Victims of the Canadian Healthcare system
It seems to me like the government doesn't encourage young women under 40 to get regular clinical breast exams and limits breast screening to women 40 and up (or 50+ in some provinces) to save money! That it's cheaper to sacrifice a few young people to cancer than to pay for everyone to get regularly examined/screened...
And I do understand the breast density issue with mammograms, but a trained doctor/nurse needs to regularly examine their patients breasts! They can't rely on their patients to do self exams.
It should be a standard that a physical breast exam be done at least as often as a pap test!
Who agrees/disagrees with me?
Comments
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I'm not in Canada, but I do have a question. I've had clinical breast exams with every annual pap smear whereever I've lived in the U.S. Is that not the practice in Canada?
LisaAlissa
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I live in Canada (Nova Scotia nad then Alberta) and I have always had breast exams with my annual paps. I'm 50 and was sent for my first mammo at 28 due to a lump being felt at my annual. My daughter who is 25 gets breast exam at every annual too. She has practiced BSE monthly even before I was diagnosed.
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Nanna -- I have always had a clinical breast exam at every yearly physical, or by my gynecologist along with a pap smear, since the age of 20. I had my first mammo at 37 due to family history. I live in Ontario.
So I guess I disagree with you! I was reading over your earlier posts and noted that you were undiagnosed for an awfully long time. We are at the mercy of our physicians, some of whom STILL think BC doesn't happen to young women. Unfortunately, that is just not so, and I'm so sorry that your doctor wasn't listening to you. He never learned the "art" of medicine, it seems.
Anyhow, I do believe that a clinical breast exam is on the checklist of every doctor doing a yearly physical. If there are valid reasons (such as a suspicious lump or thickening, nipple discharge or deformity, or simply family history) there is no reason a screening mammo or ultrasound can't be ordered.
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"Who agrees/disagrees with me?" Disagree!
There are government treatment guidelines, but it's doctors who are in charge of the patient and they make the decision. I don't know if there are guidelines about breast screening - although frankly it seems really odd to me that any doctor would not do a breast exam as part of a general physical on a woman of any age. From my own experience, as someone who had my first fibroadenoma at the age of 16, I can tell you that every doctor I have ever seen has done a breast screening on me, and I was getting mammos well before I was 40.
The advantage of the Canadian system is that doctors get to decide, and they don't need to fill out any paperwork or get any approvals. Even if you don't fit within the guidelines, if your doctor thinks that a particular test or procedure is necessary, he/she can order it. Yes, there are some doctors who prefer to always stay within the guidelines but I've never encountered any doctor who's had a problem scheduling me for whatever test, procedure or referral I needed.
Unfortunately there are incompetent doctors everything. And everywhere there are doctors who don't listen to their patients and who think that a young woman can't possibly have breast cancer. I'm so sorry that you had one of those doctors, but that can happen anywhere - it's something that we read about on this board all too often and certainly not just in Canada.
LisaAlissa, to your question, yes, that is the practice in Canada for all women that I know.
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I can't remember how old I was when I received my first mammo but I know I was in my early 40's. I vaguely recall him saying that it was important to get a baseline mammogram at a young age and then depending what was found would dictate how often I would receive one. I was also part of the Ontario Breast Screening Program but they kick you out of the program if you get breast cancer.
I still remember the initial shock of being squeezed into a locking vicegrip and asking them if there was a fire, would they remember to come in and release me!?
I was born and raised in Ontario and my experience with our healthcare has been nothing short of excellent. I feel very fortunate to live here. If you have a good GP who doesn't hesitate to refer you to a specialist, the wheels of medicine can roll very quickly.
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PLJ, I'm sorry that you've had a such bad experiences. Everything you've described deals with the competency of the individuals involved; none of it is specific to the Canadian healthcare system.
Reading this board, every single day we see people who get the medical run-around, who are misdiagnosed, who are refused referrals or tests, etc.. Most of those examples don't come from Canada. Unfortunately not all doctors and techs and pathologists are top performers. That's why "Get a second opinion!" (or third or fourth) is always one of the loudest cries on this board. The other loud cry is "Be your own advocate!" Those are good rules to follow, whatever country you live in.
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Disagree!!
I had my first mammo 30 YEARS ago. It was horrid, but necessary as I had a huge tumour on my left breast. Had to be surgically removed as it was affecting the use of my left arm. That was the first of 3 biopsies until I was diagnosed 3 years ago. So, no, I disagree. I had to push to get it looked at, but I truly believe we have to empower ourselves with some knowledge to know if something has to be re-addressed. If you just follow blindly you will only be one sheep in a herd. It sounds like you had to push yourselve Nanababy, so you know what I mean.
As for docs recognizing cancer on scans - I wouldn't believe it if they said it. The only way to know if it's cancer is when it's under a microscope!!! How many USA ladies have we seen even lately that were told they had cancer by the radiologist only to find out after biopsy it wasn't true! That's like a dentist pulling a tooth and then looking at it to see if somethings wrong. Procedures are there for a reason.
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Disagree. My GP has routinely done clinical breast exams at every annual physical since I was in my 20s. If a GP or gyno isn't doing that, it's a professional performance issue, not a matter of funding in the Canadian health care system. And I would insist that it be done.
By and large, ours is an evidence-based system; mammos are covered in those age groups where they have proved beneficial. Nothing to stop a GP from referring a high risk patient for one, if they wish, or to establish a baseline. Just this week at my annual physical, my GP asked me if I wanted to be referred for an abdominal U/S, just to rule out possible liver mets - the early detection of which I had wondered aloud about - and I have no symptoms. This tells me there is plenty of flexibility in our system for competent doctors to care for their patients... and no for-profit insurance companies to answer to. That to me is a good thing.
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PLJ, I am surprised that you got an Oncotype test!!! I thought Canadians were waiting WAY too long (9 months or so) for the testing and it was too far past the point for the result to be effective (chemo/no chemo). You are the first one I know to have been tested.
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Disagree too. If I had wanted a mammogram earlier, I only would have had to ask my doctor to arrange it. If I didn't have a family doctor (as was the case for a little while) I could have gone to a walk in clinic to ask the doctor there to arrange it.
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I practically had to do backflips for the Oncotype, barbe1958. In fact, I almost had to drive my sample 2 hours so that an experienced path could properly cut it. Fortunately, my favourite path came in from vacation to do this...just for me! What a sweetie! (See, I'm not all down on docs or the system.)
Oncotype Dx results are back within 2 business weeks of Genomic receiving the sample. MO who ordered it said testing had been coming back 5-7 business days after its arrival. All they have to do is email the results.
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PLJ, no I was certainly not inferring that you did not advocate for yourself. What I was saying was that on this board we always remind all the women who come here - whatever country they are from - that they need to get second opinions and they need to advocate for themselves. That's because the type of experiences that you've had happen everywhere. So my point was simply that your experience, and the fact that you needed to advocate for yourself to move things along, is not unusual or unique to Canada.
It sounds as though you had a terrible experience. I'm sorry about that. My experience was very different but that in no way negates or leads me to question what you went through. The only thing that I am questioning is the blame that you are putting on the Canadian healthcare system. I think the blame is with your doctors and local facilities. I think the proof of that is the fact that so many of us have had such different experiences within the Canadian system, and the fact that others from outside Canada have had similar experiences to yours.
I don't think that the Canadian system is perfect and I agree that there is considerable room for improvement. But I also don't think that every bad experience that someone has is because of our medical system.
As for the Oncotype test, the situation with this test is a bit unique. The patent for this test is held by Genomic Health and last time I checked, they had not authorized any labs in Canada to perform the tissue sample analysis. Therefore to get an Oncotype test done, a doctor must deal with Genomic Health in the U.S. and go through a rather onerous, and expensive, process. Unlike doctors in the U.S. who have staff to handle administration (because of all the insurance approvals required), Canadian doctors don't have much - if any - administrative staff. Managing a multi-step process is not something that Canadian doctors have the manpower to do for all their patients. So the reason that the Oncotype test is not used more widely and offered up immediately in Canada is not the fault of the Canadian healthcare system, it's the fault of Genomic Health, who have not authorized any labs in Canada to do the analysis and who've created a difficult and expensive (approx $4K per test, I believe) process. By way of comparison, the BRCA genes were patented by Myriad (although I believe they lost a 2010 court case on this) but they approved a lab in Canada to do the BRCA analysis. Only one lab, unfortunately, and that's the reason for the long waits to get results. But still, the presence of this lab in Canada provides more flexibility to Canadian doctors and has allowed the Canadian government to negotiate a price (the BRCA test is significantly cheaper for Canadians than it is for Americans).
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Following a lumpectomy without clear margins, I opted for a mast. Prior to surgery and subsequent chemo, the tests ordered for me were MUGA scan, chest X-ray, pelvic and trans-vag ultrasound, SNB, and bloodwork of course. I assumed these all fall under standard of care in Ontario, as there were no extenuating reasons for having these tests.
It would have been wonderful to have had the oncotype DX too.......
There are definitely areas within the country that are underserved, and this is largely due to a difficulty in recruiting specialists. And, as Ann Landers once said, 50% of all practicing physicians graduated in the bottom half of their class.
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I'm afraid I must disagree as well. But I am sorry that you've gone through all this, that is unacceptable. From the time I was 16, I have always had breast exams & I was sent for a mammogram when I was 32. The mammo's didn't find my tumours though.
My MO explained to me that onco type tests were routinely done in other countries due to insurance co's wanting to know who should get treatment. I've had an onco test done because I fall within the guidelines even though I had no family history. I had BC in both breasts at the same time which is within testing. Like Barbe said, I won't get my results for about 9 months, but the testing wasn't done until long after treatment & reconstruction.
Good luck.
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My onco type wasn't a rush as yours obviously was. Mine is a baseline & all of the baseline are done as a non rush. I have no treatment options awaiting my oncotype. Everyone I've spoken to that has one with no rush on them takes between 6 & 9 months.
The system may not be perfect, but I am extremely happy with my care & resulting treatment. I am out of pocket about $300 to date & this is with having to travel & live elsewhere for radiation treatment & includes all my prescription medication & total reconstruction.
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I disagree as well. I've had clinical breast exams every year with my annual physical. In my 20's I had a mammogram due to a fibroadenoma when I discovered a breast lump.
When I discovered the lump in my breast earlier this year at age 46, I was amazed by how quickly things moved. I have no complaints about our healthcare system and the care that I've received. As others have said, is it perfect? No, but nothing ever is. I also agree with mfrog...the only out of pocket expenses I've incurred so far are hospital parking fees!
As with any profession, not all doctors graduate at the top of their class in medical school. As patients, we need to speak up and ensure we get the care we deserve. -
Hi Ladies,
I work in the healthcare system. The piece of advice I can give you all is to get all your medical records and test results. That way you know exactly what your diagnosis is and if need be you can get a second opinion or do your own research.
I believe there is no such thing as a "perfect system". We can all find example of people who have been screwed by the system, things that were missed and money that could be better spent. However, I believe I had Dr's that their did best to help me fight my BC and a healthcare system that did not make me broke. Think how much money is spent on Rads and chemo per person...
True story about the good side of hard working health care worker. When I got my mammo. results it was clear I had BC. I had a big tumour. I know lots about BC b/c I work in a hospital and have lots of knowledge of cancer. The BC nurse practioners knew I was not coping well so they reviewed my mammogram again on THIER own time. The nurse called me at home OFF HOURS and then next morning a radiologist and U/S tech. came in B/F their shift to do my core biopsy. They did this b/c they wanted to get my results as fast as possible and let me begin treatment. So, yes, I know the bad stories and they do suck but keep in mind no healthcare will ever be perfect.
Chalex: Aug, 2009, IDC, 7-8cm, 0/15 nodes, Grade 3 ER+/PR+ HER+
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The Oncotype testing is too new of a process to even know if it will be effective. It is also assumed, and the numbers are based, on the fact that you WILL take Tamoxifen if you get the testing done. If your number is low, it is based on the Tamoxifen as much as any factor of your tumour. If you don't bother taking Tamoxifen, there is no point in getting tested. It simply runs too closely to the Tamoxifen use to be unbiased IMHO.
It's like saying if you smoke THIS brand of cigarettes you will get a lesser lung cancer. But we only tested it with THIS one brand of drug.
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I totally AGREE!!
I just came back from seeing my doctor, I had 8 sessions of chemo, radiation, double masectomy, ovaries, removed....I was 19 with a very STRONG family history of breast cancer, at this age I started getting fribroids, they told me that it will never turn into cancer, not to bother taking them out and not to worry about them. Thank God I didnt listen and always took them out. 2009 I had what I though it was a fibroid. when to doctor, they did ultrasound, and the radiologist had a suspecion, did mammo, mri, ultra again..my surgeon who specializes in breast cancer told me that sometimes they make a big deal about things and didnt take the lump out...2010 turns out it was cancer...but with the mentality of you are too young..im now Stage 3a...and just to top everything else...The two biopsies that i had before my treatment and during my masectomy were wrong!...I was told I was HER2 neg, and it turns out that Im actually HER2 + so now we are hoping that Herceptin will work....apperantly, not all the tissue is test. only some portions. so they totally missed the nodes that did turn they had the her2 receptor or else the cancer would be coming back...and who is the one that has to suffer is me not the doctors...Im really mad as to why isnt all the tissue being tested!! I asked doc why some tested positive and other neg " its because cancer cells are like siblings not all siblings are alike! (if this is the case why are they not testing everything!!) to save money?? because my second opinion was done privatly, he had to arrange it so the goverment would pay for the treatments! he said they might have a problem since it was done after the treatments were done!...we are talking about human lifes...however if is to spend money somewhere else where they shouldnt be that ok!...Im really really mad and in shocked that this is happening, i just hope and pray is just me, and not other women.! The system really has to get their act together!
as for screening my mom and sister have yet to be screened my moms doctor does not examine her. we have asked for mri cause she also has very dense breast, when i went for generic testing, they told her she should be getting mri, her and my sister, they were both turned out because they said that family doctors cant give the requesition only a specialist....and since they dont have anything they dont send them to specialist!
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coni, your Mom and sister have to get to a Breast Centre that specializes in high risk patients. Not just any doctor can request the scans they need. I'm sorry you weren't directed to the right places. Mount Sinai in Toronto, Women's College, Sunnybrook are all hospitals in Toronto that screen for high risk. You have to do some of the work and find the right centre for them. You can't just sit back and wait for the doctor to line up all your testing. That's what we've been saying. You MUST be your own advocate and take accountability for your own life.
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Also coni, you must have IDC and not DCIS as DCIS is ALWAYS Stage 0.
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I live in British Columbia. I had my first mammo when I was 50. After having several normal screening mammograms, I was diagnosed with breast cancer at age 60. I think that if I had been high risk, I could have started my mammos at age 40.
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BEESIE - Can you please share those government guidelines? I haven't seen any. Thanks
PLJ - I agree, bogged down, not enough funding, low accountability.
I had an order for a diagnostic mammo, and the rad tech refused me! So I got an U/S instead, and the results were for me to get a mammo. And what happened?! NOTHING! my GP wouldn't send me for a mammo!!! He said what makes you think they won't refuse you this time?! That is when I started to panic! I can't believe there isn't a better regulating body!!! Why are ignorant doctors allowed to "treat" patients like that?! Is the only option to seek legal advice?
Since my diagnosis ordeal, I have seen a bunch of talented specialists I owe my life too and now I have a new family doctor. I ditched the douchebag!!! But, the douchebag is still working!!! You know, one day that idiot called me at home from his personal cell to ask me why I changed doctors and to give me shit that he gets a penalty when he loses patients!!! WHAT NERVE! I think I'd vomit if I ever saw that idiot again!
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LINDASA - I never got a pelvic or trans-vag ultrasound to screen for mets or before starting chemo. And the specialists were almost convinced I was a stage 4 cuz of my delay and the size of my tumour (8-9cm). I only got a trans vag after all my chemo and rads were done. Because I asked for it from my new family doctor.
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Ok and since we are talking about what the standards of care are... can you please share what your doctors recommend in terms of screening for mets? I am done treatment (did more than what the "standard" is in terms of chemo). What kind of regular screening should I be asking for besides an anual mammo? They don't do ultrasound on the mastectomy side either. Just mammo.
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I've had clinical breast exams at my annual physical since I was 16. No family history here but my GP ordered at baseline mammogram when I was 45, which is what caught my cancer. In Ontario, organized mammogram screening starts at 50 but it's up to the doctor when/if they want to have patients take them in their 40s. No complaints here for me.
Sorry to hear other have had bad experience.
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