A Treatment Team?

Russell8
Russell8 Member Posts: 7 Member
in Head and Neck Cancer #1

I read about a team of referring MDs treating cancer.

I have a primary care Doc at the VA that is nicknamed Dr. Clueless by her patients in the waiting room. Good for twice yearly bloodwork and refilling prescriptions.

My surgery was done at a nearby Air Force hospital (I am not active duty it was a VA referral) and the only Oncologist I have seen is the one working at the county hospital cancer radiation clinic (a VA referral) . They do not talk with each other. My surgeon sees me every 2 to 3 months. When I told him I was going in for a 6 week follow-up at the radiation clinic on Nov 8 he asked me to try and get a copy of the cd from the CAT scan I will be having. No one has ever talked about after care. The VA did mail me a pamphlet prior to surgery about nutrition and diet for after surgery .

The radiologist looked like it was the first time he ever been asked for what to do with my inability to open my mouth more than to get a straw in. Google is great , trismus information  and stretching exercises found.

Do people actually have interdepartmental treatment teams?

 

Russell

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited October 2021 #2
    Well Yes Some Of Us

    Have had different people for our treatment team.
    I guess we all do more or less, some more, some less.
    I guess I should feel really Blessed.
    And I do the Lord has been so good to me.
    As I remember during my first cancer in 2012/13 after a sore throat that wouldn't go away I was referred to an ENT.
    ENT scoped me and there was no doubt I had cancer.
    He then set up scans, CT with contrast and a PET scan, and a biopsy.
    He referred me to the health campus cancer center and got me set up with a radiation doc and a chemo doc.
    Also, they set me up with what they called a Nurse Navigator to help me through this whole process and help with any problems I might have.
    I was ever so thankful for her (Nurse Navigator) and she was great, right on top of things, and helped smooth out any rough spots.
    I then got a feeding tube and a port.
    Also, after being in treatment a bit the swallowing was getting compromised they set me up with a speech therapist which helps with all things
    like swallowing, speech, trismus, and gave me a swallow test also, etc.
    I think anyone going through H&N cancer treatment could benefit from a speech therapist.
    A little further on in treatment lymphedema set in so they set me up with a lymphedema massage therapist to work on my lymphedema and show
    me how to do at-home exercises myself.

    So all in all I had:

    • Family Doctor
    • ENT Doctor
    • Radiation Doctor
    • Chemotherapy Doctor
    • Nurse Navigator
    • Speech Therapist
    • Lymph Massage Therapist
    • Surgeon to put in the port.
    • Gastroenterologist to put in the feeding tube.
    • Techs to make my mask for radiation.

    I don't think I missed any if so I will edit later.

    So you can see I had quite a few people on my team and was well cared for.
    All I can say is not enough these folks were all super, super great people and took the best of care of me, I can't say enough good stuff about them.

    Take Care-God Bless-Russ

     

     

     

     

  • FOMC
    FOMC Member Posts: 25 Member
    #3
    VA WOES

    Russell,

    Dealing with the VA is something most civilians would never understand.  Quick synopsis of my journey with the VA is as follows: Had biopsy done by ENT at the VA; confirmed it was Cancer; referred out for Surgery to Civilian Hospital.  EVERYTHING from there on was done at the Civilian hospital.  Now, I have a follow up with the ENT at the VA every 6 months (just for show I believe) because I still see my Surgeon every 6 months as well.  

    PCP at the VA is exactly as you state, yearly physical/bloodwork and prescription writer only.  He's a former jarhead so, kinda easy to deal with.

    Jerry  

  • FOMC
    FOMC Member Posts: 25 Member
    edited October 2021 #4
    VA WOES

    Russell,

    Dealing with the VA is something most civilians would never understand.  Quick synopsis of my journey with the VA is as follows: Had biopsy done by ENT at the VA; confirmed it was Cancer; referred out for Surgery to Civilian Hospital.  EVERYTHING from there on was done at the Civilian hospital.  Now, I have a follow up with the ENT at the VA every 6 months (just for show I believe) because I still see my Surgeon every 6 months as well.  

    PCP at the VA is exactly as you state, yearly physical/bloodwork and prescription writer only.  He's a former jarhead so, kinda easy to deal with.

    Jerry  

  • Russell8
    Russell8 Member Posts: 7 Member
    #5
    VA Woes

    Thanks Jerry. My problem is that the VA ENT had done mucosal pinch biopsy never would do another biopsy or even take a good look in my mouth again.  I could feel it growing. When I went to a civilian oral surgeon (who said it was beyond his skills to remove) for one and the civilian path lab and then the VA path lab said it was cancer he still said it was not.  It was that he that he noted in my VA record that I had a fungal infection and he was no longer following me as a patient.   I had to fight the system and his ego for another 3 months before I could have surgery. He kept blocking my every move. No other MD at the hospital would talk to me. He is the head of the 3 MD ENT clinic. Finally I thought to go to the head of pathology there at the VA and he straightened him out. He referred me to an Air Force ENT.

    Have you had follow up PET or CT scans? How often?  Who orders them? That is what I need to find out and would hate to deal with that clown of an ENT again. I do see my Air Force surgeon at the base every 2 to 3 months.

     

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #6
    Depend on the AF surgeon

    Hi Russell, 

    If the Air Force head & neck surgeon is a thorough, experienced and caring surgeon ( which is what you need!!)-- then I would depend on him to do the necessary follow up scans, scopings, etc.

    You see him every 2- 3 months? That's great!!  So, if he does not set you up for a PET, or CT with Contrast, then you should Ask him. Mention it, bring it up and ask him what time frame should your next imaging studies be done.  If he does not address it, then You do it and ask him.

    I had a CT Chest April 20th. ( double lung pneumonia and lung disease)   That was ordered by my Pulmonary doc.

    Then I saw my Head & Neck surgeon July 12 and he ordered a CT Neck ( because the mass in my right neck is now Larger), and Russell, I got that CT Neck with contrast less than 2 hours later----, same day!!!!

    I have had 3-4 Chest X Rays, since June... And this past Friday my Pulmonary doctor called me on the phone, telling me all he's planjing and he said its time Now for another CT Chest!!  

    3 CT scans in about 5 months time.  Other procedures too coming up---, ...esophageal dilation Nov 1 st, and then another Broncoscopy too.

    I don't ask for or hint at any of this stuff, .... They order it, as per what they want to do and See.

    Russell, it sounds like perhaps ( hopefully?!!) that the Air Force doctor is your best bet, to Follow you.  Bring up scans, imaging, and see where it goes with him!

    Very best of luck and please keep telling us of your progress and problems.

    Crystal

  • FOMC
    FOMC Member Posts: 25 Member
    #7
    VA WOES

    Russell,

    Due to the enormous costs of CT/PET/MRI's it's more than likely the VA will want you to get them at their facility, if they have the equipment.  I know it sounds absurd but the Hospital on-base, where your Surgeon would most likely refer you to get the scans, is primarily for Active Duty. 

    Unfortunately, it seems like the ENT, who sounds like a PITA, would be the one to order the scans at the VA.

    As for the scans, I have had a total of 3 PET Scans (prior to surgery; post surgery; and a follow up at the 1 1/2yr mark (Surgery date was Jan 2018)

    Have had 3 MRI's and 3 CT Scans in between these times as well.  A little over protective you could say but I'm certainly not gonna complain.

    I'm pretty sure there is a standard protocol as to when scans should be done and I'm guessing it's gonna be different for each individual.

    Best of luck to you,

    Jerry

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #8
    Yes, the best places to get care are inter-disciplinary...

    Academic medical centers are typically set up this way but obviously not all folks live near one.  The problems come in markets where your specialists are all in independent groups and don't really talk to each other.

    Not all VAs are created equal either...the Iowa City VA is literally right across the street from the University of Iowa Hospitals and we provide their oncologists...so they get the same care as anyone would get at UIHC.

    Generally this applies to all medicine...the more fractured your providers are, the lower the quality of care you tend to receive particularly for chronic conditions like cancer, diabetes, COPD, etc...

     

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