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Continuity of care

Continuity of care

Posted by Essjay on Jan 23, 2020 3:25 pm

I’m entering the hopeful watching period of my journey. I’ve had surgery, chemo, and radiation and now we hope the cancer is all gone and won’t return.
My radiation oncologist has signed me off to the care of my family doctor, and my medical oncologist plans to do the same this summer. Just one problem, I have no family doctor. She’s retired, sick, on her own cancer journey. I’m on a waiting list for a new doctor, because the clinic I was at cannot take on her patients.
I have mixed feelings - I like my doctor and I wish her well on her journey, but it’s not like I’d formed a close relationship with her, I’d seen her only twice before I found my tumour. I’ve been in Canada 10 years and she was my 5th doctor, all the others left to go to other places. So finding a new doctor is not a new thing for me. But, I wasn’t sick before, and I wasn’t dealing with a situation where a change needs to be investigated, and where I need to trust those caring for me.
Im not looking for answers, but I wondered if anyone else has had a similar experience during their care?
Triple Negative Breast Cancer survivor since July 2018

Re: Continuity of care

Posted by ACH2015 on Jan 23, 2020 5:32 pm

Hi Essjay‍ 

Truly a good news / bad news situation.

At least you've got the medical oncologist until this summer, so it buys you some time there. I'd suggest asking the medical oncologist if they have had patients in a similar situation, and how they managed without a family doctor in the event something you want checked out comes up - if you are still doctorless.

I feel somewhat trapped in my situation re family doctors. I've always lived where I worked, but since retiring, and my wife having only a couple years left in the workplace, I feel trapped having to live a reasonable distance in my current geographical area to keep the family doctors we currently have.

That was not the plan, but it is the reality,

ACH2015

 

Re: Continuity of care

Posted by Wendy Tea on Jan 23, 2020 5:58 pm

Essjay‍  Your story touches me also. I moved over four years ago and in the GVRD there is a list that you can add your name to so you can be assigned a family doctor. Yes doctors are in short supply here also. I was lucky and met my new doctor from the UK less than 2 years before my diagnosis. She met with me several times in March during a plethora of medical tests and then in the midst of it all, she went on maternity leave. By that time I had been handed off to my surgeon, and subsequently my oncologist. When I had recovered enough to need a family doctor I met with a locum covering for my doctor while she was away. I liked her very much and decided that all subsequent appointments would be with her on those days she was at the clinic. This worked really well until she moved to Calgary at the end of the summer. By that time I was well on the way to recovery until I crashed and burned on Letrozole. Luckily my oncologist stepped in and saved me. Now my doctor is back to work so I am once again in good hands.
I think the key is that provincial medical systems need to have an on line forum where people can sign up to be assigned a family doctor in their area. Have you checked into this is your part of the world?
Best wishes on your search.
Wendy Tea
Healing takes time and opportunity. Wendy Tea

Re: Continuity of care

Posted by Essjay on Jan 23, 2020 6:20 pm

Wendy Tea‍ I’ve registered with our local doctor finder service. They ‘aim’ to contact you within a month about your needs, but there’s a shortage of doctors taking new patients, especially close to home. My husband used the service a couple of years ago and they never got back to him - luckily our new practice was taking on patients. No chance of me transferring, they have one doc on mat leave, one doc retiring (mine), her partner is also a doc in the practice involved in her care so cutting back, and the NP’s have full lists...
Triple Negative Breast Cancer survivor since July 2018

Re: Continuity of care

Posted by LPPK on Jan 24, 2020 10:27 am

Essjay‍  I live in eastern Ontario and  go to a medical centre in a nearby town of 1000 pop. My medical  and radiation oncologists have both finished with me, 2 years and 4 months ago respectively,  and referred me back to my  family doctor.  My radiation oncologist held of referring me back until I had a survivorship plan.  Unfortunately my doctor is away on medical leave, her breast cancer is back,  and so I have been assigned a nurse practitioner.  There now are no doctors on staff at this medical centre...only nurse practitioners and they work at 2 different local centres. I feel fortunate that I do have a medical person I can see.

You mention that the NPs have full lists.  With your radiation oncologist signing you off to your family doctor and your medical oncologist signing off this summer they do so with the idea that there is someone there to continue your health care. Have you been given a survivorship plan? Is it possible that your cancer centre could help you get on to one of the NPs lists because your care is expected to be continued?  I wish you the best in finding a health care provider.

 

Re: Continuity of care

Posted by Cynthia Mac on Jan 24, 2020 10:35 am

Essjay‍ , don’t be afraid to network on this one - play whatever card you need - in my case, my “spokesperson” played the “she’s young and low maintenance” card. (I was at the time!) It all happened when a relative was at a walk-in clinic or sitting in front of a doctor who was filling in for her GP. She made the pitch, and I got a doctor!

If you ever end up at a walk-in yourself, put your case forward, you just never know!

Congratulations on making it to this phase of the journey!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Continuity of care

Posted by scaredysquirrel on Feb 29, 2020 11:17 pm

Finding a GP especially here in the lower mainland is very difficult.  I had a struggle for many years before my cancer diagnosis.  I still go to a walk in clinic, as my GP works there a couple of days a week.  I can actually make an appointment with him where before I just had to take a number and wait over an hour and half sometimes to see him.  It's frustrating that he's only there on Thursday and Sunday.  His main practice is in Vancouver.  Thankfully, I still see my chemo Oncologist.  Her office is in the hospital.  I only see her now once every 6 months, I guess that's a good sign!  Good luck in finding a new Dr.
 

Re: Continuity of care

Posted by Essjay on Mar 1, 2020 9:04 am

Thank scaredysquirrel‍, I still feel like I have quite a bit of care going on at the moment. I still see my oncologist (July should be my last appointment), and I still see an FPO when I go for my Zoledronic acid infusion (I’m through 1 year of 5), although I’m kind of thinking I’ll stop after 2 years.

The clinic where my family doctor was, is undergoing a transformation. The town has decided to run it as a social enterprise with all profits going back into the practice (like the mayo clinic). My family doctor has stepped down indefinitely, to concentrate on beating cancer, her husband and doctor in the practice has reduced his hours to attend appointments with her and to care for her, the other family doctor is on maternity leave. The practice is offering 250 less appointments each week, through temporary family docs and a nurse practitioner. 

ive decided to see what happens - my records are still there. I can see someone as a walk-in for now if I need to. The practice will be taking physicians on on a salary, rather than partners - recruitment is their issue, like so many places in Canada. So overall, I am helpful that I can stay there and I’m not rushing to move, just as well since I never heard from ‘doctor finder’ who have a commitment to contact you within 1 month (failed)...
Triple Negative Breast Cancer survivor since July 2018

Re: Continuity of care

Posted by scaredysquirrel on Mar 2, 2020 2:51 pm

Sounds like we are receiving the same treatment - Zoledronic Acid Infusion for 5 years.  I'm about half way through my treatments.  So far, so good with that.  May I ask why you want to stop your treatment? I've decided to stick it out, since I got through the worst of the treatments - chemo and radiation.  I'm okay on the Letrozole although every now and then I get a terrible pain in my left ankle, at night especially, I've also had a pain in my right wrist thumb area.  As well, I've had some weight gain.  I was on an antidepressant which may have contributed to my weight.  I've mentioned a couple of things to my chemo Onc. but she always tells me there's no correlation to the Letrozole.  I'm sure that some people have side effects.  Oh well, I'm doing okay.  All the best to you.

Re: Continuity of care

Posted by Essjay on Mar 3, 2020 7:29 am

scaredysquirrel‍ why am I thinking of not doing 5 years of treatment?

several reasons:

1) the medical profession seems divided as to whether Zoledronic acid prevents metastases, and some of the papers I’ve read suggest that TNBC metastasizes to bone less often than other cancers anyway.
2) 2 years treatment should give my bones a good amount of extra strength to counteract the osteopenia 
3) the treatments are rough on me, and take a real investment of time and my body each time
4) I need my cancer treatment and checkups to stop for the good of my mental health - I get anxious about every exam, and think if I wasn’t being examined I’d be less anxious. 

All the best to you. Essjay
 
 
Triple Negative Breast Cancer survivor since July 2018

Re: Continuity of care

Posted by scaredysquirrel on Apr 2, 2020 11:01 pm

Sorry to hear you are having such a rough time.  5 years is a long haul alright.  I was told the Letrozole was to prevent any further cancer and the Zoledronic Acid is to prevent osteoporosis from the Letrozole.  Anyway, it's your decision and wish you all the best.

Re: Continuity of care

Posted by Essjay on May 7, 2020 11:09 am

So, now I’m facing up to sorting my lack of family doctor situation...

My family doctor stepped down in January, to fight cancer herself. She was a partner in her clinic with her husband, who has had to step back to care for her. A third doctor was on mat leave, but returned in April two afternoons a week. The privately owned practice has now become a public enterprise owned by the town, with staff on salary. They have arranged temporary cover to maintain services at the clinic, but it will take some time to recruit new permanent doctors at the clinic and there is no capacity to register with the 2 nurse practitioners on staff. 

After my last Zoledronic acid infusion at my local cancer centre I have decided not to continue with that treatment, where I was treated by a Family Medicine doc who has specialized in oncology (FPO). I see my oncologist in July for what I expect to be my last visit, and when I expect to be released to the care of my family doctor. The doc at my local Cancercare centre has ordered my annual breast scan (MRI this year), but the question as to who will review it for me came up...it’s for me to resolve...

So, I have been puzzling out how I can get answers from my family doctor clinic. Can they provide continued care that includes 6-monthly physical exams, annual breast scans and review of results, referrals as necessary, through their temporary uncertainty and into the long-term, and how does it work if I am without a named doctor? Who do I ask? The clinic website has not been updated for 2 years, they communicate anonymously through Facebook. If I call the clinic, the alligator on reception has to be negotiated - will she understand my request for advice, will she know who to point me to? If I make an appointment to see a doctor to ask this question when I have no other clinical reason for visiting will I get an appointment? Will a temporary doc know the answers?

So, we are trying another route. Hubby is registered with an NP at the clinic, and has regular treatment for his B12 deficiency, and he has her email. So we’ve emailed the NP with my questions to see what happens.

My fallback will be to continue to go for these checkups at the Cancercare centre with the FPO. And it was reassuring to know that I could do this when I talked to the nurse at the clinic yesterday, when she called with questions related to my MRI being ordered. 

I have been impressed with my care, and I feel fortunate, but I also recognize that I’m self-advocating and ask lots of questions, and I have the resources to do things for myself. Not all patients are the same, or as fortunate and I wonder how many fall through the cracks...
Triple Negative Breast Cancer survivor since July 2018

Re: Continuity of care

Posted by Wendy Tea on May 7, 2020 10:56 pm

Essjay‍  Will this help? 
https://forms.gov.mb.ca/family_doctor_finder/
Healing takes time and opportunity. Wendy Tea

Re: Continuity of care

Posted by Essjay on May 8, 2020 7:35 am

Thanks Wendy Tea‍ i registered with the doctor finder service in January. They have a goal of responding in 30 days but I haven’t heard from them. My own research shows that there are no doctors taking on news patients in Manitoba...
Triple Negative Breast Cancer survivor since July 2018

Re: Continuity of care

Posted by Wendy Tea on May 8, 2020 8:40 am

Essjay‍  It was the same for me when I moved here but then the province went on a hiring spree and I ended up with a lovely doctor from the UK. And then she got pregnant and was on maternity leave from my diagnosis to my recovery!  She is now working from home. Hopefully your province will entice new doctors.
Healing takes time and opportunity. Wendy Tea

Re: Continuity of care

Posted by Kims1961 on May 8, 2020 9:40 am

Essjay‍ So sorry to hear about your physician issues.   Recently, someone asked if my benefits at work covered online doctors or oncology navigators.  Unfortunately, my  benefits didn't at the time - an oncology navigator who helps guide you through this maze sounded wonderful to me, particularly if benefits covered it!  There are now "virtual doctors" ,  one organization is called MAPLE - and they do cover breast cancer.

https://www.getmaple.ca/doctors/

Just wondering if you have benefits and what options you might be able to access through them or through Maple or other online service?

Just a thought.  Hope you are having a good day today :)
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Continuity of care

Posted by Essjay on May 8, 2020 10:36 am

Nice idea Kims1961‍ but I need physical exams...
Triple Negative Breast Cancer survivor since July 2018

Re: Continuity of care

Posted by law on May 8, 2020 2:14 pm

Essjay‍ 
I can relate to your Doctor Hunt after several years..... I had the same challenge.
My pain oncologist functioned as the most constant medical professional during my cancer journey and recovery.
No family doctor is available here in Victoria as  many doctors are retiring or not taking new patients, and some walk-in clinics refused to accept me as a cancer client due to too much work for them.
Finally, I found a 'walk-in clinic doctor' who has agreed to be my #1 medical contact from here on out....I consider myself fortunate...but most of us are in the same boat as you.
Just keep hunting and hunting and hunting as you make the rounds of the walk-in clinics. It may take another year, but someone will look upon you as an interesting patient compared to  their boring repetitive days.
law

Re: Continuity of care

Posted by WestCoastSailor on May 9, 2020 11:37 pm

Essjay‍ 

I was involved in recruiting doctors for service in Northern Saskatchewan and I know that many rural facilities face similar challenges. I was convinced that Nurse Practitioners were the solution but there was so much resistance in the medical establishment.

Still it doesn't resolve your problems. All I can suggest is that the "Squeaky wheel gets the grease."  Sounds like a news story to me.  Politicians love to provide solutions to this kind of issue for rural constituents.

Angus
My story: http://journey.anguspratt.ca

Re: Continuity of care

Posted by Essjay on May 19, 2020 2:09 pm

Progress update! I’m on a list! New docs starting at my current clinic in the fall and I’ve got myself on a list to be taken on. Whoop whoop!
Triple Negative Breast Cancer survivor since July 2018

Re: Continuity of care

Posted by Brighty on May 19, 2020 2:20 pm

Great news Essjay‍! 
Help is out there. All you have to do is reach out.

Re: Continuity of care

Posted by Lacey_adminCCS on May 19, 2020 2:25 pm

I'll join you in that whoop whoop Essjay

So important to have a consistent doctor who knows your medical history that you can see! 

Re: Continuity of care

Posted by Cynthia Mac on May 20, 2020 10:00 am

Congratulations! That’s wonderful news, Essjay‍ !
“When the root is deep, there is no reason to fear the wind.” - Japanese saying