Long term "high oncotype test" survivors
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I guess those other 5% did not need ER to grow so the danger is if any of those escaped the tumor then theoretically they could grow triple negative mets elsewhere?
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That's, sadly, what I am thinking KathyL624. I did have 5% PR+. Maybe they were those 5% LOL. Doesn't a PR+ work like ER+ with estrogen blocking drugs (<< new question). And now a new thought, and why ER+ PR- gets a much higher oncoscore than a ER+PR+. There is no backup for the ER- cells!!
And all I can think of right now, when I ask questions like this, my MO Gynecologist saying "the answer is complicated."
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Hi QuinnCat,
Here's a paper from Nature last year that examines the role of progesterone receptors in breast cancer. It's very technical but suggests that PR modulates ER activity in way that reduces proliferation of tumor cells. At least that's how I interpret it. GrandmaX3, would love to hear your thoughts - and those of others.
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I am trying to stay off of BCO and clear my mind of the whole BC trauma. I cannot help but jump in here because like others, Grandma's explanation is the first one I've heard that actually provides any real information.
Can anyone help me with this?
MY two path reports were both highly ER+ but oncotype said ER -. The discrepancy is disturbing. My MO said I should still take AIs and be treated as ER+.
Does this make sense? How exactly did I go from highly ER+ to ER-? What are this implications for my health?
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I have my 5 year checkup next week with a mammogram. I had scares earlier this year one in reconstructed breast and other in spine both check out fine. I never did the recommended chemo after dx and doctors expected a recurrence. I am off AI drugs and feel great now. I hate the visits especially with 2 scares this year. I just want to live my life without the cancer cloud hanging overhead.
My oncodx was 34, I have lived with that damn number for 5 years. I am doing well only some minor arthritis I think was from AI drugs.
Dont let your life be dominated by the oncodx score it is only a tool to guide treatment. It does not own your soul.
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Meow.......
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Warrior,
The path report and Onco DX measure and report out the information differently. Any direct comparison is apples to oranges.
On the pathology report the measurement of positivity is from 0 - 100% for ER and PR positivity. So anything above 0 is some level of positivity. On the Onco DX report, the scale is say from 0-12 (it's close to 12 or so), but whether it is positive or negative depends on where your tumor rests in the middle of this range relative to how it will increase or lower your overall score. Without digging out my old paperwork this early in the morning, say that anything above a 6.5 in either ER or PR helps give a lower score (good on Onco) while anything below 6.5 pulls the score higher. So anything above a 6.5 is shown as + and anything below as - . So you could have a 75% ER+ tumor that hits 5.5 on the Oncotype show as a -, but it is still positive ER, but causes you to have a higher Oncotype score.
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Doxie! Got it. Thank you so much for that explanation. I am almost 3 years out and it is one of those questions I've continued to ruminate over. It finally makes sense.
Meow - I hope that cloud dissipates for you quickly and this is another routine check up for you.
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Hi Meow,
Congrats on doing so well!
Question: Did you notice much of a difference in how you felt after you stopped the AI? How so? I haven't read much from women after they've gone off, and I'm wondering if it makes any difference to their quality of life.
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My 2 cents worth. My Oncotype score was 11. I had IDC Stage 1b, Grade 1. Lumpectomy followed by 33 Rads treatments. Took Tamoxifen. 5 years out this past August.
We have a radiologist in our support group at church and I asked her about the Oncotype test. Should I be encouraged because I had a low score? She said absolutely. I dodged chemo because of that test. No guarantees of course but still encouraging.
We all have to make our own choices. After all it's our body and our life. I was just afraid not to do any and everything for treatment and prevent a recurrence. Btw Tamoxifen wasn't horrible for me but I have noticed I have fewer leg cramps. I do get take it anymore. ONC said 5 years and that's it.
Diane
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After being off AI drugs I feel so much better. One reason I retired early was I felt I couldn't do an 8 hour day every day. Fatigue, headaches, bone aching is so much better. I think the arthritis in my back and neck is not reversible at this point. Still have ear ring but my severe dry eye is so much better.
After 2 years of retirement I feel like I feel good enough to work again but I doubt anyone would hire me. It is a little scary to live off savings especially with one kid living at home but working and another a junior in college.
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Thanks, Meow. My symptoms on an AI haven't been terrible, but my bone mineral density did plummet. Prolia seems to be helping with that.
I like to think, though, that in another 3 years when I'm finally at the 5-year point, I won't have so much fatigue post-AI. I, too, have considered retiring early, or at least cutting back, in part due to fatigue.
One recent large RCT indicates that more than 5 years on an AI is not particularly helpful for post-menopausal women.
A randomized, double-blinded, placebo-controlled clinical trial of extended adjuvant endocrine therapy (tx) with letrozole (L) in postmenopausal women with hormone-receptor (+) breast cancer (BC) who have completed previous adjuvant tx with an aromatase inhibitor (AI): Results from NRG Oncology/NSABP B-42
Mamounas EP, Bandos H, Lembersky BC, Geyer, Jr CE, Fehrenbacher L, Graham ML, Chia SL, Brufsky AM, Hennessy BT, Soori GS, Dakil SR, Seay TE, Wade, III JL, McCarron EC, Paik S, Swain SM, Wickerham DL, Wolmark N NRG Oncology/NSABP (NSABP Legacy Trials Are Now Part of the NRG Oncology Portfolio), Pittsburgh, PA; UF Cancer Center at Orlando Health, Orlando, FL; University of Pittsburgh, Pittsburgh, PA; The University of Pittsburgh Cancer Institute, Pittsburgh, PA; Massey Cancer Center, Virginia Commonwealth University, Richmond, VA; Kaiser Permanente Oncology Clinical Trials Northern California - Vallejo, Vallejo, CA; Southeast Cancer Control Consortium, Goldsboro, NC; British Columbia Cancer Agency (BCCA), Vancouver, BC, Canada; Cancer Trials Ireland (Formerly known as Irish Clinical Oncology Research Group - ICORG), Dublin, Ireland; Missouri Valley Cancer Consortium, Omaha, NE; CCCOP, Wichita Cancer Center of Kansas, Wichita, KS; Georgia NCI Community Oncology Research Program, Atlanta, GA; CCOP, Central Illinois, Decatur, IL; MedStar Franklin Square Medical Center, Weinberg Cancer Institute, Baltimore, MD; Severance Biomedical Science Institute and Yonsei University College of Medicine, Seoul, Korea; Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC; Allegheny Health Network Cancer Institute, Pittsburgh, PA
Background: Extending adjuvant endocrine therapy (tx) after 5 yrs of tamoxifen (Tam) with either Tam or an AI improves disease-free survival (DFS) in early-stage breast cancer (BC). However, optimal duration of adjuvant AI tx beyond 5 yrs is unknown. NSABP B-42 aimed to determine whether 5 yrs of letrozole (L) v placebo (P) improves DFS in patients (pts) who have completed 5 yrs of hormonal tx (with either AI or TAM→AI).
Methods: Postmenopausal pts with stage I-III, hormone-receptor (+) BC, disease-free after 5 yrs of either AI or Tam for ≤3 years→AI for the remainder of 5 yrs, were randomized to L 2.5 mg or P daily for an additional 5 yrs. Stratification was by pathological nodal status, prior adjuvant Tam or not, and baseline dexa T scores (>-2.0, ≤-2.0 SD). Primary endpoint was DFS including local, regional, distant recurrence (DR), second primary cancers, and deaths from any cause as first event. Secondary endpoints included overall survival (OS), BC-free interval (BCFI including recurrence or contralateral BC as first event), DR, osteoporotic fractures (OF), and arterial thrombotic (AT) events. Differences in DFS, OS, BCFI, DR, OF, and AT between L and P were assessed by the stratified log-rank tests and Cox proportional hazards models. Statistical significance level for DFS was set at 0.0418 as per statistical plan.
Results: From 9/06-1/10, 3966 pts were randomized (34% were <60 yrs, 57% were node-negative, 39% received prior TAM, 14% were HER-2 neu positive). Median follow-up for 3923 pts included in efficacy analyses was 6.9 years. As of 8/16, 631 DFS events occurred (L=292, P=339); L did not result in statistically significant increase in DFS v P (HR=0.85; 95% CI 0.73, 0.999; P=0.048), even after adjusting for age or surgery type; 7-yr DFS was L=84.7% and P=81.3%. There were no significant interactions between treatment and stratification variables. 310 deaths occurred (L=164, P=146); there was no statistically significant difference in OS with L v P (HR=1.15, 95% CI 0.92, 1.44; P=0.22); 7-yr OS was L=91.8% and P=92.3%; 306 BCFI events occurred (L=127, P=179); L v P resulted in a statistically significant 29% decrease in BCFI events (HR=0.71, 95% CI 0.56, 0.89; P=0.003); 7-yr cumulative incidence (CIn) of BCFI was L=6.7% v P=10%; 175 DRs occurred (L=73, P=102); L v P resulted in a statistically significant 28% reduction in DR (HR=0.72, 95% CI 0.53, 0.97; P=0.03). There were 169 OF (L=91, P=78). There were no significant differences in time to OF with L v P (P=0.27). CIn of OF through 7 yrs was L=5.4% v P=4.8%. There were 127 AT events (L=69, P=58). Treatment with L did not result in an overall statistically significant increase in AT events compared to P (P=0.33). CIn of AT through 7 yrs was L=3.9% v P=3.3%.
Conclusions: After 5 yrs of an AI or TAM→AI, the beneficial effect of extended tx with 5 yrs of L on DFS did not reach statistical significance. There was no significant improvement in OS with L but L provided a significant improvement in BCFI and DR.
Support: U10CA180868, -180822; UG1CA189867; Novartis.
Session: Oral Session: General Session 1 (8:45 AM-11:15 AM)
Date/Time: Wednesday, December 7, 2016 - 9:45 am
Room: Hall 3W,0 -
Yes I saw that. I am suprised to hear bco members do 10 years of AI. I have the best BC oncologist in Seatlle and he says 5 years only. Which is what studies are showing. I guess if you did 5 years tamoxifen then did 5 years AI. But nothing suggests AI's beneficial after 5 years. I only made it 4 years. My extremely dry right eye was so inflamed it appeared to be a result on exemestane because it didn't get better until I stopped the drug.
Just had mammo Friday everything looks good. I see my mo on Monday I will see what he recommends. He might think I should try to take it for 1 more year. It so hard because I finally feel better.
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This is encouraging news. I'm at 4 years 4 months on AI with an oncoscore of 39 and my MO (who is linked in with OHSU in Portland) was still "iffy" on going past 5 years. Waiting for more info. Not ready to do BCI. For some reason, the topic of doing AI past 5 years did not come up on our last visit in October, but she did mention Prolia of having benefits for preventing recurrence. She suggested I research that as I have no bone density issues. Anyone aware of that info on Prolia? I would not be excited about the negative SEs of Prolia though.
I keep hoping that if I got of Exemestane, my hair would come back on the top of my head, but maybe 5 years later it wouldn't. I still have hair, but much thinned.
Meow - interesting on your eye. I have one eye that I'm constantly itching and that the vision is deteriorating faster than usual (I'm nearsighted). My Rx for eyeglasses from 2015 is already out of date for that eye. I thought it was just the skin on my eyelid being dry, but now I wonder if it isn't involving my eyeball too?
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I've had dry eye problems all the while on AIs, mostly exemestane, but they were the same on arimidex. It turns out the problem was clogged oil glans in my eye lids. If I use hot compresses and lightly rub the eyelash area of the lids (when bad baby shampoo too), this releases the oil that coats the eye, keeping tears from evaporating. It has made a huge difference. Now I can use drops when it gets really dry in the winter and I'm quite comfortable.
I think the problem started during chemo in part from eye shadow. Now I don't use it anymore.
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Doxie - mine started during/after chemo and have attributed to sun block, but since it only affects one eye, it is probably something more to do with some SE of chemo. I've had to stop wearing sun block which isn't the smartest thing to do either. I will try some of your suggestions.
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QuinnCat,
Regarding benefits of Prolia wrt recurrence, I found this on the ASCO Post. It's based on an abstract presented at the 2015 SABCS and the paper may have been published by now.
https://www.eventbrite.com/e/best-of-san-antonio-b...
Denosumab Reduces Recurrence Risk
Targeting the bone in breast cancer may have more than bone-preserving effects. Results from the randomized, phase III ABCSG-18 trial, which followed 3,425 patients for 4 years, showed that denosumab (Xgeva) reduces the risk of recurrence by about 18% among postmenopausal women with early, hormone receptor–positive breast cancer who are taking aromatase inhibitors.7 Disease-free survival was 83.5% in the denosumab arm and 80.4% in the control arm (HR = 0.816; P = .0515). In the sensitivity analysis, which censored patients at crossover, the disease-free survival was 84.3% with denosumab and 80.3% with aromatase inhibitors alone (P = .0419). Exploratory subgroup analyses suggested that the benefit is greater when denosumab is started early, along with the aromatase inhibitor, and that the benefit is greatest in patients with larger tumors and ductal histology. Risk of fracture was also reduced.
Denosumab at 60 mg, administered just every 6 months, reduced the risk of fracture and at the same time improved survival. The result mirrors findings from the Early Breast Cancer Trialists' Group's meta-analysis of bisphosphonates in early breast cancer, which showed a 14% reduction in risk among postmenopausal patients (P = .002) and a 17% reduction in the risk of bone recurrence overall (P = .004).8 The results are also in line with a meta-analysis of the similar bone-modifying agent zoledronic acid, showing a 15% reduction in mortality (P = .047) and a 34% reduction in fracture risk (P < .001).9 The good news is that denosumab also demonstrates this benefit and has less toxicity than zoledronic acid. There is now a large body of data that is building for the use of bone-modifying agents in early breast cancer, and this should definitely help our patients.
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hi all - regarding the eye problems, I was diagnosed with Episcleritis in the right eye in February this year, after experiencing a blood shot eye 2 weeks apart with no apparent reason. The opthalmologist speculated that Anastrazole may have played a role. It occurred in the left eye in August; I went back to the doctor and he said I may be dealing with this for the duration of AI, and possibly longer term. I went home and googled AI's and eye diseases and found a researcher, Alvin Eisner, who is focusing on breast cancer drugs and ocular effects. You can google him and find interesting papers; this is a good one to start with: "Watch for Ocular Effects of Breast Cancer Drugs By Barbara Boughton, Contributing Writer Interviewing K. V. Chalam, MD, PhD, MBA, Alvin Eisner, PhD, and Rick Fraunfelder, MD, MBA."
Interesting quote from Dr. Eisner in the article: "There is theoretical potential for AI-induced estrogen depletion to increase the long-term risk of serious eye disease." "He said that his research indicates that breast cancer patients who take anastrozole are more likely to have retinal hemorrhages than tamoxifen users. These hemorrhages may be the result of excessive traction on the retina, caused by estrogen depletion.5 Related effects, such as posterior vitreous detachments, may occur during the natural menopausal transition, he said. Dr. Eisner noted that it's possible to assess the tractional effects of AIs through the use of OCT. Other possible effects of AIs include photopsia and increased incidence of floaters, as well as dry eye.
Food for thought.
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MargoChanning - thank you for all of this! I was postponing the glasses Rx for another year, but monocular vision is taking over for long distance now (i.e. closing one eye to see) as well as close work with my relatively new glasses. I do get health checks yearly because I'm brca2+ and was told to do so for melanoma. No problems with my retina and I totally forgot to tell the Ophthalmologist about my dry eye (I was previously going to an Optometrist for med checks). The Optometrist suggested the usual eye drops.
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This is all great info to exchange. I really believe in anastrozole and exemestane in cancer treatment but beware. I am interested to hear others have had eye problems. My eye dictor was baffled why only one eye was affected my mo knew right way it was the exemestane. He was right it is so much better and i haven't been doing the eye drop regiment but was trying warm compress it helped but getting off the drug made all the difference. I hope you all continue to enjoy cancer free living. QuinnCat getting that high oncodx number is like a kick in the stomach.
Best wishes to all of you.
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I am now 5 years and my oncologist put my status as closed see him yearly no more hormone durfs.
Yippeee I am going to enjoy feeling good as long as I can.
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Meow,
Congrats! Wishing you many, many years of feeling GREAT!
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Thank you. And thanks to everyone of you who helped me get to this point.
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Wow meow! Congrats. Is that 5 years from your surgery date or from your hormone blocker date?
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My dx was Oct 7 2011 surgery Nov 2 2011 and about 5 years exactly from hormone Dec 15th 2011. Although I really did only 4 years on AI. But my mo actually said good enough.
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Interesting...my dx should have been closer to 10/9/11, but ended up being 11/11/11, then my brca status changed my lumpectomy from 12/7/11 to a MX and PBMX on 1/20/2012. You didn't have chemo???? I thought you had a high Oncoscore Meow (you didn't miss much lol). I didn't start AI's until 8/2012.
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Congratulations, Meow - may you have a long and cancer free life!
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Quinn, they twisted my arm to do chemo. They said 23% chance of recurrence distant metatisis in 10 years on tamoxifen it could be cut to 10% if I did ACT. But I went directly to AI anastrozole. I read in a study that ER+ and PR- showed a 50% reduction in recurrence (it didn't have time frame or whether local or distant) with anastrozole vs tamoxifen. It also went on to say ER+ PR+ didn't show much difference between use of anastrozole vs tamoxifen.
I think I was afraid of chemo and potential serious side effects than I was of the cancer. I felt a little ridiculous going against the advice of one of Seattle's best BC oncologists. But he said to me we could do CMF but I couldn't do it. He said ok you will be under high surveillance and agreeded with the treatment of anastrozole.
Also my mitotic rate was 1, nottingham scores a 5 & 6. I had one ILC one IDC but the treatment would be the same. In looking back and my research I am glad I got on the hormone therapy right away. I believe it does a good job but bad for your overall health. I was able to escape so far with mild arthritis in L5 and L6 in my spine ringing in one ear. The other symptoms are gone since I stopped the medicine.
Now I take no prescription drugs. I credit my overall good health to exercise mostly and a good diet and reduced stress. Blood pressure and cholesterol are right where they should be. Before I started exercising regularly about 7 years ago my both my blood pressure and cholesterol were high to the point my gp wanted to medicate.
It was terrifying to get an oncodx score of 34 but the numbers just didn't add up to me. I wish I could have seen the details of how I got assigned that number. I do know my er was 95% and pr was less than 1%.
My surgeon asked me to look at the information as an engineer and mathematician and I did and said no chemo I like the idea of getting the AI right away.
Sorry for the long post but many have asked me if I would regret my choice of no chemo and I believe I made an informed decision with the data and also gut instinct.
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Meow - a friend of mine had a test done to determine if she should continue taking Arimidex after 5 years. It wasn't the Oncotype test from what I understand but it did provide the likelihood of a recurrence based on percentages. My friend did have a very aggressive BC and had a double MX.
My ONC said taking it longer might cause a side effect like a clot. Plus my BC stats didn't warrant continuing on.
I'm also positive she would have pushed to have me do chemo if my score had been high. My call of course but I would have caved out of fear
Diane
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It is a hard decision these drugs can really take a hit to your body. My oncologist hasn't seen anything compelling on the use of AI drugs past 5 years. I haven't seen any studies with conclusions that suggest more than 5 years for recurrence purposes. Yet people are doing it so something is driving that extent course of treatment.
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