Problems Accessing Follow-up Care

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jojoxoxo
jojoxoxo Member Posts: 34
edited June 2014 in Canadians Affected by Breast Cancer

Hi,
I'm a Canadian breast cancer survivor [Stage II, Grade3,1 positive lympth node] and moved back to Ontario a few months ago after living and working in the USA for 20 years. I live in the Halton area. I'm due for a 6-month follow-up this February and am appalled at how difficult it is to get an appointment anywhere in a timely fashion.

I was fortunate enough to find a family practitioner but she refused to schedule a colonoscopy for me even though I have never had one and at age 53 and with my health history I am supposed to have had a baseline colonoscopy for 3 years now. So now I'm on a waiting list for a new family doctor.

I couldn't get a follow-up appointment at the Princess Margaret and now I'm just stuck. They would not give me a referral at the Walk-In Clinic because they said they would not be able to "follow up". Denying someone a follow-up appointment because there's no GP to follow-up with.

I didn't even have healthcare insurance in the USA but at least I was always able to access medical care---I don't understand the system here, not being able to get necessary medical care because you can't get a referral. I don't understand why there are no urgent care centers or family practice centers that will give you a referral if there is some urgency in getting one. I mean, I can't go to the emergency room for a cancer follow-up appointment. I may end up having to drive 1000 miles in February to have my 6 month followup in the USA. I think Canadian health care is a joke.

Any suggestions anyone as to how I can access care?

Also, if I were to let's say, find a lump -- there has to be some way to get medical care, right?  Please someone, reassure me because I'm scared. I mean, they cannot just deny you care because you do not have a family practioner and let you die can they?

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2011

    The Ontario system is centered around the family doctor.  The family doctor provides the basic care and schedules most of the basic tests, and provides referrals to specialists.  You may stay with a specialist for a period of time but eventually your care and follow-up is transferred back to the family doctor.  This type of system can be a problem if you can't find a family doctor, if you don't have a family doctor that you like or if your family doctor isn't responsive, but as a rule the system works.  Personally I like having one doctor who knows everything about my health and who coordinates all my healthcare. 

    For those who don't have a family doctor or who need one, there are Urgent Care centres and Family Practice centres.

    http://www.haltonfamilyhealth.com/home.htm 

    http://www.mcithedoctorsoffice.com/patients/clinics.cfm?3704001D2010043D705756 

    http://www.appletreetoronto.com/patient-home.php 

    There are also quite a number of medical centres in the Oakville/Mississauga/Halton area with many doctors on staff and evening and weekend clinics for their patients.  With the number of doctors that most have, I would think that you can find a new GP at any of them.  One example: http://www.trafalgarmedicalclinic.com/ 

    And here's a site that lists doctors in Halton who are accepting new patients: 

    http://www.halton.ca/cms/one.aspx?objectId=15476 

    I hope that helps.  I do understand your concerns. When I moved down to the U.S., being away from my regular doctors I had lots of trouble getting the care I needed.  I actually did fly over 1000 miles to see my breast surgeon in Canada because I couldn't get in to see one where I lived in the U.S.. 

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  • jojoxoxo
    jojoxoxo Member Posts: 34
    edited November 2011

    Thank you for those links Beesie -- I will follow up.  Part of the reason I remained in the U.S. for as long as I did was because of the comfort and reassurance of seeing the same oncologist who I've seen for over a decade.  Maybe just moving to a different country and trying to get in the system is difficult no matter if it is U.S. to Canada or vice-versa.  But I don't believe anyone should be denied care and so far, that is what has happened to me.

    So far I have found that the general practioner has functioned more as a gatekeeper to deny me care.  She wouldn't even prescribe a migraine medication that a specialist whom I saw had put in writing that I needed [and not some kind of narcotic pain-killer either]-- because she said she wasn't familiar with the medication.  Well, that's her job! -- to familiarize herself with a medication. And the only reason I had to get the letter from the specialist was because she said "I have no proof you have migraines.".  Well, isn't my word worth something.  I'm the one in excrutiating pain and throwing up , and she doesn't believe me?! ridiculous.   

    edit: thanks again for the links.  I'm in Burlington and clicked on the Halton link, and I am already on the waiting list for one of those doctors.  So far no phone call with even any idea of when I might get in.  But I guess I'll also try some of the other docs listed, with the huge exception of one of them, who is the terrible unhelpful doctor that I have already seen.  Yes, she too is accepting new patients (the more pity on them). 

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  • jojoxoxo
    jojoxoxo Member Posts: 34
    edited November 2011

    So far I have been turned down at the Princess Margaret in Toronto and the Juravinski Institute in Hamilton because they are not accepting new follow-up patients.

     If anyone who didn't originally receive their treatment here in Ontario was successfully able to get in somewhere for follow-up I would love to know where.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited November 2011

    It's a long shot, but you might call your US docs and ask them if they can help you with a referral to a Canadian doc.  There are cross-border specialty conferences, and your US docs may have developed relationships.

    As long as you're trying everything, it's a thought...

    LisaAlissa

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited November 2011

    Ellemint -- I'm thinking that the reason you haven't been accepted at either PMH or Juravinski is because you are a 10+ year cancer patient.  Generally, patients who have been NED since tx are dismissed from the care of an oncologist after 5 years, with care turned over to the family physician, as Beesie has suggested.  

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  • jojoxoxo
    jojoxoxo Member Posts: 34
    edited November 2011

    Thanks, LisaAlissa, I can only try.

     My U.S. oncologist was the one who recommended I go to the Princess Margaret for follow-up but when I asked him for a specific name he couldn't come up with one.  Maybe though, even without having a professional relationship with a doc over here, a referral from him might at least have some more "pull".

    And I actually taught some courses (in electrophysiolgical intra-operative monitoring) at the U of T medical school way back when but most of those guys are long retired, wouldn't even know how to start tracking them down, and they were neurosurgeons. 

    That's the other thing, I'm highly educated, I've worked in healthcare---and look at the difficulties I'm having.  Think of someone who maybe hardly speaks English and just moved here---I shudder to think the problems they would have.  On the other hand, I have noticed that there seem to be a lot of helping programs for "new" canadians, ---maybe I should try to get help from some of them lol.

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  • jojoxoxo
    jojoxoxo Member Posts: 34
    edited November 2011

    Lindasa,

    Re: being more than 5 years out.  I have also thought that might be a factor.  But my U.S. oncologist saw me every 6 months even 10 years out.  He knows my particular case and risks.  If he thinks I need 6 months follow up then I believe him, not some standardized recommendation from the Canadian Medical Task Force( and recent news shows us just how great their recommendations).  And I just finished with Aromasin a year ago.  I've been under active treatment for the last 12 years.

     I had a highly aggressive cancer at a young age, and I would not trust the family practitioners I have seen here to have the specialized knowledge necessary for BC followup.  For example, we are at increased risk of developing lymphomas and myelonoma disorders as a side effect of our treatments.  My family doctor didn't even do bloodwork on me, and I don't mean the cholesterol kind.  

     I also wouldn't expect most GPs to understand my problems with lymphedema ( a problem that even most oncologists and surgeons are very ignorant of).  

    And I already have proof of this.  The original family doctor (the one I am dropping)  refusing to book a colonoscopy for me even though there are clear guidelines that someone with my history and my family's history of colon cancer should get a baseline colonoscopy at age 50.   

    Average statistics mean nothing to me.  I care about MY life and I am going to continue advocating for care even if I have to go to my member of parliament.  It should be an individual decision of a breast cancer survivor and the recommendations of her oncologist that follow-up is based on, not generalized guidelines. 

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