How Many are doing 10 years on Aromatase Inhibitors
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doxie---I can't remember which thread I posted this so I'll repeat myself! At my 4 year checkup in Sept my MO said he was going to do the BCI test next year to decide if I am going to continue with Tamoxifen, swap to an AI or go off either altogether. He said he does 30 or so a week and find them very reliable and useful. Then while home for Christmas, I spoke with a family friend who's a top MO in my hometown and he couldn't say enough about how great the test is. He said he does about 100 a week and thinks it is one of the greatest breakthroughs in BC treatment in years. He said the accuracy is within .0001 percent. He said if I was his patient he wouldn't even wait till the 5 year mark but go ahead and do the test. I'm more comfortable waiting because I want to get the full 5 year benefit of Tamoxifen. I'm not sure I'll be comfortable quitting these meds if the test says to! Anyway, just thought I'd let you know about all the good things I'm hearing about the test. Please let me know if you get it and what you think of the results.
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Oh, yes. I remember this post. I hope my MO and insurance company are equally enthusiastic.
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doxie - I had the BCI test done at 4 1/2 years, to determine whether I should continue Femara (I have been on both Femara and Arimidex, but more time on Femara) or not. My MO wanted the results available as I approached the 5 year point. Unfortunately, I ended up with a high/low result - high risk of recurrence and low benefit from anti-hormonals, approximately 10% of tests come back with this result. My MO felt that low benefit does not necessarily mean zero benefit, so he suggested that I stay on Femara if I can handle the SEs. I started Prolia injections 6 months after starting anti-hormonals, and my MO also states that I will stay on Prolia as long as I take an anti-hormonal. I was diagnosed with node positive, highly ER+ (and Her2+ - likely one of the reasons for the high risk test result) breast cancer 9 years post total abdominal hyst/ooph - so I was firmly post menopausal. Also, Biotheranostics does not bill the patient if their insurance does not cover the BCI test. They have their own insurance department that handles all appeals, and if your insurance does cover, but not fully, they have patient assistance programs to help with any residual cost. My insurance did not cover the BCI test at all, and the only billing I received and was responsible for was the preparation and shipping of my original tumor sample in the pathology department to go for the BCI testing process - I think it was $95.00.
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So after the visit with my MO, I've decided to not continue AIs past 5 years and not send tissue in for BCI evaluation. I'm basing this on the assumption my tissue would have been high on both scores, but the reduction in actual risk would have been only 3% (4% from the earlier post was sloppy rounding). On AIs for five more years, my risk would be .9% per year over the next 5 years of any type of recurrence or new cancer. My current risk is 1.2% per year or a 98.8% chance I will not have a BC recurrence that year or with AIs a 99.1% chance.
My MO was counseling against both AIs and felt the BCI was pointless if I was hesitating on AI continuation and factoring the worst case results. He leaned towards better results and felt there was no need to send in the tissue. He was on the fence with chemo until my Oncotype score came in, too. Being node negative and Stage I carries a lot of weight for him. He also sees AIs as drugs with serious SEs that should be used only if necessary.
Still, I can chew on this for a while, as I've got another 2.5 months to go. And he renewed my prescription and would support me if I wanted to continue. So we left it that I would stop in April and evaluate how I felt when off AIs for a month or so. I can restart if research shows more benefit or if my gut tells me to continue or if my breasts start producing funky tissue.
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Thanks Doxie! Great info. Your onc sounds amazing.
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doxie...sounds good to me. I'm hoping that will be the case for me as well in about 3 years!
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Doxie - Do you happen to know what program your onc used to calculate those outcomes? Cancermath is up and running but I didn't think Adjuvant Online! was working. I go in Feb and I want to be armed with as much info as possible. BCO keeps me way more updated than my onc has time to be. My five year cancerversary is Feb 21! Congratulations on yours!
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I did the calculations based on reading recent articles and he agreed, or he didn't disagree. I'm not sure another MO would. But since I was arriving at the same conclusion as his there was no challenge.
I took my recurrence risk over a ten year period. You get this with your Oncotype score. If you had chemo (I did.) then this is reduced further. Mine comes to 12% over a 10 year period if I complete 5 years on AIs. This divided by 10 gives me a yearly risk of 1.2%. With a possible 28% reduction with another five years of AIs my risk is .9% each year over the last five of the original ten years. (I took 1.2 x 75% rounding for a 25% reduction.)
I'm making an assumption that my risk stays the same from year to year, which Luminal B more or less seems to. Don't know about Luminal A. If risk is weighted heavier in the first five years, then there is even less actual benefit to continuing AIs.
I'm not a doctor. This is just the way I am trying to understand whether I should continue or not.
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Thanks Doxie
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I got the 28% from this bc.org summary and cited research paper. http://www.breastcancer.org/research-news/ai-use-m...
I also looked closely at this research paper. http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=13943&path%5B%5D=44448 It teases out how node status impacts prognosis in addition to different BC types.
If I had nodal involvement, I would very, very likely continue AIs for another 5 years, but I was clearly node negative with 7 nodes tested.
I'm editing to add that within the last 1-3 years I've had x-rays to check back and hip SEs along with a CT for kidney pain. All came out showing no BC spread. I know that is not definitive, but that has helped make this decision.
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doxie - might just be me, but when I click on your second link I am not getting the research paper
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My breast surgeon just had me take a test to see if I qualify to take Femara for 10 years. Has anyone else taken this test? What is it called? My test came back with 11%. He said the test suggests that I get no benefit from taking another 5 years of Femara. It will not help me. Has anyone been tested and did they get a score. I believe it is not the Oncotype. I already had this test. It is a different test.
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Rose12 I think the test you may be referring to is the Breast Cancer Index.
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SpecialK,
Does this work? http://www.impactjournals.com/oncotarget/index.php...
If not google the title below and it will be first up. It's a December 2016 article. I've tried to paste in the graphs, but had no luck.
The prognostic value of node status in different breast cancer subtypes
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SpecialK,
If doxie's link doesn't work, maybe one of these will:
The prognostic value of node status in different breast cancer subtypes
Here's the exact URL
Gentle hugs to all
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Thanks guys! Got it by googling the title - not sure why I couldn't by clicking the links.
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I had the BCI done at 5 years on Arimidex and I was given the results of 5.3% decrease in risk by continuing the AI for 10 years. I continued for 9 years. 5.3% decrease was worthwhile for me. Many women do chemo with only a 1-3% decrease in risk of mets. I think we all want to say "I did everything that I could". I do think that the BCI is worthwhile.
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http://search.proquest.com/openview/25fddea348b532...
This link may work...
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Those links won't work for me but if you type in that exact title of the first link into Google the article will pop up. It actually pops up a few time but the second link gives you the actual article.
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Sorry about the bad links. As long as you can get the paper by google, good enough. This is the best article I've seen in teasing out risk by nodal status and BC type. I wish they had teased out Luminal B HER2+ from HER -. This would have helped me more. Thank you cp418 for the original post.
I agree, don't forego the BCI if you need it to make a decision on whether or not to continue. For me the decision is based on the minimal benefit I would get even if I was high risk and high benefit. I making this decision assuming I am. The good thing about AIs is that you can reverse the decision either way, stop or start depending on research results. I will keep reading these research articles and may even change my mind before April.
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On the BCI test, their website keeps referencing HER2-. I emailed them but haven't heard back. Any information on its effectiveness for HER2+? Special K I know you had it. Did they say anything to you?
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I just spoke with the Biotheragenics people. she said it was for her2 negative folks. She is going back to the medical affairs folks to check on triple positive just to make sure, so I should have a more definitive answer today or tomorrow.
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today I received clarification from the biotheranotics folks. Here is her response.
Patients who are both Her2 positive and negative will still receive clinically applicable Breast Cancer Index results.
So I am on a lobbying mission
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I am only on Year 3 and four months of aromasin and woke up two days ago where I couldn't walk .
My left hip and joint is so painful:
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anyone on this thread have Lupron shots andthen an AI? I had my first Lupron on 11/11/16, also the first day of my LMP. My MO wants to start the AI in a few weeks.
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fluff - the only proviso with the BCI test and Her2+ folks is that they show a higher propensity to result out as high risk of recurrence, not a big surprise. I think it is impossible to suss out what that high risk of recurrence is driven by - the Her2+, or something else. What is worth discussing in addition to the Her2 piece is what the other part of the result shows - potential benefit from continuing anti-hormonal drugs. I unfortunately fell into the 10% of people who show high risk of recurrence and low benefit from anti-hormonal drugs, although low benefit does not equal zero benefit, so my MO encouraged me to continue taking them. I am in year 6 now.
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special K, I am going to start again. Since my MRI results , The small bit of confidence I had started to have flew out the window lol. So back I go
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fluff - I feel ya - I had a weird PET result in May, a week before surgery (yet again...), that I requested based on the BCI result indicating low drug benefit. My theory was that since the original tumor was tested and shows low drug benefit that means I spent 5 years with potentially negligible protection. Sent PS and MO into a tizzy, they called in the BS to review and he felt it was not more cancer, but rather surgical changes and inflammation. Thank goodness he was right, but it was a nervous week waiting for those biopsies - both sides of my chest lit up on the scan big time, with a 3cm nodule at the site of my tumor. Eeesh!
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for any Canadians on this thread...BCI will not be available here until Spring. The patient advocate said she would update
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special k-EESh is right. They think the scattered foci are the result of the new t3 xray machine they have that picks up a lot more little things. She suggested that I have another mri 6-12 months. Looks like insurance won't cover more than one in a year, unless I come up with a symptom. So, I either wait a year or spend the next six months thinking up the symptom that will change their minds.
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