My primary care doctor won't treat me!

Posted by hargonagain @hargonagain, Mar 30, 2018

I was diagnosed with Adenoid Cystic Carcinoma on February 9, 2018. Since that time, my primary care doctor has refused to treat me for basically anything. I made an appointment for a physical and while I was there I had a few questions and wanted referrals for a mammogram, a pap and ophthalmology. I also needed a TB test because my son's school requires an updated TB every few years. So, after I asked my questions, he refused to do the physical and I ended up leaving there with literally nothing but a referral for a mammogram. He is telling me that my ENT needs to refer me to these other specialists. Has anyone else had this issue before. Why would the ENT refer me to gynecology?? I feel like this doctor has washed his hands of me and I don't know why.

@hargonagain. I am not at all familiar with your current diagnosis of Adenoid Cystic Carcinoma. I am a volunteer mentor, and I have been treated by a variety of different specialists throughout my journey with liver disease and eventual transplant. I really think that I understand your frustration over your PCP's response.
I am thinking that your PCP wants you to go to the best qualified person – the ENT, specialist, so that he can manage your specialized care. Remember that our PCP's, even though we have a bond with them, are not qualified to treat our complex specialized needs. There is no sense in the PCP doing tests that may or may not be in your best interest. I highly encourage you to work through your ENT. If there is a travel distance that makes it inconvenient, maybe ENT and PCP can communicate about your care.
I do believe that your PCP has your best health in mind, but perhaps his communication skills are not his best asset.

I guess I am not understanding why the ENT would need to send me to a gynecologist for a routine pap smear. Adenoid Cystic Carcinoma is in my sinus cavity.

@hargonagain, to my understanding the referrals you requested could (and even should) be made by a PCP. I would be confused in your situation too. I'm tagging @adriennef @sepdvm and @jeffk to see if they might have any experience with transfer of care between ENT specialist and PCP or if they have insights to your situation.

Hi @hargon! I am feeling super frustrated FOR YOU! As someone that has battled oral cancer for 11 years, I have learned to always trust my gut and to advocate for myself. Your interaction with the PCP does not make sense to me, and it sounds like you are pretty frustrated too. In my 11 years of dealing with cancer, I have never had my PCP refuse to treat the rest of my body. Obviously, I have my ENT to focus on my head and neck, but I fully expect my PCP to have eyes over everything else. Would you consider discussing with your PCP? I know its frustrating to deal with doctors that refuse the care you need. I’ve been there! And finding a new PCP can be a huge hassle. I’m so sorry that you have to deal with this on top of everything else. Part of me wonders what your ENT would even say if you asked for a referral for a mammogram! Please advocate for yourself with as much strength as you can muster at this stressful time and keep us updated on what you learn!

What a frustrating situation! Absolutely your PCP should be fulfilling his/her responsibility for basic care and managing your continued preventative care. I just had a yearly physical and my CNP who is my primary care did just that. While I was frustrated with all the time spent on computer setting everything up and minimal time spent in an actual physical exam, I know that my routine preventative care is coordinated and continuing. I believe this falls under the "taking charge of your own healthcare" subject, which comes to the forefront with your cancer diagnosis. If this PCP is not inclined to continue with overall routine health care then you need someone who will. My oncologist at Mayo is always asking about my routine screenings to know that I am continuing with all this at home. I do feel like I get a more complete physical exam by my oncologist than I do at PCP, but I believe that is just the Mayo way, and I have found it difficult to find that level of care elsewhere. Frequently insurance allows for OB visits for Pap, etc without referral nowadays. The optho referral might be made better by the ENT if it involves future treatment due to the cancer. Some may have more experience dealing with radiation side effects, post op complications, etc, and someone the ENT has experience with could be better. Perhaps a TB test can be done at your county health department? I would take control of the situation and speak with the PCP to find out if you can continue to receive basic care there or you need to move on. You need someone you can trust and rely on, not create more frustration for you.

Hello @hargonagain I can feel your frustration. It's like a betrayal. In New Zealand we call the PCP a GP. There is a certain tension between getting care from the ENT team and going to the GP. We have to pay for the GP and it can be a waste of money going to one for anything head and neck related. However, issues to do with general health should absolutely be covered at the primary care level. You need your primary physician to be your rock. My close head and neck cancer buddy here in Auckland has adenoid cystic carcinoma – I know her GP has helped her along the way. Best wishes to you.

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