Long term "high oncotype test" survivors
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Rimroc, I agree with scrafgal. You mentioned already being 5 weeks out from surgery. I started chemo at 6 weeks. I also agree you fall in that 60 day window. Maybe a nurse navigator can help direct you to a second opinion? It's really important that you feel comfortable with your plan. Maybe your breast surgeon can facilitate things along and help line up a second MO opinion?
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thanks Scrafgal-- I appreciate your insights. The way I see it, the procedure that most disturbed the intact tumor was the core biopsy, which was May 22 or >60 days ago. The mastectomy "should" have taken out the entire mass of glandular tissue, tumor intact. So if any cells escaped to cause trouble, I would guess it was from the biopsy.
My plan of the moment is to start chemo in the next week or two, and go for a second opinion when the appointment finally rolls around. If I hear profoundly different results, I can always just leave the practice I'm in locally...but if I get the same basic message I guess I'll just stay the course. So much is so indeterminate...very frustrating and unsettling.
thanks again for your reply
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RimRoc,
I'm sort of in the same boat as you. My breast biopsies stated I was Er+, Pr+ and Her-, grade 3, stage 1. I had lumpectomy and my lymph nodes(4) were clear. Then I waited for onco-score to come back. It was a high 44. Took me by surprise because my MO thought I wouldn't need chemo as I caught it early. However, my breast surgeon thought it was strange that my MO wasnt preparing me for chemo since I was a grade 3, usually a sign of triple negatives. So my oncoscore also showed me as triple negative when the actual tumor was dissected. When I see my breast surgeon she said the biopsies have the highest chance of human error and I was weakly positive. Therefore I should go by the actual tumor results of triple negative. My MO says the opposite, he said we must treat as positives. I did 6 months of AC+T chemo, and 20 days of radiation. I did get my ovaries taken out but not because I believe I'm positive hormones but because I simply didnt want a period anymore! So my big question is do I take the Arimidex or not. My DEXA scan shows me having osteopenia. I wish there was one guideline and all the docs followed it cause I'm so confused as to why I got AC+T and others didnt.
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Dang Susie your doctors are all over the place.
I had osteopenia too - now have osteoporosis. Ugh. I took Arimidex for 1 year and then my MO put me on Tamoxifen. I had to question her about it because Arimidex attacks the bones so I had a year of that. I would talk to my MO and express your concerns about taking it.
Thing is they should already know likemy MO.
Diane
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I am a 7 year survivor with oncodx score 34 for invasive cancer. I did 4 years AI drugs no chemo.
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Good morning to all..I was dx stage 2 18 months ago-lumpectomy-sentinel node positive--grade 3; hormone positive-was offered 4 TC or DD ACT- chose tc as I was 68-have 15 year hx mild hypertension- a cardiac risk factor-and on researching learned the ACT would have higher risk of hair loss-this more upsetting than the dx- my oncotype was 45--I chose the Tc and did Cold capping with Penguin caps= saved 75-80 % of my hair--I accepted that the TC might be about 3 percent less effective for 5 year disease free statistics,but willing to be at peace with this choice as saving my hair made all the difference for me coping emotionally. Had I been 50 years old , may have chosen differently.
I then had full course of radiation including nodes and "boost" to the tumor site-I have just passed the 1 year point on Letrozole with only mild side effects. I do have some mild hair shedding starting at 5 months in-hoping it will level off- will probably have to stay on it for 7/8 years per the newer guidelines.
I am also in the Pallas trial on the letrozole only arm' evaluating the addition of Ibrance for prevention of recurrence in early stage-will be another year and a half before results start coming out.
We each have to make the choices we can be ok with. I am disease free now- a year and a half out and moving on with life.a day at a time..best to all,Kaylie
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Just checking in. I was diagnosed with stage 1 L breast cancer in May of 2018. I had had DCIS in that breast in 2013, so this was a recurrence. Did a mastectomy and was initially told I should just take an AI and I would be done. At my insistence, we ordered an Oncotype DX and it came back with a recurrence risk score of 50 and classified my tumor as TN. My trust in my MO is pretty low as she had said I needn't bother with the Oncotype. Now I pretty much get a second opinion on everything.
I did one treatment of TC back in August 2018 and had terrible allergic and neuropathy reactions so my MO switched me to 3 rounds of AC. So four rounds altogether. I sure hope that was enough!! I did lose all my hair. I have to say, now that I am more than 5 months post last chemo treatment, I feel just fine although my stamina is less than before all this started. I am continually saddened when I look in the mirror. Even tho I now have an acceptably stylish short gray hair do, it is NOT my usual hair and it is a reminder of having cancer. Ugh. All I can do is wait for it to grow more.
My MO started me on tamoxifen as a bone scan showed two vertebrae with osteopenia/osteoporosis. My primary care doc laughed at the idea of an osteopenia dx as the over all DEXA score was well within the normal range. He declined to treat me for osteoporosis.
Since my Oncotype was 50 and I was classed as TN by Oncotype (and my biopsies put me at only 15% ER+, 0%PR+ with only weak staining), I feel like all the estrogen modulators are pretty much a waste of time. That said, I don't find it bothersome, so I'll take the damn pill. Maybe it will help prevent a new cancer in the breast I still have.
What is REALLY bothering me (besides my hair) is this business of cutting out alcohol. I really really enjoyed (past tense) my 1-2 glasses of wine everyday. Now the research is showing for a woman my age (67), it raises my recurrence risk by about 40% (so from around 13% to around 18%). It seems tougher to give up that daily glass of wine than to go thru all the crap of the past year. I guess because it is "forever" and not just for a relatively brief period.
I find it hard to stop thinking about the fact that I had cancer and am at a non-trivial risk of recurrence. One the one hand, it has been less than a year, so maybe my degree of preoccupation is pretty normal. How long did it take you guys to quit thinking about cancer and recurrence on a daily basis? A year? Longer?? Any idea of "normal" on something like this?
Anyway, just venting. I hope everyone else is feeling well!!
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hi rimroc, Diagnosed 14 months ago I'm 9 months out from chemo. I still walk by the mirror and I'm far from the old me. But at the same time I remind myself it's just stage. I'm thankful for feeling good so the hair thing doesnt bother me too much. Im thankful its growing and just make the best of it.
Do I think about cancer and recurrence every day? Yes, but it enters and leaves my mind pretty quickly. I dont obsess and it's not in the forefront of my mind. Worrying wont change anything. I take each day as it comes. I dont want to worry until i have to worry. Easier said than done sometimes. Everyone is different. Some might disagree but i say enjoy life and have that glass of wine from time to time.
Exercise has helped me alot. How are you doing there? Also, if you feel you need to ask your pcp about an antidepressant please do. I will never forget something another member said. She said it makes her "care less". Sounds like great place to be. Hugs to you deb
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RimRoc I'm with you--I share some your same feelings of disorientation. I'm really doing okay mentally, but if I let myself, I can spiral into anger about everything I've been through. My Oncotype was 59 and my tumor was also Grade 3, which is another source of my anxiety, of course. I kept my hair through chemo because of Cold Capping. However, I have a completely new torso, with discomforts and weird sensations. The right side didn't want to stretch much because of previous radiation, so my new Foobs are rather small. It's disorienting to have a new shape, and weird to have the fake things in me.
In my brain is a little war between 1. Gratefulness for evidence-based medicine and a good chance of being cured, and 2. Fury that I've had so much trauma and that my Self is so different now, inside and out. Oh, plus the ongoing terror of a recurrence, of course.
I concur with DebAL that exercise can help in all ways; mental and physical well-being. And, do ask your primary doc about an antidepressant. You deserve to live with some joy. We've all been through a ton of trauma. It seems pretty obvious that it will take its toll on us in many ways.
I share your annoyance about the alcohol restriction. My husband and I barely ever drank a drop for 20 years when we had children at home. In these later years (I'm 61), we started enjoying 1-2 drinks maybe 3 times a week. Now I feel horribly worried about this. Ha ha, not quite enough to stop enjoying the drinks, lol.... My MO said three drinks a week is okay, and more is not. It feels like a huge sacrifice to give this little pleasure up. So, if I go ahead and have 2 drinks about three times a week, which I usually do, I'm doubling the amount that my MO said was safe. Terrible of me. This means that if I have a recurrence, I'll blame the martini + glass of wine that I've enjoyed so much. Or, if I comply with the recommendation, and hardly ever have a drink, and get a recurrence anyway, I'll resent the absence of those Fun Units. GRRRRR
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To my high-RS friends who are a few years into their AI treatment - what advice are you getting from your medical specialists on length of time to remain on? The trials results so far are not particularly clear-cut, and they often don't specifically address our high-scoring group. Obviously, I'd love to ditch the stuff after year 5 if it doesn't mean incurring a high risk of recurrence.
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nottoday - how strong was your ER? I think that might be more of a factor. In my case, because oncotype essentially classes me as TN my team advised against tamoxifen at all (my ER was about 10% on the pathology originally, less than 10 on the repeat pathology report)
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Hi nottoday! Have you considered using the Breast Cancer Index test? Might help in your decision-making.
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bump
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Still doing ok. Year 8, oncodx 34 chose no chemo did 4 years Anastrozole and exemestane.
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Glad to hear it, Meow13!!
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did 4 years, sounds like a prison sentence. I feel much much better although not 100% after stopping been off over 3 years.
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You go, Meow13!
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As soon as I am menopausal I will switch to an AI.
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Bumping...because I see postings from people who might find this thread useful...
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Thank you for bumping this post. I got my oncotype score today (50) and my tumor is grade 3 with weak ER (negative PR and HER-2, though on the oncotype it is triple negative). Hard not to look at it and just give up. What started as "We caught it early! Highly treatable and curable! Stage 1!" has sure taken an awful turn.
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I know that feeling...that's why I bumped the thread.
My score was 46 and I cried right in my MOs office. Then he reminded me of something important that made me feel much better: "The point of the test is not to give you a prognosis but rather to guide you toward an effective treatment. The score means that chemo will be very effective and likely a hormonal therapy. If you do the treatments, then the 46 no longer defines you because the treatments will reduce the recurrence risk significantly."Then, he told me to hand over the oncotype report because, at that time, I would just keep rereading it and feeling bad. He said it's just time to get started on making that report a mute point. I started chemo 2 days later and never looked at that report again.
I am 2.5 years out from diagnosis. At my last appointment, my MO hugged me and told me that I was doing just great! I feel great!
You will get through this too. Don't get stuck on that number. Stop looking at the report. Toss it for now. Your MO has a copy in your record if it is needed in the future.
You can do this. You are not alone in having a high oncotype.
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Fairydragonfly
I am sorry to read that you lost both parents to cancer last year. I hope that you have loving support from friends and family. I lost my Dad at 30 and mother at 40. I am turning 53 in 2 weeks. It still hurts but it gets better in time.
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Fairydragonfly I'm so very sorry you're facing all this, AND my deepest condolences on losing your parents to cancer last year. That's just awful, and this is SO MUCH on your plate all at once in life.
I have a DX quite similar to yours in quite a few ways: size .9 tumor, Oncotype 59, grade 3, same chemo as you are scheduled to begin soon, also 0 positive nodes, also weakly ER+ You can read this on my signature and on my public Biography linked to my name.
One way to look at a high oncotype score is to feel assured that there IS benefit to going through chemo. When my MO pitched it to me that way, saying, "This is a tool that we have for you that has a high chance of being effective for preventing a recurrence," I felt more able to face it. Compared to The Old Days, when it was more guesswork. Oncotype DX is a helpful, additional prognosticator that didn't used to exist.
My oncologist gives me a 90% chance of being cured with my current TX plan. I am post-menopausal, so TX includes taking an AI, which he says has the most benefit for me of all of my treatment, and I am on an AI for at least 5 years (assuming I can tolerate it okay).
Has your MO given you any information about your final post-surgical staging, or any % chance of a cure with your treatment plan, or a % chance of a recurrence? I ask because I'm trying to figure out from your worried words whether you are just terrified and worried in general, or whether your MO has specifically painted a bleak picture.
Terrified and worried and overwhelmed is absolutely normal to feel. It will get better. You'll get through this.
By the way, I kept my hair during chemo, on TC x 4, by Cold Capping. Lost maybe 30% of it, but no one could tell! There's a Cold Capping thread on this site.
If this helps at all, I got through chemo, one day at a time, with excellent support on managing side effects, from a great oncology clinic, and good support from this community.
Warm and very supportive wishes and empathy to you.
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I feel for you ladies with high Oncotype scores but I also like the response of your oncologist Scrafgal. It certainly does confirm what your treatment should be. I had a low score of 11 which allowed me to dodge chemo but I did do 33 radiation treatments and 5 years on Tamoxifen. God willing I’ll be 8 years out in August.
There are no guarantees low Oncotype score or not but there is reason for optimism
Diane
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Edwards750, congratulations on thriving 8 years! Wishing many more for you!
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I hate getting a number, it is really not that helpful.
All it means is we are high risk as much as 30% of cancer return. It is just an indication if chemo might be more helpful than tamoxifen or AI drugs. So the difference from getting a score in the 50s is about the same as getting a score in the 30s. Certainly, does not mean you are doomed these scores are based on curve fitting equations based on tumor characteristics. Nothing more.
The high risk group gets the most benefit from chemotherapy statistically than lower scores.
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To be honest..my score motivated me during my difficult times on chemo that, of course, happened toward the end of the 6 months. I was motivated to get the 46 monkey off my back. Statistically speaking, with chemo and tamoxifen, my risk goes from about 31% to 12%...it will go down more when I switch to an AI. No guarantees...but not even the undiagnosed have guarantees. We do the best we can and thinking about what the test really means helps me win the battlefield of the mind where cancer fights hard to conquer you@
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Scrafgal--very well spoken- My onc score- almost same as yours-45 --frightening at first. Thanks for your input- I just passed my 2 year mark post dx and doing fine--then there is the ever present thought----"so far" -that fear and worry never goes away but as time goes on it becomes more manageable----day by day -week by week and month by month--life does go on--
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thanks, kaylie57410...I sometimes think about recurrence too... recognize very quickly when my thoughts are heading in that direction and "change the channel" by doing something enjoyable or thinking about an upcoming fun event. Some days are easier than others but I just cut myself some slack for being human about this experience.
I also volunteer at my cancer center ( visiting patients in the hospital) and, believe it or not, in doing so weekly, I am reminded of how far I have come in this ongoing process.
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Thank you for the thoughtful acknowledgement of my loss. My mom was sudden. She passed away within ten days of being diagnosed (pancreatic cancer) in January 2018. My dad had stage 4 lung cancer for almost two years before passing away in August 2018.
HikingLady - I fully admit that my bleak outlook is self-induced. I have such a strong family history of cancer on both sides of my family that my diagnosis (in my head) was inevitable. In fact, excluding my younger sister and her son, only two other family members didn't pass away from cancer. Until my diagnosis, the youngest someone was at diagnosis was 53 (she passed away at 53 as well).
I have lots of information about the tumor post surgery. Stage 1c, grade 3, clean margins with no lymph node involvement (4 removed) and no evidence of spreading. Tumor was 1.1 cm, actual tissue removed was 7 cm. The biopsy prior to surgery indicated ER positive (weak staining, 50-60% receptors), PR negative and HER2 negative (though reviewing the pathology report, it's actually in the borderline range). ER and PR were not retested on the actual tumor, but HER2 was and came back negative (although I think the result is borderline again using the same test ISH, it's showing HER2 / CEP17 Ratio: 1.7). Surgeon indicated that there was a 5-10% chance of seeing cancer again in my lifetime.
The first discussion with the oncologist provided a different story. She indicated there was a 20% chance or more of cancer returning (including outside the breast). She felt that chemotherapy and endocrine/hormonal therapy would reduce that risk by at least half. Most of that reduction came from both rather than hormonal therapy alone (I think she said that was in the 3 - 5% range). The main concerns are the high grade, weak estrogen and lack of progesterone given my age (43 - not in menopause). I asked to have the oncotypeDX test done since we still had time.
The results of the oncotypeDX test indicate a 39% chance of distance recurrence at 9 years and ER/PR/HER2 negative. It just seems that each successive appointment brings worse and worse news. I'm still waiting to hear back on my genetic testing. Given how things are going, I fully expect it to come back with mutations.
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