What is wrong with doctors in Canada?

[The Mad Bladder]

I started having reoccurring bladder infections last year, but it wasn’t until this January that I noticed blood in my urine. My doctor put me on antibiotics, but after the 3rd infection, I finally had to ask to be sent to a urologist. If I hadn’t asked, I would not have been referred at all. So, 2 months later I finally get to see the urologist, who books me for an ultrasound and a scope (not sure of the right name). It took 2 months to get the ultrasound and almost 3 months to get the scope. During the scope, he showed me all the polyps in my bladder and asked twice if I had had an ultrasound done! I said yes, 3 weeks ago. He obviously had not look at it, because if he had, he would have known that I have an 8.3 x 3.3CM tumour! He then put me on an urgent referral list to a cancer specialist. My “urgent referral” in at the end of September!

I was later talking to my family doctor, and he had no idea about the tumour because he didn’t bother to look at the results either! That unopened report sat in his inbox for a month! I also had to request that I have complete blood work done seeing as how I was having very serious problems. Again, if I hadn’t asked, it would not have happened. In talking to the cancer specialist office yesterday, they asked me if I had any recent blood work done! So, once again, my doctor did not forward this report either! In doing my own research, I asked if having a CT Scan would be helpful to help speed along my treatment once I finally get into the specialist. I said I would go to the US to have it done and pay for it myself. After a pause, she asked why wouldn’t I have it done in Canada? Seriously? I said because there’s no way that one could be arranged here before my appointment at the end of September because it takes forever to get anything done in Canada!

Well, apparently they are going to arrange for me to have one before the end of September, but I’m still waiting for that appointment.
The whole process has been very stressful, and if I didn’t take matters into my own hands, I would still be where I was back in January. I have a good mine to lodge a complaint against my family doctor, who I have known for 30 years.

Well, that’s the end of my rant! It’s going to be a long 5 weeks waiting for my “urgent referral”!

[cheryl9]

Hello Mad Bladder

Don’t blame you for being so upset. You probably fell victim to having the fifth most common cancer that most general practitioner doctors know nothing about. Unfortunately, in Ontario, the government does not track non-invasive bladder cancers (the most common type) statistics and that just makes the problem worse in Ontario.

I suggest you private message Jack Moon for more/better info on doctors that are very familiar with bladder cancer. Sounds like you need to be connected with the right doctors more than anything.

I was misdiagnosed with infections for two years before a student doctor in the emergency room twigged on the thought that there must be something else going on. After three surgeries, two fulgurations and 30 BCG treatments, I have been cancer free two years and 47 days. Yes, you start counting those milestones!

When researching bladder cancer, stay away from the sites one would thing to go to such as Canadian/American Cancer Society and Mayo clinic. They will scare the pants off you. This site is way more realistic and has lots of good information.

In the meantime: take a deep breath or two or three or four or however many it takes; hug those you love; cry as needed; spend time with those that are important to you; then find something to laugh about. Then you will start you journey of healing.

Also stay away from swinging from the rafters. Takes way too much time and energy and only results in bumps and bruises from banging your head on the rafters.

Take care
Cheryl

[The Mad Bladder]

Thanks Cheryl! I’m pretty new to all of this. What are fulgurations & BCG treatments?

[Jack Moon]

Hi Mad Bladder

What has happened to you so far is not normal. This should never happen to a patient in this country. If you would like some help just private message me and I will call you.
All the best,
Jack

[KIOWA]

That’s not just misdiagnosis. It’s also failure to diagnos. I think you need to get new doctors who have graduated from first grade. That should never never have happened to you. You really should be angry about this. I wish you well.

[marysue]

Hi Mad:

Welcome to Bladder Cancer Canada and sorry to read what you have been through. As already mentioned no one should have had to go through all that stress and nonsense. I don’t blame you in the least for being so furious.

Now that being said, I strongly recommend that you take Jack up on his offer of help and get connected with some different and better doctors that are willing to act faster and take your situation more seriously.

There is nothing more stressful than knowing that you have a serious health situation and can’t get anything done about it.

To answer for Cheryl and hope that she doesn’t mind…fulgeration is the cauterizing of the tumours in the bladder to destroy them. BCG or Bacillus Callumette Guerin is an attenuated TB vaccine that is used post tumour removal to help prevent recurrence by stimulating your immune system. This drug is administered via a catheter and a patient holds it for about two hours and voids it out. Treatment schedules are usually a set of 6 (once a week for 6 weeks) and are often followed up with sets of 3 (once a week for three weeks) for up to three years depending on the diagnosis.

I have had 2 tumour removal surgeries – what is “affectionately” called a TURBT (trans urethral resection of bladder tumour) – medicalese for removing the tumours from your bladder via a scope up the urethra and 21 BCG treatments.

You won’t know what your “next step” is (be that BCG treatments or something different) until the tumours have been surgically removed and sent to pathology for a pathologist to diagnosis the stage and grade of the cancer you have. This is the most crucial step for any bladder cancer patient and this surgery is probably what they are going to book you for. As mentioned connect with Jack to see if there is any way you can get referred elsewhere faster to get this done.

I also suggest that you download the BCC patient bladder cancer booklets to get a grasp of an overview of bladder cancer and the terminology. The booklets are an easy read meant for the everyday person not doctors.

Best wishes and I truly hope that things straighten out quickly for you. Please keep in touch and let us know how it goes and don’t hesitate to ask questions. This will be a big new learning curve for you and one that we here are happy to help you with. (((((HUGS))))

[GerryW]

Hi, Mad
You are definitely in the right place now. BCC was created by patients like us who had no place to turn for peer support in Canada. Please take up Jack Moon’s offer to message.
In my case, my symptom was frequent, urgent need to urinate but it was passed off as just a normally enlarged prostate for my age until a small lump was found on my prostate during an annual exam. Fortunately, my GP sent me to a urologist for a second opinion and one thing led to another in fairly quick order.
It is upsetting to me when I hear of the oversights and delays that you referred to. One of the main reasons that I joined BCC was to raise awareness of BC among friends, local public and caregivers to help avoid the experiences you encountered. I am glad that you have found our support community.

Gerry

Kingston and the 1000 Islands

[Saldcorn]

I think my previous GP went into medicine because he was sick of being bullied. Now, he does it to his patients. He’s sarcastic and dismissive. He refers some people to specialists without their even asking. Me? He didn’t think an ear infection was worth worrying about, so just kept renewing scrips for antibiotics. Long story short… tinnitus for life. I’ve forgotten the experience of silence. This with a few other ‘Too bad, so sad… just put up and shut up’ reactions had me leave his practice and start seeing someone in Toronto. No GPs up here even had an open waiting list at that time. A 2 1/2 hour drive.

Fortunately, my first indication of BC was gross hematuria – pretty hard to ignore – so I went to the ER at our local hospital. The downside of not having a doctor here. But, when they realised it wasn’t an infection, they arranged a CT scan, and after that things moved fairly quickly until I ran into summer vacation times for first the urologist up here, and then the surgeon in the city.
The waiting and the not even knowing when or how I would hear from these people had me absolutely furious and pretty much on the edge of a breakdown. I don’t blame you at all for how you’re feeling. But, contact Jack Moon. He’s wonderful. And continue to stay in touch with this site. It absolutely saved my sanity on several occasions. I hope you can feel better about everything soon. Use BCC, as I did, to help yourself fell more grounded.
Sending a whole lot of moral support your way,
Sue

[cheryl9]

Hello everyone

Have to put a plug in for my province. Especially now that Brad Wall is retiring. There are two urology offices in Saskatchewan. One in Regina and one in Saskatoon. I am a patient of the Saskatoon office. There are around ten doctors in that office. There are no issues with vacation time and waiting times are short. If something needs to be done quickly you are moved to a doctor that is available and there is always a doctor on call. They rotate and each doctor takes a turn being on call for a week. No turf wars between the doctors. After my last surgery, done by a different doctor, when she phoned with the results I said things didn’t feel right and it felt like the cancer was still there, she had me in again in five days. Sure enough, there was another tumor (low grade) that was missed. One of the risks of not having the surgery done by the doctor that did the scope but with the first tumor being high grade I was glad to have it gone. That became my final round with cancer. Creeps me out to think what could have happened if things had waited until my next checkup.

Also, the doctor did not have to believe me when I said it felt like the cancer was still there. She did and that is also worth its weight in gold.

For new people reading this, from what I have seen, most people don’t “feel” cancer in the bladder. Myself, I could pretty much tell and this was spurred on by the cluster of tumors that almost killed me and the cramps they fired off. Taught me to be cognizant of the sensations going on in my abdomen. Not all those sensations are gas moving through!

Also, all my medical care has been “free”. No issues with private health insurance either. Government, through my taxes, has paid for everything. Cannot imagine what it would be like to have a serious health issue and have to worry about how to pay for it or if health insurance will cover it all. This is one of the features I love about Saskatchewan. Keeps me tied here, though. Our plans were to move to Italy when I retired. Those have been nixed by the bladder cancer.

Take care
Cheryl

[The Mad Bladder]

Thanks everyone for your help and support. I was supposed to see the urology oncologist on Sept. 21, but earlier this week I received a letter saying that my appointment had been changed to Oct. 3rd! Another 2 weeks of sleepless nights! So, I contact the fine folks at BCC like many of you suggested, and they were able to act on my behalf to get my appointment moved up closer!

I spoke to my urologist’s secretary yesterday and told her that BCC had acted on my behalf to get my appointment moved up, and she seemed very indifferent. I suggested to her that it would be very beneficial to newly diagnosed patients to be given the BCC website information as there’s so much good information on it. Again, she was very indifferent and pretty much cut me off! I also had been waiting for her office to set me up with a CT Scan, and it just wasn’t happening. So, I took matters into my own hands. I had been having some stomach crapping and nausea for a week, nothing too terribly serious, but I said screw it! I went to emergency, told them I had abdominal pain and my urine was very bloody (which it is) and they gave me a CT Scan! And that’s how you get that done! BAM!

[Saldcorn]

Good for you! My urologist is great ( as I remember), but I think his secretary has the same personality disorder as your uro’s secretary. Some are so great and some… well. Enuff said.
In any case, I’m glad that you’re on the way to getting some answers. Keep us posted and vent here when needed!
Good thoughts,
Sue

[marysue]

Hi Mad:

I’m glad that you are finally getting somewhere. It pays to learn to be your own advocate. You have the advantage that some of us didn’t have….BCC to come to your aide and I’m glad that they did.

As for the office secretaries – you get some good ones and some that couldn’t care less as you have experienced. I’ve had both and I know for a fact that having good, personable staff makes all the difference. If you have an office person that really listens and does their best to help, you feel like you are being cared for but if you have the experience that you had, yep, you feel like no one is listening and it really adds to your stress levels.

I remember when I was told by my first uro at my first cysto when we saw the tumours on the screen and he said that I’d have to come back for surgery to have them removed. I asked approximately how long the wait would be and he gave an indifferent shrug saying “Oh, the usual time.” When I asked what that was – he told me that the schedule was full for the summer (aka also meaning that people were on holiday) and I would get done “sometime” in the fall. It was early July then and that could mean a 3-5 month wait. I had a real WTF? moment – thinking, this is most likely cancer growing inside me and all you can do is shrug and not even be able to give me a guess? Not knowing how serious my situation was I was thinking that I could die before I made it to surgery. I did kick up a bit of a stink and they managed to get me in for the beginning of September making it an 8 week wait. This doctor’s secretary was also indifferent and I had to chase her for appointment times for everything. This created a lot of unnecessary stress. This was in 2008 before BCC.

My new guy is just the opposite and he has a great office gal too. I know that if I have a problem I will be listened to and it will get taken care of. Stress level? Way lower. They are great supporters of BCC as well.

Good luck going forward. Please keep in touch and let us know how it goes. (((((HUGS)))))

[Author]

Posts