Carcinoid and Results Based Medicine and Me

After over 4 years of battling my HMO and my oncologists to get the treatments that I knew were recommended by specialists in the field, my oncologist finally sat down and told me that she would likely have arguments over any orders of my new Carcinoid Specialist (her current objection is simply some new blood tests). She told me why… The HMO and she are committed to results based medicine. As a result, I am leaving her and the Kaiser Permanente HMO.

Caution, these thoughts are my understanding and opinions.  I am not a medical professional.

As a statement, “results based medicine” sounds good and if your disease is well known and thoroughly studied, it possibly is good. Results based medicine (also known as Evidence Based medicine) means basically the physicians will only use medicine and treatments from well designed and conducted research.  In addition, the results of that research should be made available to physicians through guidelines from professional sources, guidelines and checklists.  This is great. It tends to protect the patient and the doctor and make the doctor’s work more efficient.

Why then must I leave my insurance company? What does “results based” mean to me?

I have neuroendocrine cancer. This is a disease which is rare and poorly understood. There are very few medicines or treatments which qualify as “results based”.  In fact, my doctor has complained that there are no guidelines for neuroendocrine cancer (there are guidelines but they are not 100% results based).  The only treatments that qualify as “results based” are a couple of drugs that treat the symptoms and might inhibit tumor growth a bit and maybe a treatment called embolism which has been used for many liver cancers for years.

That means that my doctor and my HMO believe that only my symptoms should be treated by a limited number of drugs which are known to stop working after a few years and that the doctors will monitor the progress of my disease with a limited subset of the possible tools to check how sick I am. Actually it is not really very important to monitor the progress of the disease because they do not allow themselves enough options to change the strategy anyway. To me: this is something like ongoing hospice care, by which I mean they only attempt to keep me comfortable while the disease kills me.  It amounts to a refusal to treat me with the advancements currently being made and known by the specialists in the field. In fact, my doctor evidenced disdain for specialists.  Note that most neuroendocrine specialists treat more cases in a month than my oncologist or any nonspecialist oncologist will treat in their entire career. The specialists might know something that the others don’t.

Should I be satisfied to get sick and die because those doctors have committed to only certain standards of treatment?  I don’t think so.

I think that any patient with neuroendocrine cancer or any rare or unusual disease should find out if their docs follow only “results based” medicine or not.  I think that, ethically, doctors should be obligated to tell patients what that decision means for them instead of playing verbal games when the patient suggests a new treatment. If their doctor claims to strictly “result or evidence based medicine”, any neuroendocrine patient should get away from that doctor or insurance as far and as fast as they can.  That doctor will not treat the disease.  The patient will likely get sicker sooner and die earlier than need be.  We patients do not have the obligation to die for the doctor’s beliefs.

I have wasted 4 years battling doctors/insurance who only wanted to treat symptoms. when I asked for a standard tumor lab test called Ki-67 which measures tumor growth rate, they answered “Why? The treatment would not change no matter the rate.” Anybody who has dealt with cancer knows that how fast it is growing is very important.  By being obnoxious I managed to get chemoembolism but that only worked for a few months.  After getting progressively sicker for a year and being told that surgery as a treatment was not proven in a double-blind study and that it might kill me (true but not likely), I went to an outside doctor who wrote an opinion that I should have surgery as soon as possible. My oncologist caved and approved it but was never happy about it even though I have felt better in the two years since the surgery than I felt in the 3 years before the surgery.

Thank goodness for Medicare and the Affordable Care Act. Thank goodness that this month is the Medicare Open Enrollment Month.  Changing Medicare Advantage Plans was easier than I thought it would be.  I should note that I had to go to a Medicare appeal process recently after the HMO denied a request for referral to the specialist. They then denied my appeal.  Medicare requires that they get to review a denial of an appeal.  Medicare reversed the denial saying this:

“The enrollee has been proactive regarding his disease and although carcinoid tumors are often seen by medical oncologists and surgeon, it is not their major interest; new regimens and drugs are always being considered.  Consulting with a specialist in his disease would be appropriate for this patient.”

and

“Our MAXIMUS Doctor Consultant says that the enrollee should be allowed to consult with the OON (out of network) specialist due to the plan’s network having insufficient expertise in this enrollee’s condition.”

Now I have changed plans, I can have my Carcinoid Specialist as my normal oncologist, not just a consultant. The problem is that now I also have to select a Primary Care Physician, a Cardiologist and a Cardiac Electrophysiologist and a Urinary Surgeon but it’s worth it.  I already feel better.

May we all have the best possible outcomes,

Cy

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Carcinoid and Results Based Medicine and Me was last modified: October 27th, 2015 by cy

14 thoughts on “Carcinoid and Results Based Medicine and Me

  1. I’m glad you moved to something that is more tailored to your needs. My first oncologist not only said all of that but gave me a date as to when I would die!!!! Yup, get your affairs in order cuz you’re done. My current Oncologist IS results based but is a bit more open about other solutions since we have tried everything. He asked me for suggestions and looked into some of them for me, sent me to a radiologist for embolization who then recommended the PRRT I had scheduled. Yes, he told me to leave his practice and go somewhere that would help me better than he could. I was amazed. You have me thinking about visiting Dr. Liu. 🙂 Keep Fighting, Buddy! ~ Ed

  2. It is amazing the difference is knowledge known the medical profession regarding carcinoid. In 2012 I was so sick two months in hospital and oncologists working out what to do. Oncologists from Adelaide have a special meeting and a list of the tough cancer pateints I was on the list. Plan chemo embolization of the biggest tumours a couple of the 15 or so I have in liver they have lost count. 4 treatments of Lutate. Since then 2 maintenance doses. When I was sick a gastrop tablet every hour, codeine tablet every 8 hours, and on TPN hooked up to a pump every night for 12 hours. This went on for 10 months. Well it worked apart from fatigue I am on Sandostatin 4 weekly and have my life back. Dont give up we are so lucky in Australia the Unicorn Foundation they have a website and facebook page a nurse available to help us and are trying to get government approval of lutate to make available to all.

    1. Malissia, you must remember that these plans depend on where you live. They differ or do not even exist in different parts of the country.
      That said, I chose HumanaChoice PPO.

  3. I’m glad you are moving forward on this. having the courage and fortitude to do this is who your are. it’s my privilege to know you and to be able to cal you my friend. fight the good fight! you know i’m behind you all the way and if there is anything i can do to help you out please let me know.

    love you buddy,
    philip

  4. I am so sorry that on top of this insidious disease, you are having to battle with unnecessary crap! I am undergoing the whipple (tummy tuck) this Friday but I am fortunate that in Sydney I am close to a centre that is fully aware of NETS. Please know that strength & support are being sent your way from downunder.

    Love Lisa xx

  5. Hi again cy.. I wrote to you awhile back. I too am a lungnoid, I saw Dr. Liu 10/7/15 I too had to pay for this out of my own pocket as KAISER would not refer me to a specialist, thay denied me saying ” it isnt medically necessary” like hell it isnt when you want to cut out a lobe of my lung!!! unfortunately .. I am not ols enough for medicare yet… 5 more years and I work at Kaiser so. Cal. Im curious are you in So. Cal and who is your oncologist??? just asking .. I have changed oncologists twice and am on to a third. It is so frustrating , my last oncolgist was not thrilled aboput me seeing a specialist , during my appt she even said to me , , so if you are not taking your med why are you here then??? she was referring to my arimedex for my breast cancer, which I had some gut feeling I shouldnt take till I saw Dr. Liu.. well low and behold Dr Liu told me NOT to take it till after my surgery and until kaiser reruns my breast tumor pathology to check for neuroendocrine markers as it will change my treatment and staging. so much for that. thanks for listening .

    1. I am in Denver. I chose not to name or blame her for her choices and I believe that Kaiser intentionally is staffed to pursue the “results based” philosophy. I am disappointed that it took 4 years to get the necessary information about why they are the way the are. If they had just told me the plain truth 4 years ago, I would have left when I became eligible for Medicare.

  6. Good for you brother after all it is your life should be your decision on doctor and treatment without being pushed around by doctors with cookie cutter solutions. Keep up the good fight and know we love you and are thinking of you.

  7. If you look at the research on “evidence based” or “results based” medicine, you will see Kaiser-Permanente has contributed mightily to this body of thought. In other words, they want to justify their process for denying care to patients despite the moral imperative that what they’re doing is just plain wrong.

    Unfortunately, Kaiser’s is a prevailing thought in conservative political corners, you know – those folks who want to overturn the ACA and “get rid of” Medicare. The only way to battle this is in the voting booth, folks. Thanks Cy, for sharing about your experience and your decisions.

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