. Not to say I don't, in fact I know as I approach year 2-3, that anxiety might return in earnst. It's such a double edged sword - the passage of time. My counselor uses EMDR (bilateral brain stimulation) and it seems like an effective technique for my fears.
1OUGirl - thanks for explaining on the differences between taxol and taxatere. I was never given the choice. Ironically, I did a field inventory of Pacific Yew trees (the source of natural taxol) when the discovery was made of their medicinal properties (decades ago). Who knew it would later be both my friend and enemy! I do love my new hair. Never had the courage to stop dying it or cutting it short and I'm quite delighted at the outcome - everyone loves it, including me.
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Kam - I'm just coming up to my first year PFC in May, and both excited and nervous. I know the first couple of years are the most likely time for recurrence so every day that goes by without anything obvious helps me feel a little better. I think.
I'm weaning myself off my Effexor right now because I realized it totally flattened my affect and I just didn't care about anything. As scary as this all is - I really do want to feel *something*.I hadn't thought about EMDR - good idea! My DH is actually trained in EMDR. We've talked extensively about the resulting PTSD after cancer diagnosis/treatment and how difficult it is to get "past" it (can't really get "over" it) without some support. I tried my local support group but for a variety of reasons it wasn't a good fit for me. We just keep plugging along, don't we?
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Nancy - I believe EMDR has helped me a lot and I haven't even fully utilized it yet. I definitely use it to calm myself when anxiety gets the better of me. Most of the follow thru (instilling different thoughts and attachments - though this isn't an "official" term) has been done by my counselor. We had barely gotten into this when I got to a once a month schedule (for financial reasons). I want to do more.
I know I had to switch concentrating on the 2 out of 10 that had recurrence and start thinking about the 8 out of 10 that did not. Our dx are very similar, so I imagine so are our recurrence rates (with AI and chemo).
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Kam: You're right, our stats are similar; my recurrence rate with chemo and Tami are 18%. My MO confirms that my cancer is Luminal B subtype, so he seems to expect that I'll fall closer to that 18% than the 82% that do NOT have a recurrence. Isn't it strange how we can fixate on the (smaller) stat that's negative, rather than the (much larger!) stat that's positive?!
But I'm counting on both of us being long-term high-Oncotype score survivors!!
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Yes, my MO said I was luminal B too. PR is "positive" on oncotype, but just in and 1/2 the confidence interval was in the "doesn't count" category. My Ki67 was very high - 60%. Little confused about your statement: "so he seems to expect that I'll fall closer to that 18% than the 82% that do NOT have a recurrence." ????? Could be chemo too - lol.
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Hi all, I'm counting on all of us being long term high oncotype DX score survivors!
Haven't written much lately. Started FEC chemo on Friday and it's been pretty hideous so far. Can't shake the nausea but have managed to sleep pretty good despite taking steroids. Just laying low and waiting for the worst of it to pass. The cold cap has left me with a bad headache these past 4 days but I think I'll persevere with it. I wore most of my ski gear in the hospital so wasn't that cold but everything inside my head felt so weird when the blood started to flow again. Hoping SEs improve so I can get back to some sort of normal for at least a week or so between sessions.
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Sorry to be confusing. Because of being Luminal B my MO seems to think my chance of recurrence is really higher than 18%. But he can't know and won't know "until it happens" (thanks, Doc.) My pathology doesn't include my Ki67 - I wish it did. I feel like it's just another piece of my cancer puzzle.
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I didn't get my Ki67 score either although I understand it's calculated as part of the Oncotype DX test.
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Hi, My oncotype test score was 28 and i am suppose to start chemo on wednesday. I wish they had more statistics that they could show for the intermediate range.
I dread the thought of chemo, i had thought i would get by w/o it, but i guess if your stage 3 they reccomend it. I only have to do 4 rounds but still end up with all the side effects. Does anyone else think that chemo is a high price to pay on the "chance" that a cell got away. Ive been reading there are risks to chemo also.
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Because of being Luminal B my MO seems to think my chance of recurrence is really higher than 18%.
I guess I don't understand your MO's reasoning Nancy as the Oncotype stats take into account Luminal B, in the sense that Luminal B is ER+, PR- and high Ki67. Ki67 is one of the tests in the Oncotype score and is part of the Proliferation Factor. And ofcourse, ER and PR are part of the final score, also.
I am missing one important feature of Luminal B though - is it a behavior or a cell morphology? From my reading, it is determined to be "Luminal B" based on the factors I stated above, but can one be Luminal A and be ER+, PR- and a high Ki67? If it were more than the stats, i.e. a morphology that couldn't be determined in any other way but the stats, but without certainty, then maybe the Oncotype test doesn't already take it into consideration.
If there's any thing good to say about it, it's not as bad as basal for recurrence.
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Like you I've been voraciously consuming literature on Luminal B for weeks now, hoping to find some kind of answer in there. My understanding is that the proliferation rate (Ki67) is what really distinguishes B (Ki67>13.25%) from A (Ki67<13.25%) so it sounds to me like a cell behavior. One can be Luminal B and PR+ too - being PR- does not figure into the determination of Luminal A or B, but being PR- does increase recurrence rates even within the Luminal B category:
http://www.ncbi.nlm.nih.gov/pubmed/23022996
My original pathology report does not include Ki67, and treatment was based solely on the cancer profile. It is only when the Oncotype test was done (which includes Ki67) that the cancer profile suddenly changed - as did my stats. So I personally don't necessarily have a lot of faith in *just* the pathology report if it does not include more information (like Ki67, perhaps p53, and other tests too).
And yes, you're right, it's still not as bad for recurrence as basal (TN). Stupid cancer.
I suspect that my MO's concern about "higher than 18%" alludes to being PR- (see report above), but I don't know. I could be totally wrong. The more I try to figure this out, the less I actually know. :-)
All I *do* know is that this practice had never seen such a high Oncotype score before (which really surprised - and scared - me). I sometimes feel like a guinea pig to be researced. :-) So I put my faith in the treatment I've received, and try to make life changes to help along the way, and try not to freak out every time I get a twinge in my back or hip, and...and...and...and keep my fingers crossed a little, too.
Edited to clean up my pre-coffee typos...
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Oh Nancy - I hit some key and lost my long post in preview mode!! I will atleast attach the articles I wanted you to see and thank you for posting those that you did. Interesting that there is a further sub-classification of Luminal B. I wonder, is it a contiuum as far as PR-, as I am IHC 5% and positive, though low, on the Oncotype dx score.
http://www.rjme.ro/RJME/resources/files/510110085089.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326541/?tool=pubmed
I've always been concerned with, more so than our actual high Oncotype Scores, with the idea that some ER+ Luminal B's do not respond to endocrine or chemotherapy. Especially the endocrine therapy, because it has the best chance of attacking the cancer. Chemotherapy, I accept, is sort of a crap shoot, relatively speaking, in any case.
The last time I saw my MO, I asked her a simplistic question and got a simplistic answer. I wouldn't mind anyone else commenting on this exchange, but being node negative, I asked my MO if there was chance that no cells left the tumor site before surgery. She said "ofcourse." I took that as a positive. Afterall, even with high Oncotype Scores like ours, 80% have no recurrence in 10 years. If they are resistent to chemo and endocrine therapy, maybe this is a possibility?
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I had the same score as you. It is frightening to me but the doctor told me it just meant he had to treat me with chemo. This is my second time with bc. Last time eight years ago'with lumpectomyI had double masectomy, drains in for 32 days worse than masectomy. I did act first time and now carboplatin and taxotere. Able to work full time most days but I am exhausted. Anybody else feeling same and days after chemo very weepy, should I add another very. I am not a depressed person so this is hard on me. Have trouble climbing a single flight,of steps. Anyone else want to tell me about their fatigue and sadness.
Also Interested on info on high octotype test and what their dr said thanks all0 -
I am 44 and have a stage 2a, ER+/PR+/her2-, grade 3 i IDC. Tumor size 2.3cm and one of the two lymph nodes taken out has isolated tumor cells. My onco score is 31. I saw two different oncologists and they recommended two different regiments for me. One recommended me for AC - T (AC for 4 8 weeks 4 cycles and Taxol for 12 weeks 12cycles). Another one recommned me for a clinical trial (tic tac toe) of T(Taxotere)C (6 does for 18 weeks). I have to make a decision on what I should do. Does anyone have to make this type of decision? I found there was a lot of good posts on this side and would really appreciate your though. Wendy
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I do. I was just diagnosed as well - with a score of 34. I am currently taking radiation and the radiation oncologist says chemo may help - or the cancer may come back anyway - it seems kind of crazy to me. I think after radiation I am going to try alternative therapies. Have spent all day looking around. Most of the chemos used for invasive ductal carcenoma have been around since the 40s, 50s and 60s. Come on now, there has to be a better way!
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janamarlowe...What was your DX, my score was 34 also.
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Hi ladies, I'm due to start the Gerson Therapy at the beginning of November. My score was 44 and I've had surgery, chemo and radiation. It's a two year therapy. Good luck with whatever you decide to do.
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Janamarlowe,
Is there any chance you misunderstood your oncologist? Having a high oncotype score is an indicator that chemo is likely to help. It is not a death sentence. It just means that there is a clear benefit to taking chemo for those of us with a high oncotype dx score while there is no benefit for low oncotype scores. I'm all for the alternatives, but maybe slipping some chemo in there first is something to consider?
Also, for those of you who think that hormonal therapy doesn't work as well for us, keep in mind that the original studies looked at tamoxifen. There are some studies that indicate that aromatase inhibitors work better - especially for those of us who are er+/pr-. Also, those studies were done with older chemo regimens, and the newer regimens also provide for better survival.
I did 4 rounds of TC and still here with no signs of recurrence 6+ years later. I never regretted for a minute doing the chemo and it wasn't really all that bad.
S.
edit: Just had to add that for those of us in the high oncotype dx group, the absolute benefit of chemo for survival over the first 12 years is 28%. That's huge! Said another way, if you take 100 women with high scores and give them chemo, 12 women will have a metastasis during the first 12 years. Without chemo, that would be 40. 28 lives saved :-)
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