• What should we expect in terms of case management between specialists and primary care?

    Asked by cand2012 on Thursday, December 6, 2012

    What should we expect in terms of case management between specialists and primary care?

    My father was treated for small cell lung cancer. While treatment was successful so far, the cancer triggered an auto-immune response, LEMS. In trying to treat this (difficult) he is being bounced from specialists back to his primary care MD and then back. This is causing much time delay at each step, never mind the confusion to my 80-year old parents.
    What should be our expectation in this case? I assumed the oncologist would now be the main coordinator of care, not the primary care, who frankly does not have the expertise to deal with this.

    7 Answers from the Community

    7 answers
    • ticklingcancer's Avatar

      With me, I was told to continue seeing my primary care physician for anything unrelated to my cancer treatments. For you, it sounds like this is something that would need a bit more attention than a cold. I would look for a specialist that can help with the LEMS. Has the Oncologist flat out said this is something he can't treat your father for?

      almost 8 years ago
    • nancyjac's Avatar

      That is probably a bad assumption. His medical oncologist should be the primary coordinator during active treatment for all things directly related to the cancer (chemo, radiation, cancer surgery, diagnostic and monitory tests for cancer, etc.). Anything else (irregardless of whether it was triggered by cancer or a pre-existing condition to the cancer) would be coordinated through his PCP as far as referrals go, but probably not scheduling. His PCP may not have the expertise to treat it, but his oncologist who have even less. But his PCP should be able to refer him to a neurologist whom he can then deal with directly for treatment.

      You might check with the city or county department of social services. The may have some elder care services available to help him with making or keeping track of medical appointments.

      almost 8 years ago
    • RachaelC@StF's Avatar
      RachaelC@StF Community Outreach Coordinator 317-528-7794

      Hi cand2012,
      Nancyjac knows her stuff. His med onc will handle everything related to his cancer treatment. Your father's PCP should then continue care for everything not related to his cancer treatment. If your PCP cannot handle LEMS, he will likely refer you to a neurologist who can.
      I know all these appointments would be alot to keep track of, but the American Cancer Society has this really awesome packet that your father (or you) can keep all cancer treatment related items in. It has lots of different tabs to keep medicines, treatment plans, appointment times, etc. If the hospital he gets treatment from doesn't have an American Cancer Society resource center, call the 800 number listed on ACS's website and let them know you want a resource kit. They will mail it to you free of charge.
      The resource kit can also be helpful when going between appointments with his oncologist, PCP and eventually a neurologist. It is the patient's responsibility to be proactive about all things cancer treatment: drugs, type of treatment, etc. Normally, his oncologist would copy his PCP on all visits and treatments in his chart, but every doctor does things differently. You could always request his PCP's nurse to call the oncologist's office and get the records too.
      Hope this helps!

      almost 8 years ago
    • cand2012's Avatar

      Thanks, ticklingcancer...what you were told makes sense to me. He is being seen in Neuro for the LEMS. The LEMS is causing increasing inability to walk and there are side effects to either that or the treatment (e.g., incontinence). I see these are related to the cancer, but Onc and Neuro aren't helpful. In the last conversation about his inability to walk, the oncologist actually told them she didn't know what else to say, they should go back to PC. There have been other issues such as getting him the appropriate cane and wheelchair. He had seen the specialists, but they didn't say anything, so finally my mother was able to call the PC and get these ordered. But this just necessitates more phone calls and wait time. Now the PC and neurologist are writing conflicting orders for vitB12 dosing. I don't think the PC should even be involved.

      My parents live in a different state and don't want much "help" from me. I am trying to understand what we should expect from the medical system so I can get them lined up with the help they need to navigate this.

      almost 8 years ago
    • cand2012's Avatar

      Thanks nancyjac and RachaelC. I've just found this site and forum and will take a look at the ACS resources you referenced.

      I think his particular PCP is part of the problem (reluctant to refer). I know my parents need to be more proactice, but they're definitely part of the generation that doesn't question authority or want to "bother" doctors! I'm thinking maybe some Elder Care services (as you suggested), or Palliative Care, could be helpful, if I can get them invovled.

      almost 8 years ago
    • Harry's Avatar

      I guess I'm lucky. :-) Everybody seems to be talking to everybody else. I went to a dentist for an abcessed tooth associated with a swelling in my jaw. He sent me to an endodontist (root canal specialist) because of difficulties he had gaining access to my root canals. The endodontist sent my to an oral surgeon because the root canal and antibiotics didn't have any effect on the swelling. The oral surgeon did a biopsy and sent me to the oncologist that my PCP referred me to 2 years ago. As near as I can tell, everyone is in the loop. The oral surgeon talked to the endodontist and the original dentist. My oncologist has talked to the oral surgeon. And my PCP has a message on my answering machine asking if he can help.

      It does help to know which one to talk to. The PCP should be at the center of the network and the specialists should keep the PCP informed of what is happening. It also helps if the patient keeps himself or herself in the loop, too. Specialists tend to have blinders on. They are who you want to talk to in their field, but they won't be of much help in other fields.

      almost 8 years ago
    • SueRae1's Avatar

      I am very fortunate. All my teams talk to each other and are in the loop about all my treatments. My oncologists take care of all things cancer related (and even a few non cancer related items) because i see them a minimum of every 3 weeks. My PCP takes care of most everything else, though i also see other specialist regularly. The hospital I'm at has great online records and each doctor is updated on what is happening when I see them. In fact a saw my Pharma specialist on Wednesday and he comment on the fact that I had finally seen the oncologist who replaced the one I was seeing for my renal cell carcinoma. Right now my my Primary Oncologist treats my breast cancer with input from all my other doctors.

      almost 8 years ago

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