How Many are doing 10 years on Aromatase Inhibitors
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I am also confused about the Oncotype ER number vs pathology--two different pathologists rated my tumor 99% ER positive, but the oncotype level is 9.2, which is still positive but not near the high end of their scale. Does anyone know what that discrepancy means?
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In response to the questions on the previous page about the paper by Wolmark et al.:
Ok, I think I understand now. If your ESR1 score (provided on the oncotype report) was 9.1 or greater, than your risk of later recurrence correlates well with the RS. If your ESR1 score is less than 9.1, then there is no correlation. So if you have an ESR1 score of 10, for example, and a low RS, then you have a low chance of late recurrence, and the risk increases with higher RS. If your ESR1 score is below 9.1, then the RS works well for the first 5 years but is not a good predictor of later recurrence. What this does not mean is that those with high ESR1 score are more likely to have a recurrence than those with low ESR1 score, it's just a saying that the RS score is more reliable after 5 years if you do have a high ESR1 score.
hope this helps!
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Thank you, grandma3X! I am just below the cutoff point with my ESR1 of 8.9 and a little bit above the cutoff point for intermediate RS with the score of 19. So the study is not applicable to me...
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lago,
I too would worry with your large tumor.
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I don't worry. That's her job. Granted I'm off the ESD as of May due to SE issues. Did the 5 years but she may revisit.
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My RS is a 10 and my ESR1 is 10.2, however I'm still going to have my MO do the Breast Cancer Index test just to make sure I don't have to take Arimidex for 5 additional years.
Thanks for bringing up the study and explaining it so well
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Are you sure Grandma3x? I think it clearly says low score, low chance of recurrence. But I'm reading it as the higher your ESR the more you need to continue therapy if you had an intermediate or high score. Which makes sense to me because those would be people with highly estrogen driven tumors and more risk factors like proliferation rate. Wish I could find the full study.
Editing: Went back to the BCO explanation:
This study suggests that there may be some women diagnosed with stage I or stage II, hormone-receptor-positive breast cancer with low ESR1 expression that may be able to take only 5 years of hormonal therapy. While these results are promising, more research is necessary before doctors know for sure which women can safely have only 5 years of hormonal therapy.
So using Lago as our example
, she would not benefit from additional hormone therapy. Lago you are off the hook! 0 -
TwoHobbies - I think you are right that a high ESR1 score and intermediate or high RS would benefit the most from an extra 5 years of anti-estrogen therapy. But I also think the study is saying that for ESR1 scores less than 9.1, the RS score is not a reliable indicator of recurrence after 5 years. This is from the BCO article:
"...the Recurrence Score was linked to the risk of distant recurrence up to 5 years after diagnosis for cancers with high and low expression of ESR1. So the lower the Recurrence Score, the lower the risk of distant recurrence. More than 5 years after diagnosis, the Recurrence Score was linked to the risk of distant recurrence only for cancers that highly expressed ESR1." (bolding is mine)
I don't think this means that the higher the ESR1 score the more likely you are to have a late recurrence, just that if you have a high ESR1 (greater than 9.1) and intermediate or high RS, there is a clearer indication that you could benefit from extended anti-estrogen therapy. I don't have access to the full paper, but I'll see what else I can dig out.
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OK I think we agree now. Woo, that was a tough one to decipher.
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A few pages back there was mention of taking AI beyond 10 years - for higher risk patients. I came across this article.....
Ten years of hormone breast cancer drugs 'may benefit some'
http://www.ncbi.nlm.nih.gov/pubmedhealth/behindthe...
Sorry for a repeat - maybe my memory after reading all these articles........
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I am staying on the Ai (wont start for a couple of weeks as I am doing radtiation) for 10 years and would hesitate from ever stopping earlier. Went to several oncologists and all say the same thing-10 years
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I'm reading a different way. It sounds to me that if you have a low RS and high ESR1 your RS at 5 to 10 years out is still a really strong indicator that you will have a low probability of recurrence. If your RS was low but your ESR1 was low, then at 5-10 years out the RS would not be an adiquate predictor of recurrence.
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I wish I would have been allowed to have my tumor tested with the Oncotype in 2005. They had just started using the test and did not allow for 1 to 3 positive nodes. With one positive node, I had an automatic ticket to chemo, which is what they mainly used the test for then. Now, they seem to also be using the Oncotype test for how long to take hormone therapy. Although, I am completing 10 years of hormone therapy this month, I would have liked to have a better understanding of my risk. I suspect my test would have come back high with a 2 cm grade 1 tumor, 1 positive node, and high KI67 but you never know. I was always confused by final pathology after surgery indicating my tumor was grade one with low miotic count, and a previous biopsy indicating grade 2 with high KI67 (30%). I was 75 to 80% ER with strong staining from the biopsy. Biopsy indicated ductal and final pathology indicated infiltrating ductal with lobular features. They didn't retest my tumor on final pathology for ER/PR or KI67. Johns Hopkins lab conducted both tests, I think the oncotype test may have cleared up some of my confusion. Anyway, I am nervous about stopping Femara at 10 years. I wish I could stay on for 15 years.
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LizM - I was dx the following year 2006 as you and also denied Oncotype due to 1/18 positive node. I'll will finish up 10 years Femara next spring and am also nervous. I suppose if additional beneficial data comes out in the next few years - we can always go back on. However, it is frustrating not having this information regarding our recurrence risk.
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CP418 - Thanks for posting the above link on 10 years of hormone treatment, I had heard about the article, but not read it.
I also had a 1.8 cm Stage 11, Grade 1, with 1/30 nodes positive. Being in Australia in 2007 I couldn't get the Oncotype either, and did not have chemo, so I am on the 10 years of hormonal treatment also. I was hoping to push it out to 15 years of taking something, however I have now done 8 years of Femara (with quite a few breaks in the last almost 9 years) but my bone density test results last week indicate that the bones are now bad, and looks like I will have to switch to Tamoxifen.
I agree with you all that it is hard not having the Oncotype test and not knowing our recurrence risk. When I ask the oncologists what my recurrence risk is, they just shuffle around in their seats and pluck a figure out of the air, and I get varying answers from different oncologists, and it makes me nervous, as they say, just go and live your life and don't worry about it, make the most of the time you have now !!!!!
Keep the posts coming ladies, so good to share with others experiencing the same issues and who understand the dilemma we have.
Ched
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I love this thread. I was diagnosed in 2007 and the Oncotype was new. I had isolated tumor cells in one node so was lucky to have the Oncotype done. I am now finishing 9 years and hope to finish 10 years with Arimidex. I too am afraid to stop.
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Now that I'm getting close to 10 years on an AI, I'm chickening out. I finish my pills the end of the month and my F/U appt with my MO isn't until September so I called the clinic and asked for a refill to last though my September appt. I should have known that wouldn't fly. My MO sent me a message reminding me my 10 years was up, nicely recommending I stop Femara until we discuss at next appt. I replied back and asked about the latest study (using the 15 year number from the BBC article) showing 5 yrs of Tamoxifen, and 10 yrs of Letrozole, for a total of 15. He replied back that there are no studies for 15 on an AI. However, he recommended I take a 30 day break, and we will discuss side effects and the possibility of staying on for 15 years when I see him in Sep. I love my MO. In the 11 years I have been seeing him, he has always supported my decisions, even though many were probably overkill in his opinion. I guess it helps that he is a well known BCMO at Hopkins, and is comfortable thinking/practicing outside of the box. He was also one of the names listed at the top in the NEJM article posted here regarding 10 years of Letrozole vs 5. I also suspect he knows that they just don't know how long we should take these drugs. I wouldn't be surprised if in the future, some early stage women diagnosed with hormone positive BC take drugs for the rest of their lives since we have a life-time risk.
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LizM - I have the same concern. I suppose there is that option to switch to Tamoxifen but I got an ooph specifically to get OFF Tamox. I had a hard time on it and have concerns about uterine fibroids found during my ooph procedure. I had only been on Tamox about 4 months and have family hx of this problem. I don't care for the every 6 month internal monitoring while taking Tamox. I know patients do very well but so many end up with hysterectomies too. Not happy with any of the choices.....
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Wow CP, I did the same thing - had an ooph to get off Tamoxifen. Took Tamoxifen for 3 months. I had the ooph because studies showed AI's to have better results but I also had uterine fibroids. I have not heard it suggested to take 10 years of Femara and 5 years of Tamoxifen. I am hoping to take Femara for 15 years. We'll see in Sep if I'm allowed to. I'm getting a DEXA scan before my appt so that may play into the decision but if I am still in the osteopenia range, I think continuing on Femara with prolia for 5 more years sounds reasonable.
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Yes - I'm all for continuing my Prolia injections too. I recall in the past, my oncologist had mentioned a switch to Tamoxifen, if the Femara side effects and bone issues got worse. However, I think it was to get me to the 10 year target. He is my 2nd oncologist, so I had to tell him about my prior Tamoxifen experience. Keep us posted about your discussion with your Onc. IMO even if we have a gap in AI treatment and after a year or so the 15 year target is approved - we should be allowed to go back on it. I seem to recall a discussion for women who started Tamoxifen and stopped who did not finish 5 years. They were encouraged to try an AI even if there was a time gap they would still benefit.
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LizM one month off after 10 years I doubt will make a difference. This is a powerful drug. You don't want to have other serious issues staying on it for too long. I had to stop my AI due to SE after the 5 years this May. My MO said not to Tamoxifen for me.
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http://www.practiceupdate.com/c/40801/2/1/?elsca1=...
5-Year Extended Adjuvant Aromatase Inhibition
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What IS ESRI? I have never heard of it!! QuinnCat, you and I do sound like we have similar rap sheets. Doxie and Iago, nice to see you.
Thank goodness my body seems to have adjusted to Aromasin. After trying all 3 AIs the first 2 yrs, then a year of Tamoxifen because I couldn't stand the SEs, had the same SEs on that,back to Aromasin. I decided my body really wanted estrogen so all suppressants made me suffer. But now, except for issues with my hand joints, I don't have that awful barely get out of bed, feel like I am 110 years old part.
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Lisa - can you tell me how long you were on each, and your Aromisin story? I started and stopped Femara and Arimidex (nine months total). How long until joint stuff subsided on Aromisin?
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Exemestane/Aromasin was much much better for my physically
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This is an alternative technique. Held a bottle in my hand with elbow bent at side and tested bicep strength
The bottle thats strongest is suppossed to be the easiest in your body. I have tried all 3 AIs. Test was spot on for me. The Aromasin had the worst SEs and weakest anastrozole was middle, lexapro strongest and had least SEs
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Farmer Lucy- let's see,about 6 mos on Arimdex, then 3 on Aromasin, then 1 on Femara, then a bonescan to see if pain was caused by metastases (it wasn't) and then about a year on Tamoxifen, and then back on Aromasin. Did a 2 week "break" while on Aromasin the first time but didn't feel any different. Maybe it would have taken longer. My bone density test was good, showed no change after the total 2 yrs on this stuff. EVen writing this makes me so grateful that it got better over time, at least as far as I feel. Inside who knows what is happening!!
What about you?
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Lisa - Ten days on Tamoxifen, one year break,
, two more years on Tamoxifen, seven months on Femara, three months on Tamoxifen,three months on Arimidex, back to Tamoxifen since May. The problem with starting and stopping T, is that I'm back to ground zero with the hot flashes. I try to say something good about them when I feel themcoming on, like "oh good, a hot flash" but so far I can't come up with anything better than "My pores needed cleaning anyway, just think how great my skin will be from all this sweat." Just kidding! Thanks for your reply! 0 -
Farmer Lucy, our stories are similar in many ways. After my 2 cousins and sister tested positive for BRCA1 (two of them had had cancer) I was tested too. Found to be positive, I had ovaries out and first "surveillance MRI" 2 mos later. They found a .8 cm tumor. I said- Hey this is screening! Aren't I supposed to have a few of these before anything is wrong????? Anyway, I had oncotype 31 or so. SO chemo it was. And after all that I added Lexapro which has been great. On it 3 yrs now. Not only did it help me stay more balanced, it helped all my sleep problems go away!! I know it says it may cause insomnia but in y case it fixed whatever my sleep problems were.
Just curious- why did you go back on the Tamoxifen? Are you younger than me (61)? I had already been through horrid menopause. The ovary removal and the Tamoxifen gave me some hot flashes etc but not like my original menopause.
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OMG Lisa - We had our surgeries on the exact same day. Were we Feb 2012 Surgery Sisters (a thread) and I forgot? Yes our stories are similar. My pre-surgery MRI saw something in the exact place and of the same size as the surprise IDC, but it was passed or missed in the excisional biopsy. I'm on Effexor, 75 mg. I guess the hot flashes are exacerbated by the ooph. I went back on Tamoxifen after my year break because I had recovered from my PTSD, and the thought on not doing all I could to prevent recurrence was worse than taking the stupid pill. I'm 56 now.0
