How Many are doing 10 years on Aromatase Inhibitors
Comments
-
To all that are experiencing dizziness, I met with an ENT yesterday who fixed my dizziness. it was due to BPPV (benign paroxysmal positional vertigo). This happens a lot as we age. I had thought this was due to Arimidex for years. For those who are experiencing dizziness, you may wish to see your ENT.
0 -
I saw my MO last Dec, not scheduled to see him again until June. At that time we discussed the BCI (Breast Cancer Index) test that predicts future recurrence risk and effectiveness of remaining on anti-hormonal drugs beyond the five year mark. I was surprised to read on their website that less than 5% of patients will derive benefit of extended therapy. I thought this was a blood test that would be done in June at my 5 year point, and there was some confusion on my part because I had blood drawn after the Dec appt for a parathyroid test due to high calcium on my regular 6-month labs. I then received something in the mail from Biotheranostics about my BCI test that had been performed! I thought they had submitted my parathyroid blood sample for the BCI by mistake. What had happened was that the blood draw was indeed for the parathyroid test and my MO had ordered the BCI and it was performed on my original tumor sample. I assume he did this, without specifically telling me he was, so that the result would be ready at my appt in June. Since my insurance requires pre-auth for everything, and is picky about this type of testing, I was a bit panicked that I would be stuck with a big bill. I called Biotheranostics and was told that they would fight the insurance battle, and if they denied after all appeals I would not be billed and the test result would not be held. My assumption is that they want to build their database and are willing to absorb some cost to make this testing more attractive to oncologists/patients. I checked my online chart and the result indicated that I have a high risk of recurrence and no benefit from continued anti-hormonal therapy. I don't know if being node positive (the test was designed for node negatives, but is now used as Oncotype Dx is for those with few pos nodes) and/or Her2+ skews this in any way, but it raises the question that since the test is done on my original tumor sample did I ever derive benefit from anti-hormonals? Might this explain why some people recur inside the five year window even when on them? This will be a very interesting discussion with my MO in terms of what I can do to protect myself going forward if anti-hormonals are now off the table.
0 -
SpecialK I have an appointment with my MO next month. I will ask about the BCI test but I don't know if they have any of my tumor to test. It's been over 5 years. I am node negative but who knows if it's accurate on tumors over 5cm
0 -
lago - I was surprised that the test used the original tumor sample, but I believe most path labs hold the specimen for 10 years. I will be very interested in what my MO says about whether I had any protection from anti-hormonals, and what makes me high risk in the future that they see in the assay, and whether tumor size or nodal status (neither of which would be revealed by the specimen) factor in. I am thinking of moving up my appointment to May because I am scheduled for TE removal and bi-lat exchange with right nip removal (I can't even believe I just typed that...) on May 17 with port removal and I want to make sure he doesn't want me to keep the port in light of the BCI result.
0 -
I can't believe you just typed that either SK.
Thanks all for sharing about the BCI test. This is going to be interesting to watch unfold.
0 -
Special my MO and her NP both told me that positive nodes make you high risk but in my case, even though I don't have node involvement my large tumor over 5cm also makes me high risk.
0 -
farmerlucy - Lol! I am realllly hoping this is the last surgery - at least for the foreseeable future! I'm over it! I will report back on what my MO says about this - and whether he is amenable to any other modality of risk reduction, such as Metformin or any other Rx.
lago - I am in the same boat as you with the assorted diagnostic risk factors - but I am super curious what makes me high risk in the assay, other than Her2+ and a high ER+ percentage. I had BRCA testing and Mammaprint, but I am wondering what BCI sees that makes my long range recurrence a greater possibility.
0 -
I'm wondering is it because we are Luminal B?
0 -
Special K, I'm confused, if your result showed high recurrence risk, why wouldn't you derive any benefit from continued AI therapy? My BCI score was intermediate so extended therapy is recommended (they consider anything over a low score to be considered high risk).
0 -
jacksnana - I assume whatever showed up in my assay indicates that while I have a high recurrence risk, anti-hormonals will not work or have little effect. This would be consistent with those who recur during the first five years, with ER+ driven BC, and are on anti-hormonals. My understanding of this test is that the assay reveals both recurrence risk, and drug effectiveness - I appear to be a patient who has the unfortunate combo of high risk and unresponsiveness. I have not yet discussed any of this yet with my MO.
0 -
SpecialK,
I wonder if HER2+ has something to do with it. Also what was your ER+ and PR+ percents? It might be interesting to informally start collecting data on this.
I'll ask my MO about the test next summer.
0 -
Special I wasn't high ER/PR (30%, 5%) but when I mentioned that to my MO she said it didn't work that way.
0 -
doxie - I wondered about the Her2+ piece too and plan to ask my MO, but from what I have looked at online what the test looks at is a specific ratio and I don't know if Her2+ would have any effect on that. I was highly ER+ at 96%, but far less PR+, I had differing PR results on path and Mammaprint, but was still PR+ on both.
0 -
Special I too wonder about the HER2+ factor. Just being HER2+ puts us at a higher risk for recurrence. And it appears we are on the road to 5 more years. linky
"Predicting Benefit from Extended Endocrine Therapy in HER2+/HR+ Patients
A study done in conjunction with the University of Wisconsin School of Medicine investigated BCI results in patients with HER2+ versus HER2- early stage breast cancer. BCI classified a higher proportion of HER2+ patients as having high risk for late recurrence and a high likelihood of benefit from extended endocrine therapy compared with HER2- patients. This indicates that a higher proportion of HER2+ patients could be offered extended endocrine treatment. The study (abstract No. 595) is being presented as a poster May 30."
0 -
Great video link debiann! This type of resource sharing is a huge reason I love BCO. Thanks so much!
0 -
lago - unfortunately for me, I got the higher risk of recurrence score combined with the low predictive score for continued benefit from endocrine therapy, so instead of a high/high score, I got a high/low.
The linked article generally indicated that more patients can discontinue endocrine therapy at the 5 year point safely - so rather than the trend of going from 5 to 10 for all, I believe they are saying fewer actually need to do this than previously thought. The purpose of this test is to weed out those who will benefit so that if they won't they are not subjected to SEs and possible health problems from continuing therapy that is providing no benefit. Specifically looking at Her2+ patients they had more high/high results than those who were Her2-, but I am not one of them.
0 -
Special, Why do you think the Her2 part causes a higher risk of recurrence later? Looking at stats for all types of BC, ER-/Her2+ has the highest risk in the first five years and then drops down as close to zero as you can get (along with triple negative). So why would adding the ER+ part cause it to be higher? I know ER+ can have recurrences up to 20 years later but this specifically talks about the Her2 risk. I guess it doesn't make sense to me.
0 -
momma - no clue! I have seen my test results but have not yet had an appt with my MO. I have lots of questions! My understanding was the same as yours regarding the recurrence rate for Her2+ risk dropping after five years so I am not sure why those with Her2+ had high late recurrence scores
0 -
CP418 posted this article on the research thread. New staging system that incorporates Her2 status.
https://www.genomeweb.com/cancer/md-anderson-resea...
0 -
My oncologist just ordered the BCI for me to see if extending endocrine therapy another 5 years would be of benefit to me. It will be interesting to see how the results compare to my Oncotype results.
0 -
Alirena Just curious what was your diagnosis (Stage & Biology)?
0 -
Lago,
My cancer was ILC, 5 cm, Stage IIB, Grade 1, ER+, PR+, HER2 neg, 2 nodes negative.
0 -
This year I will end my 9th year on Arimidex and that will be it for me. The SEs for me have been manageable. The BCI test gave me benefits of staying on the AIs. I hope that others will post after having the BCI test. There are just too many women who have mets years after their dx.
0 -
Why do they wait for the 5 year mark of HT to see if the continued use of HT will be of benefit? If they are using the same tumor sample, couldn't the determination for 10 yrs vs 5 yrs be established at the start? Am I missing something?
1 -
Chef the test costs money. I'm sure insurance wants to be sure that you can make it through 5 years first. I mean if you can't do the 5 years then it's a waste to do the test.
My appointment was pushed up to early May. Will be inquiring about the test then but I know my MO wants me to do 5 more
0 -
I had the same question about BCI being done earlier, since my result has shown low benefit from continuing despite high risk of recurrence. I am just a couple of months away from completing five years and it has not been easy - if I was receiving low benefit all this time I am somewhat annoyed - but low benefit is not the same as no benefit. I also wonder if because five years has been established by trials MOs would be reluctant to abandon prescribing endocrine therapy altogether for someone who shows low benefit, and I would assume the data to take AI drugs for five years likely currently outweighs data from this test. The test itself says it is for determining benefit for continuing past five years, it is not calculating the benefit of taking the drugs from the get go. I believe part of the reason for this test is to help establish the tipping point of benefit versus harm for this class of drugs, so we are not blindly taking them past five years if they may doing more harm than good.
0 -
starwoman - did your MO explain how the theory for this trial pertains to continuing beyond the first five years? I just looked at the trial site and it appears to be looking at whether five years full time versus five years of taking letrozole intermittently provides more benefit, but says nothing about continuing beyond five years.
0 -
She didn't go into any detail, SpecialK, and I was a bit taken aback and didn't ask questions. But it seems the participants in the SOLE trial must already have completed 5 years of hormone therapy and the trial is looking at the impact of a further 5 years of either continuous / intermittent letrozole.
0
