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Frustrated with the medical system

MattInVa
MattInVa Member Posts: 50

Need to vent.......

I have been trying to get appointments at the major cancer centers...namely Hopkins and MD Anderson.

Earliest dates are mid to early Nov respectivley. I am stuck in the position of not being able to consult them prior to taking a treatment. I had hoped to get specialist opinions prior to starting on a treatment which may exlude me from trials and such. (I am Stage 4, Grade 4 pT3b, mets in lungs)

So now I am going to start a course of Vortrient starting Friday. So now I have to play the waiting game for 2 months before my next scan and the possibility of seeing a RCC specialist. I cant believe they take 4-8 weeks to schedule this, at my stage I don't believe time is on my side. Hopkins only has 1 doctor that will see me due to the nature of my RCC and he is away for a period of time. MD Anderson can't see me for 4 weeks and won't see me if I start a treatment in the meantime, at least til I get a progress scan.

 

Just very frusterated,  It took Hopkins a week to get back to me only to tell me 6 weeks.

I understand that much of this is wait and see, but damn. I feel completely powerless. 

At least I qualified for relief on meds from Novartis. I have spent my stoploss on insurance at least, but I am sure I will have to fight them for the stack of claims coming through.

 

Thanks for listening....

 

Matt         

Comments

  • JoanneNH
    JoanneNH Member Posts: 115
    If you are still looking to

    If you are still looking to be seen, try contacting Moffitt Cancer Center in Tampa, FL.    Dr. Mayer Fishman is brilliant.   Not sure how far out he is booked, but it wouldn't hurt to give them a call.

  • Footstomper
    Footstomper Member Posts: 1,237
    I understand your frustration

    Are you trying to get appointments yourself? My general practitioner recommended me to a urologist who recommended me to an oncologist and my kidney was gone in about 3 weeks.

    I see Dr Hussain at University of Maryland Medical Centre (Baltimore).

    Dont give up, and dont despair.

  • MattInVa
    MattInVa Member Posts: 50

    I understand your frustration

    Are you trying to get appointments yourself? My general practitioner recommended me to a urologist who recommended me to an oncologist and my kidney was gone in about 3 weeks.

    I see Dr Hussain at University of Maryland Medical Centre (Baltimore).

    Dont give up, and dont despair.

    Oh my kidney is long gone. I

    Oh my kidney is long gone. I had it out 3 days after my CT scan.

    Just trying to get opinions from the research centers. I just don't have the best feeling about my oncologist.

    An yes I have been trying to make apoinments myself, my oncologist that I war refered to by my urologist has been no help in refering me for a second opinion when I expressed my desire to see a RCC spcialist.

     

     

  • Footstomper
    Footstomper Member Posts: 1,237
    MattInVa said:

    Oh my kidney is long gone. I

    Oh my kidney is long gone. I had it out 3 days after my CT scan.

    Just trying to get opinions from the research centers. I just don't have the best feeling about my oncologist.

    An yes I have been trying to make apoinments myself, my oncologist that I war refered to by my urologist has been no help in refering me for a second opinion when I expressed my desire to see a RCC spcialist.

     

     

    I'm very satisfied with my onc

    Maybe if you went back to your urologist?

  • Allochka
    Allochka Member Posts: 974

    I'm very satisfied with my onc

    Maybe if you went back to your urologist?

    Is there any cancellation

    Is there any cancellation list you can join?

  • a_oaklee
    a_oaklee Member Posts: 566
    family doctor?

    Hi Matt.  Our family doctor,  GP, made a phone call on our behalf and the specialist met us within a couple days, on a saturday morning.  We were so impressed.  I think doctors help other doctors!   Maybe you could try that, and also perhaps a teaching university in your state.  Best wishes.

     

    Annie

  • foxhd
    foxhd Member Posts: 3,181
    a_oaklee said:

    family doctor?

    Hi Matt.  Our family doctor,  GP, made a phone call on our behalf and the specialist met us within a couple days, on a saturday morning.  We were so impressed.  I think doctors help other doctors!   Maybe you could try that, and also perhaps a teaching university in your state.  Best wishes.

     

    Annie

    self advocacy

    Matt, many here have become very capable as their own health care advocate. Sort of the squeeky wheel syndrome. Keep pushing. You'll be ok.

  • angec
    angec Member Posts: 924
    Matt, it is frustrating. I am

    Matt, it is frustrating. I am glad though, to hear you are on Votrient.  Votrient is a great drug.  Read my mom's story on the post Fox made about second opinions.  She was stage four also and on 200 mgs of Votrient and was NED on the previous scan, this last scan has an inflammed lymph node.  Dont' think you are losing time, Votrient is a good selection! Hope this helps you feel better. But, I still hope you can get into the docs soon.  xxoo 

  • Kist2001
    Kist2001 Member Posts: 5
    I agree you need to get in a

    I too was surprised at just how difficult it was to go see an oncologist at a major research facility.  It took me 2 months or so to negotiate an appointment.  Would have been longer if I had not had all my info emailed to them immediately.  They will not usually see you unless they have your slides and an independent review of your pathology.  I think surgery is the best bet for lung mets if possible.  Then IL2 as if you qualify the benefits can be great.  Yet understand the risk is great too.   Meds have a limited lifespan and you eventually will move through them.

     

    That being said get your appointment with a great doctor.  If the scheduler is being an issue ask to speak to a supervisor.  I had that problem at a world renound center with a lousy case worker assigned to my file.  A call to a supervisor got me assigned to someone else.  Problem solved.

  • Texasgranny38
    Texasgranny38 Member Posts: 24
    MDAnderson

    I understand your frustration, Matt.  

    I can't say enough about the care and treatment at MD Anderson.  If you decide to go there, Dr. Christopher Wood is the best and I highly recommend him.  He is my RCC oncologist.  

    TexGran

  • MattInVa
    MattInVa Member Posts: 50
    Have the appointment

    I was able to get an appointment on the 12th of Nov. It falls about 3 weeks before my first scan while on Votrient.

    I went right to the doctors scheduler bypassing the hospitals, I also went directly to the clinical trials pages which has direct numbers in an effort to side slip the main desk, still the best they could do was Nov, although I am on the cancellation list if something comes open.

    I have been on Votrient for over week and a half, no real bad side effects but I suspect its cumulative and may get worst with time on.

    Mild nausea and loose stool. I have increased my water intake to avoid dehydration.

    End of this week I have a lab to look at my kidney and liver functions.

  • cheatinlil
    cheatinlil Member Posts: 197
    MattInVa said:

    Have the appointment

    I was able to get an appointment on the 12th of Nov. It falls about 3 weeks before my first scan while on Votrient.

    I went right to the doctors scheduler bypassing the hospitals, I also went directly to the clinical trials pages which has direct numbers in an effort to side slip the main desk, still the best they could do was Nov, although I am on the cancellation list if something comes open.

    I have been on Votrient for over week and a half, no real bad side effects but I suspect its cumulative and may get worst with time on.

    Mild nausea and loose stool. I have increased my water intake to avoid dehydration.

    End of this week I have a lab to look at my kidney and liver functions.

    Matt

    Matt,

    It also took us a long time to get into MD Anderson.  The good thing is that you are on Votrient, so you are not doing nothing while you wait.  You are actively fighting cancer while you wait.  That isn't wasted time.  MD Anderson seems to move at their own pace.  Hang in there.  THat date will be here before you know it.

  • mrou50
    mrou50 Member Posts: 389
    Similar

    Matt we have similar stories.  I can tell you the Votrient works I have been on it for almost a year and by my third scan (I believe) I was in NED and I have had one scan since then and I am still NED at this time anyway.  Votrient can be a pain on your body but it does work.  You are right the medical system sucks especially when it comes to this disease. 

     

    Mark

  • DonMiller
    DonMiller Member Posts: 109
    Oncology

    I took both approaches.  I made an appointment with and officially became a patient of Robert Motzer at Sloan Kettering.  In the meantime I am monitored by a very capable oncologist locally . I know I am at high risk so I firgured it best to cover my bases.

  • Richgels1
    Richgels1 Member Posts: 26
    Votient

    Hi Matt,

    I think you are doing all you can from the sound of it. I've been on Votrient now for 5 months and just wanted to ad one suggestion. The loose stools is an issue for me also and have found that taking imodium pills will reduce the sudden urges to go and the looseness. I take one at about 11am each day, and another one with my pills later in the day. It makes the bowels feel better also. If you don't go one day. Don't take the imoduim the next day until you go. I take another one then right after I go. This has helped me. Hopefully you will be lucky and symptoms won't get worse.

    Keep up the good fight, Scott