Changes in Lupron Medicare guidelines

As part of a total SNAFU at my urologist today I was told that I can not get my lupron shot as part of the office visit; now I must come back for a Lupron "clinic". Nurse and receptionist say this is a Medicare requirement. Has anyone heard of this? I've been "off" for 2+ years so I'm not in a position to argue...yet! Apparently it has something to do with the higher cost of lupron vs zoladex...as determined by a bunch of lawyers for Medicare back in 2001--really!

while the dr appt was cancelled for an emergency, he had looked at my last PSA and said, normal! He doesn't have a clue and clearly has done no homework.

41 Replies

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  • Not sure what tou mean that the doctor said "normal."

    Joel

  • Joel: I'll tell you what it means. It means the idiot had not looked at my records, had no idea where my psa was coming from NOR THAT I HAVE BEEN ON AVODART FOR ALL THESE YEARS AND MY PSA IS ABOUT HALVED.

  • Herb: Do you have Medicare Advantage? My husband got his shot Aug. 2, as usual. We have regular Medicare Part A and B plus Medigap Plan F. We also carry a Part D policy.

  • Blue, thanks for your reply. No I have A/B + G. Suggest you check your cost on Medigap G vs. F. My read says you're paying more than the deductible costs.

    But, again, does hubby get his shot during his regular visit or does he first go in for exam and blood test and then come back in a few days for Lupron?

    Herb

  • My husband sees the urologist twice a year, gets his blood work a week before the visit, and gets his shot at the end of the visit. It's been this way since 2005 when he first started Lupron and it's continual. We pay $276 a month for both of us combined for Plan F.

  • I'm always ringing up and being told my PSA is 'normal', either by a receptionist who doesn't know what she's talking about or by a GP who hasn't read my notes and doesn't really understand prostate cancer anyway. I really fight to control my temper sometimes.

  • rhbishop2: thanks for reply. You and I need to go drinking! HEAVILY!

    I certainly can excuse the receptionist, but not the doc or even the nurse. It took me years to "train" my urologist, then he goes and bails out and now, after 15 yrs I've gotta teach a new one.

    Herb

  • I just had my Lupron shot on 8-16 and wasn't made aware of any changes in medicare rules.

  • "Dave: I suspect the issue is "how does the doc know when it's time for Lupron?" He must have a recent psa test. So he makes you come in for exam/blood and then gets you back in for lupron. I have always gotten my psa beforehand so that he can give me the shot on that visit. PLUS, THIS ALLOWS ME TO START CASODEX A WEEK BEFORE TO AVOID ANY TESTOSTERONE FLARE THAT MIGHT OCCUR. How has your doc responded to that issue--or has he (and you) ignored it?

    Herb

  • The Lupron depot is a time release with a specified active life span. I go in every 6 months to get it and yes, they do a PSA test every time but the Testosterone level is what demonstrates LHRH effectiveness, not the PSA. Even after my PCa progressed to castrate resistance we still do the Lupron to reduce the T level as it's the only means available (in the standard of care) to throttle back progression. My PSADT is 3 months but if we let the T levels rise to natural levels that doubling time would shrink to an even more frightening pace.

  • Sounds weird--get a Urologist and a Medical Oncologist. We have no cure for this disease--and management of the disease needs experts. AS our administrator said--what is your exact today PSA, and what was it the last time it was measured. Do you know your Gleason, and staging? Knowledge is required for this disease. Many times other drugs are used in combo with Lupron---please get up to speed.

    Nalakrats

  • nalakrats: Yes, weird...after 15 years of the same protocol (Lupron+casodex+avodart), my new urologist wants to reinvent the wheel...or isn't aware there is a wheel! And the receptionist and nurse parrot along and say "it's Medicare's fault." I do have an oncologist, but I only see him 2x/yr...and he'll be retiring soon I expect...to avoid the turmoil hitting his large group as they move into a new organization, too. GRRR!

    Herb

  • No changes. I have been on it for 7+ years. I am in Kaiser but I have always noted that they do two appointments on paper, one for the doctor and a separate one for the nurse. I only have one co-pay for the doctor. I notice that Kaiser bills Medicare for each procedure but it does not impact me. Nurses who call results carefully give me the numbers of my PSA. I also get them electronically and have full access to my records.

  • Den Doc: thanks for reply. So far you're the only one who has noted the need for TWO appts. Why? I guess if the doc/nurse draw the blood on day 1 then you do have to wait for results. But I get my blood work in advance so that the doc AND I can decide the day of the appt whether it's time for Lupron. BUT THERE'S ALSO A SECOND REASON THAT'S BEING IGNORED: LUPRON (AND i GUESS ZOLADEX) CAN CAUSE A TESTOSTERONE FLARE DURING THE FIRST FEW DAYS AFTER SHOT. I HAVE ALWAYS STARTED CASODEX ABOUT A WEEK BEFORE THE ANTICIPATED SHOT...AND THAT'S WHY I GET MY BLOOD WORK ABOUT A WEEK BEFORE DOC VISIT. HAVE YOU DISCUSSED THAT WITH YOUR DOCS?

    I appreciate you chiming in on this.

    herb

  • Herb, This has nothing to do with Doc vs Nurse. It is all about billing and what Medicare will pay for. I was a pediatrician and I rarely gave an injection. My nurses were much better than I was at it technically.

    Medicare billing is very convoluted but essentially a provider group gets paid a set amount for each procedure. They can bill more, but Medicare will only pay a fixed amount. There is an elaborate set of billing procedures that the practices must go through. Doctors have nothing to do with it. It is all about coding the billing properly. It is essential that every single procedure done is captured during every visit and correctly coded for the entity or provider to get his Medicare reimbursement.

    Offices now have more staff doing billing than caring for patients. Even though I was at Kaiser where it is a prepaid system and billing was not a big thing when I started, it has become everything and it is all about capturing the money. I am so glad to be retired! I did some work until about 2 years ago and the system issues around billing and coding became a real drag especially for people my age who did not grow up with a computer.

    On the other hand, I get great, coordinated medical care and the electronic medical record with total patient access is a big part of that.

    My daughter who is a young physician says "Dad, I never knew the system you worked in so I am happy to do whatever is asked". She still loves taking good care of patients and that is what counts in the end.

  • Den Doc, but that's the point--this doctor's group is "blaming" the need for two appts on Medicare. So far, on this and other lists, only one person has needed two appts, so I conclude it's not Medicare's fault, it's the fault of the group and how they choose to try to work AROUND

    Medicare to maximize their income. I have no complaint with that UNLESS it adversely affects the patient (or is illegal). Two trips, two mornings shot, AT LEAST-- and I'm not there yet--my 15 yr protocol is being thrown out the window!

    herb

  • Totally agree. Money is driving far too much in medical care and it speaks strongly for a single payer system but that is a political ticking time bomb so I avoid it. When I joined Kaiser 45 years ago I was called a Communist, Socialist and worse for working on a salary and not fee for service.

  • I had to twist my urologist's arm to get on casodex a couple of weeks before my eligard shot. Why do we know more than our doctors sometimes?

  • At Sloan Kettering my Lupron injection is always done by a nurse. I agree with another suggestion to find a Medical Oncologist.

  • Donder: thanks. Of course the doc would never get his hands dirty with a REAL needle! That's nurse work (and they're better at it!). I do have an oncologist but it's a question of timing right now.

    herb

  • Haven't heard of this. I know Medicare won't pay if shot is one day early.

  • george:

    Yes, I've already been that route with this urology group several years ago. At that time the big question was whether Medicare based their count on days, weeks, or just months. I think it was, with effort, agreed that the magic number was days. so the "3-mo" shot was actually 84 days, the 4-mo was 122 and so on.

    herb

  • How about considering the one time once a year Vantas implant--goes in under the arm--no flare ups of worth--puts out a known daily amount of Lupron--no need for shots. Done in Doctors office in 3 minutes. Get a new implant each year--use Casodex and Avodart for complete coverage---that is my experience--and Medicare pays.

    Nalakrats

  • Nalakrats,

    First, there ALWAYS is the risk of something going wrong and it's hard to stop a 1 yr implant. Second, while it probably would be ok for my 1st 12 month "on", after that I look for earliest "off" start date based on psa and graphical extrpolation. With the Vantas, you're stuck for the 12 months. But it should save visits to that pesky urologist's office---but it won't!

    herb

  • Totally agree with Herb. I actually like seeing my oncologist and personally talking with him instead of email. I get the Lupron every 4 months and see him at the same time. It helps that I know him. I gave up on urology. I do not need them and they are not very good at medical treatment. They are surgeons first and foremost.

  • No I haven't heard of that but I had an issue getting my first eligard shot a couple of days ago. About 4 hours before I was scheduled to receive the shot a gal at the urology office called and said that the approval request, 2 weeks old now, hadn't been cleared by the insurance company. I called my insurance customer service and they were not thrilled to hear that and jumped on it. Someone local needed a kick in the fanny to provide that approval. Not a fun feeling being at the mercy of the insurance company. With this next medicare signup cycle I will change my insurance.

  • I had a radiation oncologist and urologist when first diagnosed. Fired the urologist 3 months after my treatment. After relapse 11 years later I was fortunate to see a medical oncologist at Dana farber who specializes in prostate cancer. I also have a medical oncologist in Florida.Both communicate with each other and my care has been great the past 5 years. I see a urologist at the VA once a year but he does nothing regarding my care. I am lucky, but you have to search hard to find the best.

    Best of luck k

  • Joey,

    Tell me about it! I had seeds + XBRT back in 1998, but by different rad docs 30 miles apart--that did not work out well. The first was a terrible prima donna and actually was not there for my seed implants. My XBRT was done at a more local hospital by a real sweetheart of a doc. I've had a fine urologist since then, but he just upped and left the area, so the office "assigned me" to another urologist. We are not starting off on a good foot!

    herb

  • Diagnosed 42 months ago at age 75...stage 4, Gleason 8. My response to this original post is really to the ease of our treatment.

    6 days after diagnosis, my first visit for treatment was to a University Cancer Center, 4 hours away. (Teaching hospital)

    Appointment was set up to see surgeon, oncologist and Rad oncologist. Surgery ruled out after scans. Oncologist and Rad oncologist excused themselves and returned with plan.

    28 doses Rad starting about 2 months later, taken at home city. Day of scans, received "super" shot. Headed home. Then 4 hour drive back 30 days later to start Lupron.

    We chose quarterly, as we're constant researchers and wanted to visit ONC, (with whom we're very very comfortable.) more often.He gives us all the time we want and says it makes his job easier because we work hard to stay up to date with current advances.

    I have appointment next week which is typical. 8:45 blood work. 9:45 with ONC. He usually has results before we meet. Only once since Mar 2013, has he not had them during our visit with him.

    We waited about 10 minutes and nurse delivered the news.

    We take home hard copy of our results but don't have to as they are on Portal. Primary Care MD and original Urologist also receive them. ONC and we communicate via Portal.

    We also visit Oncological Nutritionist, who is part of treatment at local hospital for past cancer patients...wife for her breast cancer and me for radiation. after having semi-annual blood taken in home town.

    He guides us on inflammation/imbalances in blood and regulates supplements. We talk to him about diet/our nutrition. My wife is now breast cancer free 7 years. Our goal is to be strongest possible upon recurrence, if any (always optimistic) and to keep her cancer free and my PSA at it's current "non-detectable" from the 1900 to start. .31 month later, .02 next visit and non-detectable since.

    Medicare and supplemental so far have been a non-issue...payment seems to be fine. Each medical provider says "just keep doing what we are doing."

  • BVWO: Sounds good, sounds the way the system should work. Stay on that path. Good luck.

    herb

  • Hey--each to their own---Implant takes 3 minutes to put in--Take out 3 stitches yourself 3 days later. Want to take it out--it is out in 3 minutes. The great thing you get a daily dose each day that is the same--without the ups and downs of shots--Where when you get the shot you have a high surge--going down the roller coaster until you need the next one. I get a PSA every 30 days and see my Urologist every 30 days. WE have a great Med-oncologist who just is in standby mode as I am undetectable at present--we already have a plan for the next 2 years--if x happens we do y, if b happens we then do c. Planning is everything---and I do it every 30 days. Like I said each to their own--makes sense to me to have a daily known dose being the same every single day. Of course it is part of a cocktail of Casodex, and Avodart/Proscar--with Pectasol-C and D3, with K1-K2, Sodium Selenite, and Glutathione.

    Attack Attack Attack--don't let those micro metastases, that cannot be seen by current scans to wake up. And if they do--prevent them from angiogenesis. Do not allow them to stick together to start using their Galectin-3 protein to colonize.

    Nalakrats

  • Nalakrats: I agree about not letting the sobs get ahead of us and that's why I'm so po'd at the new urologist. He is completely unaware of my situation and I have no idea if or when he'll get me onto Lupron...then I go look for a new doc! Meanwhile I had started Casodex and plan on continuing on that alone. Bet he'll have a fit when he learns that! :-)

    herb

  • Study study study--in the end we want to make proper decisions--no Doctor tells me, 'now Nalakrats this is what we are going to do to you'. Last doctor that said that to me--we were in the ICU of a Hospital--I took the IV's out of my arm grabbed the Doctor by the throat lifted him off his feet and tried to throw him out a third story window until 5 guys tackled me and put me back in bed. Next hour another Doctor came in to say he was taking the first doctor's place and asked permission to sit at the side of my bed to discuss options. If I die of this friggin disease-it will not be a doctor's fault--it will be mine!

    Nalakrats

  • Nalakrats, my distrust goes back to my internist in 92-97. After an abnormal DRE during a screening (but with a 0.9 psa in '92) he repeatedly told me, after sigmoidoscopies, dREs and psa tests "everything NORMAL, nothing to be concerned about". This was my friend, my doctor of 30 yrs. Then he died and his replacement did one psa and DRE and sent me to a urologist. I was young, stupid and trusting in those days!

    herb

  • I am surprised that you are not given the actual numbers when you call the doc for your results. I have always been given the numbers.

    I agree we are too trusting and need to study hard to make an informed choice and, all too often, the docs get in our way of that.

    I got a PSA done a couple of week so go after 1 month and one week on hormones and it has gone down from 12.9 to 1.9 I really didn't expect it to go down that much so soon. I have made my appointment for my second injection on 29th September and totally forgot that the nurse said I should make an appointment for a PSA test to be done the week before. So will have to do that today. I have been interested to read that some of you get Casodex the week before your injections - no one had made me aware of this so I am going to have to check that out before I get back on the old "merry go round" with the nurse where I am sat there ready for my injection and she asks have you had your tablets and I say no didn't know/wasn't told I needed them. I do wish someone had given me a proper treatment plan so that at least I know what was supposed to be happening!

    I have an appointment next Wednesday to see if Cyber Knife is a goo option for me and see how much it is going to cost and if the NHS might pay for it. Really not looking forward to all the travelling that entails but it has to be done.

  • Desanthony:

    Re not getting psa numbers: that was then and I have learned! Unfortunately, the new urologist has not!

    I'm not up on Cyberknife but it does only require 1-5 treatments, not the 30 or so I had 18 yrs ago. Also it's higher dose; is that good or bad as far as efficiency and side effects? I don't know. Certainly worth discussing with your team. Good luck.

    herb s

  • Exactly. It is short and the side effects may well be worse and come on quickly. I was told I would start getting problems with IMRT at about the ten day to two week point - due to the position of the cancer. So if I get this then maybe it will be after 2 days? Who knows. Lots of questions to ask, lots of information to take in. At the same time it may be that these side effects will go quicker too. Who knows?

  • I'm also on Lupron having my last shot in July. As usual done in an office visit by my doc nurse. If you have PCa, I don't think there is such a thing as normal psa reading. So what was your doc saying?

  • yope: Thanks for adding to my ammo belt. I agree with you. That's the protocol we've used for 15 yrs. There might be a "normal" psa if you were newbie getting screened (4.0 cutoff), but replacement Doc, who I have yet to meet, just looked at Labcorp value, 3.0, and never bothered looking at my file-that's work-but it would have shown that I'm on Avodart (psa doubling), and I've been "off" Lupron for 2+ yrs and it's now time to go back on.

    We'll see what happens next week.

    herb

  • i am surprised and a little shocked by so many of the comments.

    1. People living so long! I assume most people's pc has not metastasized, and you have received curative intent treatment to the prostate (removal or radiation).

    2. Surprised at the mention of ongoing casodex=bicalutimide. I hear casodex is sole therapy in Europe, but thats not you are reporting. Many say ongoing lupron plus casodex. And some 5alpha-reductase. Gosh the 5alpha is scary to me. And reports of casodex to prevent flare during ongoing LHRH? What level of testosterone are you after? Zero? What are you getting?

    3. Shocked at doctors saying that 1 or 2 or 3 or 4 is a normal psa level for a person with no prostate or on ADT. Dangerous people.

  • martingugino: But that's the whole purpose of treatment: to extend life, ideally with minimal suffering. For the record, the fact that my psa DOES start going up (and with a short doubling time) DOES say there is metastasis SOMEWHERE!

    Yes, bicalutamide and 5ARI are not used by all. Does it matter? I think there now is some (weak) evidence that it does. Use of bicalutamide for flare is particularly important. When one starts a drug such as Lupron there is or can be a sudden increase in testosterone. That can translate to pain and/or growth of cancer cells. Neither is desirable. Same with 5ARI, Lupron/Casodex only shut down testosterone from testes, about 5% can be produced by adrenal glands; 5ARI helps to prevent that testosterone from being converted into dihydrotestosterone (DHT), a much more active "cancer generator". But if DHT is already low (<5...or <30), it may, in fact not have any value. But it does grow hair! :-)

    the European casodex treatment has, I believe, been at 150 mg/day. USA considers that dangerously high.

    Herb

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