How Many are doing 10 years on Aromatase Inhibitors
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SpecialK- You may indeed get billed that 5K so best to at least tell them you will pay a small amount monthly if they persist in billing otherwise it could go to collection agency and really hit your future credit. I urge all of you to make sure about billing ahead of time if you can. 5K for a test that would not change your treatment kinda crazy . I sure would appeal in writing to your insurance company as you were not told they were doing the test ahead of time. Big hugs.
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Hi Mommato3 - we have an identical diagnosis - both er/pr/her2 positive, grade 3 and stage 2A - The message I got from my MO was that the ER PR component is what she is concerned about in terms of late recurrence - maybe if there are ER PR cells that escaped these are the ones that could take a long time to "wake up"? What confuses me is that these cells are also grade 3 correct? so technically your MO is correct in saying that these recur usually in the first 3 years
I like your MO's answer better
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grammy - Biotheranostics has already told me they will not bill me personally. I believe that their philosophy is that they will help you cover the cost if you are uninsured, or underinsured - or have other costs, but if insurance continues to deny through their appeal process, that they handle - not the patient, they will not hold one personally responsible. My insurance did not cover the Mammaprint either - they regarded it as "experimental" in 2010, and my BS did not get a pre-auth referral (his office was at fault for that - 100% of my treatment required this) or he would have known this in advance. I again did not sign anything saying I would be responsible, so I refused to pay and Agendia wrote off the cost. The BCI testing was done without my knowledge, since they use the original tumor specimen from BMX I did not give blood or anything like that, and I did not sign any authorization to do the test, so I am not obligated to pay for it if they failed to determine whether my insurance would cover the test before performing it. As far as I am concerned that is their bad. Don't worry - I am not worried about this. As I said earlier, Biotheranostics is a provider for my insurance so I don't know if they are denying based on the test itself as something they don't cover, or at this point denying because the lab has not obtained the pre-auth referral yet - or has tried to do things in the wrong order. They can actually get a retroactive referral if they ask and the test is something that is covered. I don't know yet whether or not treatment choices will be changed or reinforced, as I still have not spoken to my MO about any of this - I am not due to see him until June.
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Rozem, I like my MOs answer too!! Unfortunately I'm too scared to stop at five years...at least right now. I've only been on an AI for 16 months so I have plenty of time to wait for more info.
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Mommato3 and rozem my oncologist talks about the ER/PR and with a big tumor chance of some cells escaping. She wants me to be on it for another 5 years because of this, even though no nodes. But I thought I read that Massachusetts General in Boston is conducting the study for 10 years on AIs. One of the things I remember in the abstract is it saying something about triple positives having a high recurrence rate. I wish I could find the link but it's been posted recently in this thread.
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So I was thinking I was waiting to hear if insurance would cover the BCI test and THEN decide...and I get a call from my MO that the results are already in! So there went my decision to NOT have it done!
MO tells me the test showed my recurrence risk as high (stomach drops) .. however, their cutoff for low risk is 5%.... so anything above is considered high. And I'm at 6%. So just like the oncotype test where I was 14...I'm sort of in the gray area. I hate that. I guess this is kind of why I didn't want to know. My MO told me when he found out the results he thought it was great news because he was actually convinced it would be higher based on my high Ki67.
So according to him... taking an AI would reduce my risk from 6 to 2%. Staying on Tamoxifen (which I've already stopped) would be less of a reduction...I think he said maybe 6 to 4%? It's all a freaking crap shoot anyway right? What if I'm that 1 to 4% that is going to recur no matter what the hell I did? Or I'm in the 90ish percentile that will never recur whether I continue on meds or not.
My MO says he is supportive of me if I want to stop and doesn't think that is necessarily a reckless decision. My husband says it's up to me but I can tell he wants me to continue. I'm torn. I for sure will not take AI's because I already have ostepenia and my mother has osteoporosis. And I do not want to go on bone strengtheners. The risk for all that is too high compared to the benefit in my case I feel. So do I go back on Tamoxifen for only a maybe 2% possible benefit? I'm tolerated it fine but I really just want to be done.
I'm exercising, eating healthy, had my friggin ovaries out...doesn't that help me too? Sigh.0 -
Hey, went to onc on Tuesday!! After taking Aromasin for almost 11 years , I am officially done! I will finish the current bottle! Yikes, a little scared to be off my drug that kept the cancer away!
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Hi, all!
First, let me say what a relief it is to see all the familiar faces here. (On the other hand, it's not such a good thing that many of us are still dealing with after-effects of our cancer diagnosis so many years down the line.)
I stopped by because I'm in the same boat as most of you. I'll be completing my 8th year of Arimidex/anastrozole later this spring (dx'd in 2008). At my 5-year mark, my med onc said she was on the fence about continuing the AI. There wasn't yet any evidence that extended therapy would help (except with tamoxifen), but if my SE's were tolerable and bones were still holding up, she could support continuing.
Last year (I think it was), she was less hesitant. Even though there still hadn't been reports from the studies on extended therapy, she said, because of my "high risk [of recurrence]", I should stay on anastrozole. My Oncotype DX score was 26, which meant a 17% chance of distant recurrence (mets) in 10 years. I did have 4 rounds of Taxotere/Cytoxan, but the concern now is that pesky risk of a late recurrence.
I did not have BCI testing done on my tumor. Mine was PR negative, which confers greater risk (and increases the Oncotype score), but I have no clue what the Ki-67 would be. That's what would be needed for the BCI calculation, I think. (?) I guess it's moot, anyway, since I've done 3 additional years and I don't like to go back and second-guess choices already made.
My aches and pains seem to be getting worse (not good news), and my bone density had slipped just below the osteoporosis threshold at my last DEXA scan (worse news). (It had been holding in the osteopenia range since my dx.) So, my appt. with my med onc next week should be interesting. She said last year that she hoped there would be results on extended therapy by this year's appt., but she also said the lack of a leaked result (early report) was a hint that maybe extended therapy wasn't helpful.
We'll see.
otter
[P.S.: I was wrong. The BCI is way more complicated than I realized. I was thinking of the Luminal A/Luminal B distinction. I've been in a state of denial about all that. I think I'll head back there now.
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My MO characterized my OncotypeDX score of 16 as “low risk," not “gray area." Thus far, at 3-1/2 months, my SEs on letrozole have been milder than most--probably because I've been prophylactically treating my osteoarthritis for several years even before bc. I have been keeping my insomnia at bay with a combination of Unisom, melatonin, and occasionally a half-tab of Norco 5/325 (of which all my doctors approve). I have gained 2 lbs., but I’ve been giving in to carb cravings and been less than vigilant after 3 years of low-carb.
According to a pre-treatment DexaScan I am considerably osteopenic in one hip and mildly so in the other and spine (and normal in my lower legs), but the only weight-bearing exercise I can do is non-ballistic (low-impact). All the bone-building good stuff (running, jogging, jumping rope, etc.) is off-limits to me because they'd cause my bilateral knee replacements to fail prematurely. Oral bisphosphonates are off the table because my GERD is severe enough to have produced laryngeal, esophageal and gastric erosions (and exacerbated my asthma) thanks to the high-dose OTC NSAIDs I'd taken instead of addictive Rx painkillers post-TKR surgery. Because of the PPIs I must take, I don't produce enough stomach acid to assimilate the cheaper calcium carbonate such as TUMS, Caltrate or Os-Cal. so I have to swallow calcium citrate “horse pills" (even the “petites" are tough to swallow) along with D3, K2, and Mg. I'd prefer Prolia to Zometa because a shot is less invasive than an IV (and I have terrible veins).
But my MO prefers Zometa (unlike other MOs she thinks it's superior in preventing mets--though she concedes that the results of trials supporting Prolia's advantage might change her mind once the data is released). She may also be concerned for my financial health, in that Prolia's “rack rate" is $5K/shot and I am now on Medicare. Medicare makes me ineligible to use manufacturer's discount coupons or co-pay cards (which had kept my Rx costs lower before I turned 65). And I can't get coverage for Prolia: Medicare Part B won't cover it because as an injectable (whether self-administered or in a medical office) it's a “drug" and therefore subject to Part D. But my Part D plan doesn’t have Prolia in its formulary and thus won't cover any of the cost, not even if I and my MO show that orals are not acceptable for me (there’s a lovely little hitch in Part D called “step therapy," in which you have to try cheaper inferior drugs first for up to 90 days. I already pay a much higher co-pay for generic letrozole because my Part D insists I try anastrozole first--I am lucky my MO went to bat for me so they'll cover letrozole at all. And step therapy is only for drugs in my Part D plan’s formulary!). But because Zometa is an IV infusion, it is an “in-facility treatment" covered by Part B. My only hope of getting Prolia covered is as Xgeva, a “specialty drug” for cancer at a 33% co-pay....but my MO would have to lie and certify she’s prescribing it to treat bone mets, not prevent recurrence or treat osteoporosis/osteopenia.
And it makes no sense to start bone drugs this Aug. (my MO's target date) before we see what letrozole has actually done to my bones. My DexaScan was done even before starting rads, much less AIs. My husband says if it comes down to it, we'll bite the bullet and budget $10K/yr for Prolia and whatever it takes for another “new baseline" DexaScan--just as we were able to pop for NovartisUK Femara ($588/90 days' at CanadaDrugs.com vs. $2700 at US retail) as a backup in case my pharmacist can no longer get the Roxane or Teva generic formulations, which have the lowest incidence of SEs of all the generics. But most people aren't so lucky--for us it'd only mean not buying new clothes, giving up a vacation, or flying nonrefundable coach instead of Economy Plus.
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Had a rather hilarious phone call with my insurance company this week as I once again looked at my portal and saw that they had denied the claim for Biotheranostics and the BCI test. When I spoke to the rep she indicated that the denial was not based on anything Biotheranostics did, or didn't do - but rather...wait for it.....because I am not currently being treated for breast cancer, and the records don't show that I have been diagnosed with it! Um..,wtf??? So, the many hundreds of thousands of dollars, the imaging, diagnosis, surgery, chemo, a lot more surgery, and the ONGOING endocrine therapy don't show up anywhere in what they were looking at? I actually started laughing, assured the rep I was indeed being currently treated, explained the BCI test and why it was performed, and that I am indeed continuing to receive treatment for breast cancer. I am once again doing someone else's job as I then went to my MO's office and got a copy of his notes from December where he indicated that I am taking Femara and that he was ordering the BCI to see if I should continue. I also called Biotheranostics - told them not to bill again for two weeks, to wait for me to try to get a backdated referral (which they should have done before they did any testing), and mail my MO's notes to the insurance review department. Biotheranostics billed my insurance without including any medical records to back up why the test was being done - and they have a dedicated insurance department - imagine that! Tell me what insurance company will pay $5400 to a lab that just sends a bill with no backup? Ridiculous. I am encouraged that the billing was not denied because they don't cover it though - just because I apparently don't really have breast cancer. Lol!
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I would forward everything in your portal--test results, after-visit summaries, etc.--to the insurance company--if they still conclude you’re not being treated for bc, then they are illiterate and should be publicly shamed.
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chisandy - I was looking at the insurance company portal, not my doc's. They already have everything from the last six years - that is what was so astounding! The way my insurance works is all pre-auth, no deductible, no co-insurance, only a small co-pay for doc visit or surgery. They require pretty rigorous documentation before granting permission to do anything - or before paying for anything, so they have all my info right there. What is so funny to me is the quantity of treatment I have had should make it abundantly clear that I had a diagnosis of cancer. I am sure that whoever initially looked at this claim misunderstood both the test, and why it was being done so far out from the original diagnosis, and knee-jerked it with a denial. Either that, or the cynic in me feels, that maybe they just deny stuff like this at first hoping the lab goes away and stops billing them. Or they know Biotheranostics will write off the bill if they deny all the way through the appeals process, as I was told. It is back in the review area now and they will receive the notes to show continued treatment and the order for the test. I am mailing this by snail mail so I can include additional info on the test and also include their own EOB's for letrozole, with an explanation that it is endocrine therapy for breast cancer. I'm sure the next phase of this will continue to be as amusing as this has been so far!
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I have heard more than one "born-again cynic” say that the mantra of the health insurance industry is “delay, deny and hope they die.” It’s a mindset not limited to the private sector. My former law partner used to specialize in Social Security Disability claims, and said that the first application is routinely denied, requiring another examination by another doctor accompanying the appeal being filed. The whole idea is to make the process so burdensome that the claimants give up and give in, thus saving the insurer (or gov’t) money. I wouldn’t be surprised if the person who denied coverage knew the details of your case history all along but was following company procedures to the letter.
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As someone who's worked for an insurance company and who has a family member who used to be the president of one, insurance companies routinely deny the first request for any money. As ChiSandy said they usually hope you give up (can't say they hope you die though!). This same family member told me when I was diagnosed that any bill I got for "big" money to ask that it be resubmitted or go to the person owed and offer cash for a large discount. My first "big" bill was for my biopsy and was $2800. I checked the line items billed and noted a couple of what looked to be repeat charges. I called the place and they said they'd look it over and rebill me. The next bill was $2200. I did the same thing. They rebilled me a third time and my bill was $1300. That's a huge drop from $2800! Sometimes it just pays to be the squeaky wheel! Don't ever let these insurance companies push you around. They work for you. Especially now that they can't drop you on a whim.
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I am not overly concerned about this as I won't be personally billed for this expensive test even if insurance does deny, but I don't want the lab to go unpaid if the test is actually a covered benefit. I put on my "polite but assertive" hat without hesitation, and have had almost no issues with getting treatment and getting it paid for, which when one considers just how much that entails is pretty amazing. I have almost zero complaints about my insurance company - the only other denial was for a non-FDA approved test early on, and I understood that. I didn't pay for that one either because I had signed nothing saying I would be responsible and my surgeon failed to get the approval in advance - so either his office ate the cost (he was involved in a study with the lab and submitted almost all biopsy samples to them) or the lab did, but not me. They have quickly paid every other bill (usually within two weeks because everything is already pre-authorized) including several PET scans and a lot of other imaging, 6 chemo infusions, 17 Herceptin infusions, and 16 surgeries, so I am giving them the benefit of the doubt on this, lol! I also have an extensive and long history of skin cancer - first one diagnosed at 35, and they continue fast and furious - have had more than 30 of them, and insurance always comes through. They have let me have open-ended PT for both lymphedema and for my hip injury, not limiting to a specified number of sessions per year - if I need it they pay for it. So, this was not worrisome for me, more surprising than anything!
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I had an appointment with my MO today to discuss the result of my BCI test, and to double check his instruction to remove my port on May 17 during exchange surgery, in light of my test result. He did advise to go ahead and remove the port, and we discussed several things in relation to staying on aromatase inhibitors beyond 5 years - which for me is this June. My test result was high risk of recurrence, low benefit from the AI drugs, but since low is not the same as no, he said that their practice protocol is if one is tolerating the drugs to stay on past 5 years even if the test indicates low benefit, so I will, but am switching to another maker as I have developed new triggers. I am switching from Teva letrozole to Roxane letrozole in hopes I can resolve a right ankle trigger and left thumb. Switching has worked for me in the past. He is also starting me on Metformin, at a low dose, which if I tolerate would escalate. I have a "pre-diabetic" blood sugar since chemo and steroids, but it may have also been caused or made worse by Lipitor which I took during chemo also. I no longer take it but my fasting glucose has remained firmly at 100, so I asked about Metformin. I had asked about it a couple of years ago, but my MO wanted me to ask my primary care. The PCP said no due to the GI side effects and lack of confirmed data for BC recurrence prevention, but I think enough oncologists are now using it so this time he said yes to it. I also think any risk mitigation seems like a good idea in light of the high recurrence score on the BCI. He also ordered a PET scan since I have now graduated to annual appointments, and not been scanned for several years.
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Sounds like you and your MO have a thoughtful individualized plan, Special K. I also came back with "high risk" results, but was surprised to find out they considered anything above 5% as "high".
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susansgarden - yes, it is a question of how high is high, right? My risk result was closer to the top end, but I am Her2+ and node positive so that was not a real surprise. It is common for patients with those particular parameters to have a higher result, and it would probably been a bit surprising if I had a low risk since I had also had Mammaprint done, which is the same type of genetic assay, and my result was high. What was interesting in my conversation with my MO was the lack of useful info from the Biotheranostics rep he regularly talks to about how much benefit someone in my situation would derive from the first five years of anti-hormonal therapy.There does not seem to be much verifiable info for the small percentage with my result of high risk/low benefit about the amount of protection offered by the first five years, and the decision to leave me on them is more a question of if I am willing and am tolerating them versus anything quantifiable for benefit derived beyond five years either. I am kind of like, and we did this expensive test why???
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I hear you. I suppose it's nice just to have all the information possible in order to make the best decisions? Shrug.
Though if the test would have come back for us as super low risk we would probably be singing its praises!
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I'm going to I got to MO for year post ch mo follow up. Am confused by all these tests. Expect that be on AI a long time due to ILC typically recurring later than IDC Any suggestions exactly what I should be asking her to check? MY PCP is already checking bone density and cholesterol, but I don't know how high risk I am except for the fact that I'm 100% estrogen positive so the letrozole was suggested as even more impt than the chemo
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chloesmom you are right ILC can be sneaky. I would ask if your MO wants you on it for 5 or 10 years. While sneaky you still had a smaller tumor (under 5cm) and no node involvement.
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chloesmom - other than bone density I don't think there is much to check for you at 18 months on AI drugs. In terms of high risk, I had that result from Mammaprint right after diagnosis, and was both Her2+ and node positive, which constitute high risk by default. Doing the BCI test didn't come up until the 5 year point. By the time you get to 5 years there will hopefully be more data regarding staying on endocrine therapy for longer periods
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thank you so much for input
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I am DONE! My MO feels given the issues I am having and there are still no definitive results that an additional 5 years is beneficial she feels I should stop. I think the fact that I came in with my foot in a boot due to a stress fraction in my foot really helped her decide. She said I shouldn't be getting a stress fraction in my foot when on Prolia. She now wants me to visit with the Rheumatologist again to address this. Can't get an appointment till mid August… and I am not a new patient! What!!! That's nuts. My Prolia is on hold till then but I'm due now.
So I did my 5 years
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Asked yesterday at the MO whosaid the study about 5 vs 10 years will be done in another year
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Hooray, Lago! Hope your stress fracture heals quickly! Will you wean your self off the Aromasin? That is what I am doing! You am taking it every three days now, until I finish the prescription!😃😃
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Thank you ladies for continuing this thread which I started back in 2013. Very interesting to hear what others are being told by their oncologists about the aromotase inhibitors and how long we should take them for.
Nothing has changed for me other than to be told a few weeks ago that they want me to do 10 years of treatment. I expect that this is because I did not do chemo and had a positive node. I am past the 8 year mark now on Femara and continue at this stage, but considering changing to tamoxifen at some point. Bone density has taken a big fall, however I will wait until I have my next bone density test in a couple of months to make the final decision on when I change to tamoxifen. Lots of pain and inflammation throughout my body and there is always some body part that I am experiencing terrible pain with.
Chloesmum - do you know the name of the study that is being done re 5 v 10 years.
Lago - Great to hear that you are finally free of this drug. I would be interested to hear from you as to how long it takes for the pain to lessen and that you start to feel like your old self again. I fear that will never happen for me. The last 8 years have been very long and difficult and I have had a new problem for the last 2 years which is driving me insane. Reflux - I have taken all sorts of things to help it but nothing helps, but the problem is so severe, that I have it with whatever I eat, or even when I don't eat. I believe this is an end product of taking Femara also, as I have never in my life suffered from reflux prior to taking this drug.
Thanks for sharing and take care of yourselves.
Ched
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I just stopped Arimidex after 9 years. It has now been 1 month. I am now having more hot flashes but the indigestion and constipation has lessened. I do feel more like my old self if that makes sense. My thinking is clearer. I hope that my cholesterol drops. I was beginning to have a decrease yearly in bone density and my cholesterol was approaching medication level.
Has anyone else quit recently after 8-9 years?
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No weening. Just stopping ESD
Chloesmom my MO said the study closed 5 years ago. They haven't reported anything yet probably because there has been no significant info to report.
aussieched I don't really have any bone pain only from the stress fracture. I have read it gets out of your system in about 4 days. BTW I had terrible reflux years ago. Suffered for 3 months till I switched MDs. The Protonix wasn't working. New MD put me on Carafate Suspension. Worked like a charm in a matter of days.
Aug242007 I just noticed my cholesterol was a little high for the 1st time in my life. Hoping getting off this drug helps. I have managed my constipation with diet and dried apricots but I hope getting off the drug helps even more.
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When i was at Hopkins my MO said someone is completing a new study on 5 v 10 Not sure who or when it will be published. She just said we'd know when i hit the 5 year mark .
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