Victims of the Canadian Healthcare system

My HMO here in the states does not do breast MRIs except in really rare cases. They do not do transvaginal ultrasounds routinely on women taking tamoxifen. They do not do any rountine screening for mets. Following treatment one has yearly mammograms and sees the oncologist/surgeon every 3 months for 2 years then every 4 months for 3 years then every 6 months to a year depending on patient's needs forever. Any new symptoms or weird blood test results are investigated as needed.

Why don't they do these additional screenings you believe are "standard of care"? Because they have not been shown to provide important information absent patient symptoms. All those things have high false positive rates which means more unnecessary tests which have their own costs. The things they might detect in the absence of symptoms have not been shown to have a better outcome if they are detected sooner. It's a philosophy of medicine. I'm comfortable with it, other want lots of scans.

Funny, I WANT an ultrasound NOT a mammo on my mast scars and they insist on doing a mammo first!!! Finally this year was able to go right to US. I have had to ask for the tests I wanted, that I learned I needed from this forum as I wasn't assigned to an onc!!! My surgeon had emergency heart surgery of his own and dropped the ball on me. I'm not angry with him. It's up to me to get what I need from our system and I got it on my own.

Mum, how did they decide you're high risk for mets? Because of the nodes? I had intramammary nodes that were positive and, as you know, they normally can't get at them as they are under ribs. I'm just waiting for the mets to follow...sigh.

Huh, I didn't know that, and here I've known you for three years!!!

Hi Ladies,

I know it is scary when we are not getting regular tests done. I agree with Revkat. Sorry, to say but if they were to do regular scans to do monitoring WITHOUT any symptoms of mets it would be very costly. Truely, the outcome is the same once mets are discovered. In other words, they can do a CT on my brain tomorrow and I have NO symptoms and find mets and this will not change the fact that I am no longer curable.... I realize that sounds harsh to put it in those terms but that is my belief as to why we are not given rountine tests ( other than mammos every year) if no symptoms are apparent...

Tricks of the trade:

1) Don't like how long your appointment/test is ask to be put on a waiting list. Usually you can get bumped up and call every once in a while to see if you can get "slipped " in.

2) If at all possible book your appointments face to face. I find when their is face to the name you get better service.

3) Don't feel you are getting a test you need from your Dr. then go to the ER and let them know your symptoms. I went to the Urgent Care Centre in London on Wed b/c I had dizziness, headache and nausea. They knew my BC history ( it was on the computer as part of my medical history) and the Dr ordered a head CT WITHOUT me asking for it. He did a full neurological exam and I had the CT the next day to rule out mets. I happy to say it came back clean.

I just wanted to share some things that I have done in the past that have helped me... I have also had things that I was not happy with either but I feel for me it is best to focus on the things that our healthcare has done to help me be well again.

Regards,

Chalex: Aug, 2009, IDC, 7-8cm, 0/15 nodes, Grade 3 ER+/PR+ HER+

I just find Doctors trying to go strictly by the guidelines of over 40 and brushing aside any concerns, younger women have.  I was diagnosed late in life at 67,  when my daughter found a lump at 33, they blamed it on everything else and were very reluctant to send her for tests, only on her persistence and the fact it grew very fast , did the Doctor finally take action. my other daughter who is also not 40 had to really go after the Doctor to get permission for a mammogram. It was only because two other members had breast cancer, that  she finally got an appointment for a mammogram.  We are being tested for the gene, to find out if it runs in the family, hopefully , other members and granddaughters down the road wont have to fight for care.

Can only speak from my own experience but am followed up presently every six months - just switched from every three months in June - have dense breasts so US now instead of mamo - been told that "if anything seems out of place come in right away and we'll scan" by onc and PCP sees me every three months just to "keep track of me" - I am stage 3 also and live in Ontario - was previously treated in U.S. (because I was living there at time of diagnosis) - had a little problem when I returned to Canada because of miscommunication but everything is going very well now - sorry you've had so many problems.

Nanababy you won't win!!! You are spending a TON of energy into proving something that won't make a difference in the big picture. I KNOW how you feel as I had a doc under-treat me for 11 years for Fibromyalgia. He didn't want to tell me I had it, didn't want me to "live" it. But instead I thought I was going out of my mind and I ruined my liver on Tylenols!!! I went from him prescribing zero to a real doctor providing me with synthetic morphine with Oxycodone for break-through pain. A bit different, eh??????

My point is, you have bigger fights in your life than this one, surely. In Canada, you will not win. There is just nothing to prove! You are BOTH right. Please don't be angry at me for saying all this, I truly feel your anger and frustration, but I believe you could turn that energy into something positive instead of dragging it around with you for more years to come!

My Dh was furious with my Family Dr for not finding  my breastcancer  durring my yearly physical only 4 months before my DX.I had 3 tumors and one already in the nodes so they had to be there when I had my physical which included a mamogram.It took me quite a while to calm him down and he still insists that this doctor did not do a proper physical on me.He is propbably right but the doctor must of realized this after as well. I truely believe that everything happens for a reason.

I'm from Ontario and I don't have a family doctor; I haven't been able to find someone in my city who will accept new patients. Relying on walk in clinics for my health care needs is not ideal.

Nanababy,

Barbe has made good suggestions above. Get your thoughts in order and write down on paper the history of your issues and organize it with any reports, records etc. that you have. Once you see it on paper yourself it will help you decide where you want to go with pursuing your complaint. It will also help you release some steam.

If you do decide that your primary aim is to get the doctor better educated, rather than pursuing a lawsuit consider using the written material you've organized to write a letter of complaint to the CPSO (College of Physicians and Surgeons of Ontario). Try to keep the letter very factual and unemotional. The matter will be referred to their Complaints Committee who will take it from there. Just be aware that nothing will happen in a hurry, as is typical of any bureaucracy.

I'm finding this conversation very interesting. Having spent most of my life in Ontario and am now in Nova Scotia, I find the health care here to be outstanding. My daughter, last year at age 27 found a lump and was taken care of within weeks with a mammo, US and biopsy and diagnosed with BC. She had lumpectomy, then chemo with planned radiation. But, since the hospitals in Halifax are teaching hospitals a lot of  research is available. Her team recommended a BX instead of radiation because of the long-term effects radiation can have (in 20 years or so). It's very difficult to arrange a mastectomy and reconstruction during the same operation, because of co-ordination of doctors, but they pulled out all the stops and she had it. Her team of doctors have been. They pushed for genetic testing (BRCA1) and now want all family members tested - to find out who the gene came from - in order to keep a close watch on everyone (including the men).  Her young age pushed her to the front of the line for reconstruction, but in talking with other BC patients the quality and speed of care is equal. I have found the health care here in Nova Scotia to be top notch.

Very interesting thread, this. My GP had my baseline mammo scheduled for me in my early thirties because my mother had bc. She's been vigilant and if anything overly conservative when it comes to specialist referrals for paps too. I've been in the screening program at Women's College for years now and they are terrific, radiologist found my DCIS this past spring. Yes the system is busy that is to be expected but at least we can afford our health care.

I have a question for everyone - I see some mentions here of reconstruction and I've wondered about whether our provincial health insurance covers this. A friend who dealt with bc about 7 years ago told me that OHIP did not cover reconstruction if you had to have a mastectomy. That just seems wrong to me. Anyone have any experience with this?

Nanababy - I have lived in Montreal, Ontario, Calgary in Canada and then many locations in the U.S. - in Montreal (where I lived till I was 25) my PCP checked my breasts every year, then my gyno, then in Calgary PCP and Gyno and now in Ontario my onc every six months now and US because I have dense breasts so that covers my medical coverage from 13 years old to 65 (going to be 66 this month) I don't know what bad experiences you've had but all my life I've apparently had very good doctors in two countries - I agree that the walk-in clinic may not be where you want to get medical care - I moved to Burlington, Ontario two years ago and within 48 hours had a PCP she was just starting out and joining an existing practice - a friend of mine saw the announcement in a local paper and called me and I saw her the next week - like I said I guess I'm just lucky - I also don't like the title of this thread.