A cautionary tale about doctors.

[220swifty]

In 2014, my father began treatment for sarcoidosis. A rarely fatal, and often treatable disease of the lung. He underwent steroid therapy (prednisone) for over a year, and the only real, tangible result we saw was a deterioration in his morale, sense of humour and quality of life. The thoracic specialist was convinced she saw sarcoidosis, and insisted that upping his prednisone dosage would beat it back. It didn't.

In November, Dad contracted what appeared to be pneumonia. He was prescribed the typical antibiotic, and told to run its course. If no improvement, check into emergency.

On December 16, my mother took my father to emergency, where they took chest X-rays. On the afternoon of December 17, he was informed he had a fairly developed tumour on his lung. Over the following week, CT scans, MRIs and a biopsy took place. Cancer was present in both lungs, his liver, lymph nodes, spine and rib cage. It had taken hold.

On Christmas Eve we were told by the doctor that we should make the most of this Christmas with him, as it would be our last.


All of this because of a misdiagnosis when it WAS caught early, and a doctor to proud to admit she was wrong.

I opted to post this, not for sympathy, but as a reminder. You know your body better than anyone, including your doctor. There is ABSOLUTELY NOTHING WRONG with asking for second or even third and fourth opinions. It could save you and your family a lot of grief.

Dad turned 60 on Monday. Way to soon to go.

[reddeerguy2015]

I'm really sorry to read that about your dad. My thoughts are with you guys.

I've run into this as well with my son, though not to the degree you did with your dad. Not even an appology from the doctor or healthcare system with a misdisagnosis or "mistake".

Its just a shame that when our healthcare system fails, the results can often be catastrophic.

Good luck man.

[norwestalta]

Not to make light of your situation but that is why they call it practicing medicine instead of performing medicine.

A friend of mine has been going to the dr for the last year for this and that. Turns out he's got liver cancer and the Dr says there's nothing that can be done. I would look at going other places. Md Anderson seems like a good place to start from some of the research I've done. Mexico, Thailand might be worth looking into.

[Hat in the Cat]

Great advice on standing up for your health when you know something isn't right.

So sorry that the circumstances surrounding your advice come at a personal cost to you. I hope you can make the best of what time is still available.

[lannie]

Sorry to hear that Swifty and that is very good advice. Thanks for the reminder.

[3blade]

First off, sorry for your fathers situation, that is terrible news.

I'll let you guys in on how it works. Any diagnostic imaging test (xray, CT, MRI etc) is subject to interpretation. The radiologist suggests what he/she thinks might be going on based on other cases that were confirmed, and experience.

Bones - pretty easy but stuff can be missed or get worse/more visible after the test.
Soft tissue - more difficult
Lungs - extremely difficult with a few exceptions. There should almost always be follow up testing to confirm. Blood work, bronchoscopy, biopsy, pulmonary function tests, sputum sample, enhanced CT, VQ scan...I would rarely accept a single source imaging diagnosis of any lung disease. Pneumothorax or pleural effusion would be the exceptions, there's probably a few more but it's late.

All that being said it may or may not have made any difference to the timeline...if it looked like sarcoidosis it was bilateral and somewhat extensive on the original X-ray/ct. Obviously it would have an impact on other considerations. Not in any way justifying what happened. Just passing on info so it happens less frequently in the future. Our medical system is the best in the world but far from perfect.

Thoughts and prayers sent your way swifty.

[Natepd]

I have been there once as well, although not as bad as your family. I would get stomach pains some night went to doctor and he told me it was heart burn, after 3 years and countless visits of me saying it's not heart burn and the doc not listen to me. A different doc looked me over and after test said I had gulblater stones. Got it removed a few days later because the doc said it was a severe case by now and good ever since. Sorry about your dad.

[HunterDave]

Sorry to hear about this, Swifty, and I certainly understand your anger and frustration about this. Your story sounds very similar to what happened with my Dad. He kept telling his Doctor that there was something wrong but they couldn't find anything. By the time that they had a diagnosis the cancer had gone through him. He was 64. Try to make the best of the time that you have left with your Dad.

[Atex]

I feel your pain...we were given the run around by the local heath care with my stepsons situation a few years ago. Long story short, we ended up in Mexico city for treatment, a ten hour brain surgery what saved his life... Kinda lost my trust back then...

[IR_mike]

Very sorry to hear Swifty.

As above not as serious as your dads situation but in 2009 broke the bottom half of my right shoulder socket and took it easy for 2 months as suggested by original doctor in Regina.

Re broke it in Aug 2010 at home, Nov 2011 here again at work, and finally in Feb 2012 at work in Fort Mac.

The same doctor in Bonnyville twice and a different one in the Mac refused to take X rays as they claimed that me being able to move my arm meant that it was not broken and figured I had just torn a muscle.

I had driven myself across Regina to the hospital the first time I broke it which was confirmed by X ray.

Had a bone graft done in june 2012 as the surgeon said the socket was way to damaged from the multiple re brakes to repair.

Sure would have been nice not to have to have worked for nearly 3 years with a broken shoulder.

[rosh]

So sorry to hear this and wish for the best to your family! I feel you as we are going through something that is a long your line as into have plugged ears to our problem. My wife has had issues going on since June, all the test come back fine, so there is nothing wrong!! Our dr won't help her out at all, she has to ask for referrals and he will either do it or say no. She's been to other dr that say they don't want to step on toes. I've watched my wife go down hill daily and now she doesn't even want to get out of bed as its to painful and uncomfortable. Now my kids show signs of what my wife started at, it's eating us alive. I'm trying to hold it together as I feel like my wife's life is slipping away. Any ways I have no faith in our medical system. Not saying ever dr is bad but we have yet to see one that is wanting to help or try stuff. It's unknown I understand but doesn't mean they should turn heads to us! Was not meant to derail, it just caught me and this stuff burns my... I hope for the best to you and your family, enjoy your time!!

[Zip]

Sorry to hear this Swifty...give your dad a hug from me, I am still battling some serious stuff that happened to me during my cancer treatments..doctors didn't listen to me about a pain that was very persistent and just wouldn't go away..well now my health has taken a complete nosedive..I'm not mad at my doctors...after all they are humans doing very difficult jobs under a very unfunded system!
Sometimes our system fails us...never fair but it's all we got!
So sorry your family has to go through this Swifty.
Prayers for your father from me.
Zip

[JD848]

Very sorry to hear,my prayers go out to your dad and your whole family.

[elkdump]

I believe the number/stats for misdiagnosis buy Doctors in Canada is about 80,000 times a year, either leading to disabling injury or death ,

My best wishes for you and your family .

[CaberTosser]

Sorry to hear of your Dads predicament Swifty. I do agree with the spirit of your thread though, as Dr's do get things wrong on occasion, in big, medium and small ways. My 92 year old WWII veteran great uncle told me of how a Dr 'ruined him' by yanking out a catheter that was in there much deeper than the Dr realized. I can't say I think his anger is misplaced. I had a Dr render a diagnosis on me about a decade back where he gave me a prescription that wound up killing off the natural counterbalancing organisms to what was making me sick, so his action made me much more sick. There was actually a risk of organ damage from his having done so, I went to another Dr and got a really simple prescription and mended up nicely, though I do wonder what long term effects might linger from that error of his

[omega50]

A doctors skill is sadly improved by making mistakes and learning from them (hopefully)
I think that sometimes people don't stand up to doctors and are relieved to hear that the issue is minor when in fact it is much more serious. So they drop it trusting the "experts"

In our house we seldom go to the doctor alone- A advocate is needed that can be tenacious like a dog on a bone asking relevant questions and making sure that the patient is giving great information in a direct succinct manner keying in on the most salient points to give the doctors the highest likelihood of a correct diagnosis. Especially with an aging parent like my MIL who just wants to get the HE double hockey sticks out of there. She is always running for the door.

I know that my doctor sometimes wishes the internet was never invented because so many patients self diagnose and would have her chasing false leads.

[Scott h]

"I know that my doctor sometimes wishes the internet was never invented because so many patients self diagnose and would have her chasing false leads"
So true. Since the web has been around that old saying about "a little knowledge being a dangerous thing" has never been truer.
To the OP, I'm very sorry to hear about your dad.......

[Sooner]

That's tough Swifty. My aunt had the same thing, miss diagnosis, same sad ending when all along the twit doc kept saying it was side effects from other medicine she was on. In the end, a un detected, 30 cm tumor was causing the bloated guts and stomach pain. When you say some doc's are too proud to admit, you nailed it on the head. Would have took one scan 2 yrs earlier when she first complained, would have caught it. Small town BC, big hospital 4 hrs away. Who wouldn't make that drive to check it out. Sucks, hoping there is a good outcome for your pops.

[Newellknik]

Take some comfort in knowing that you are not alone .
Listing the litany of such horror stories I have experienced
With familly and friends would be useless at this time .
You are absolutely correct, you must be pro active ,ask
Questions get second , third opinions . Go right from your GP
To the best specialist there is . My own wife ,40 years a Health
Care Professional went through one of biggest Physician horror
Stories I have ever heard about . Our unwillingness to take no
For an answer and get many diagnosis from many specialists
Is why she is still with us.
Our best wishes and prayers are with you .

[Grizzly Adams]

Doctors aren't perfect and they can only work with information supplied and tests the public health care is willing to pay for. Some of them still suffer from the God syndrome and think they know better than anyone. Lot of ands, ifs and buts along the way. Best defense is inform yourself . Wife worked in a hospital and could tell some horror stories.

Grizz

[220swifty]

Unfortunately, this seems to be a pretty clear cut case of ego. After receiving the official diagnosis, the internist sat down with us and read/explained many notes that were on Dad's file from the beginning of this fiasco. This was also her first time reading these notes, and her confusion and disgust with the negligence of her colleague was quite evident. In fact, most of the doctors who have come in on this since the proper diagnosis are flabbergasted that cancer was never really tested for until the biopsy he had on his liver last month (after which he suggested I do my best to NOT liver shoot game animals )

[nekred]

Man that really sucks, I had a knee injury years ago and the quack I went to told me it was just a minor sprain and a bit of time and physio and I would be back to normal, I asked for a reference to a specialist and he would not do it. I said I had previous knee injury on that ikne and I thought I needed to see a specialist, has aid no...

three months of physio still lots of pain, quack still would not send me to specialist, I told him I needed a referral or else....I would be contacting a health services rep, I also let him know I had contacted a specialist and he was awaiting the referral...

3 months later I see a specialist, he grabs my knee, I just about went through roof and may have soiled the bed a wee bit... and specialist says "What took you so long to come see me?".... I told him and he wrote a scathing letter to that other doctor.... Knee surgery required and afterwards 100% now.... That specialist is now working at the mayo clinic as head of orthopedics.... I stayed in touch as he is a hunter, Great guy... but I said what if it was life threatening....

now I hear this and see that incompetence is still in play in the medical field.

I have an awesome doctor now, when I went to see him I asked him if he graduated in top of his class or the bottom... He said WTF does it matter... I graduated didn't I... I said well there is a difference in the mechanic that gets top marks in school and the one who gets bottom marks.... He said never mind that go look at the mechanic that does the best job.... He said that he would treat me well and look after my health... and he is awesome...


Today's era of fast food drive thru health care is horrible....

[Grizzly Adams]

Originally Posted by 220swifty

Unfortunately, this seems to be a pretty clear cut case of ego. After receiving the official diagnosis, the internist sat down with us and read/explained many notes that were on Dad's file from the beginning of this fiasco. This was also her first time reading these notes, and her confusion and disgust with the negligence of her colleague was quite evident. In fact, most of the doctors who have come in on this since the proper diagnosis are flabbergasted that cancer was never really tested for until the biopsy he had on his liver last month (after which he suggested I do my best to NOT liver shoot game animals )

Just take this to court and see how quickly opinions change, Doctors are very reluctant to point fingers at each other, might be their turn next time.

Grizz

[roper1]

Very difficult news, Swifty. Seems your Dad's case is more common than we wish. Enjoy every moment that you can. All the best.

[220swifty]

Originally Posted by roper1

Very difficult news, Swifty. Seems your Dad's case is more common than we wish. Enjoy every moment that you can. All the best.

Thanks. It sure would have been nice to know a year or more ago that we were on this road, but we didn't. Making the most of it is all I have left.

[rem338win]

Sorry buddy. Unfortunately this became commonplace in my sphere of friends and family and the system has a distinct sense of egos and fanaticism. I wish the best for your father.

[Gammaboy]

I know your dad Swifty, I worked for and alongside him over the years. I talked with him in the spring and he said he was sick with lung issues but the doctor told him it definately wasn't cancer.
Its a crappy thing to happen to a great guy and while nobody knows if an early diagnosis would have changed the end result it would have let him (and his family) prepare better.
You guys had a great party for him and it was good to see him one last time.

[HighlandHeart]

Sorry to hear about the way things went down 220Swifty. Too many people with stories like yours. My mother would have died last year from a virus attacking her heart if my wife hadn't have phoned the doctor in the hospital and convinced him to send her to a bigger hospital.

While there are plenty of great nurses and some great doctors, I believe that more doctors are like the ones we dealt with than not. They will literally make decisions about a patient's tests, diagnosis and treatment based on their personal emotions and bias about a patient's lifestyle, socio-economic status (if you are not well off enough to sue them they worry less about being negligent), their ego keeping them from listening and whether or not they feel like doing their job on that day. I have heard stories about doctors from doctors and nurses that would make your blood boil.

Never assume that a doctor is concerned and caring about your well being. Most are concerned and caring about getting you out of their office in less than the 10 minute meeting you should have with them so they can make more money. Most are paid by the number of clients, I mean patients.

Ask your doctor questions, get a second opinion on anything they are dismissive about, make sure you call your doctor back if you don't hear from them about test results and if they get condescending, unprofessional or rude, ask their receptionist for the address to send a complaint letter to, if they pretend like they don't know, tell them your cousin works for CBC and you will be calling them instead.

[wags]

Sad news. My thoughts are with you Swifty.

[nekred]

220Swifty, I am glad you took the time to post, It is such a tragedy, especially as prednisone which is a steroid may have even sped up the growth of cancer...

It seems in this case there was a misdiagnosis because the doctor did not consult with specialist or another colleague. To me if I was a general doctor and saw something involving the lungs to cover my own chance of error I would refer to a lung specialist for a second opinion.

Too many medical people get a God complex and would never listen to a mere mortal.

Another case in point, my wife suffered a recent snowmobile accident and after the accident she did not want to go to hospital so using my first aid training and knowledge from suffering broken bones I checked her leg over and everything seemed to be in place no breaks or other indications of anything more than a bruise. Finally I take her in the next morning.... then they ask why she was not in earlier, (she did not want to go) put her in a cervical collar (just in case) do a CT scan, X-rays, the whole nine yards which is great and the gave her crutches and discharged her, I asked about a prescription for antibiotics or pain meds and they said she did not need them. I said there was an open wound on her shin, what if it gets infected...

It does not get better now a week later she goes in... it is infected and she gets antibiotics... now!.... They were so worried about covering their but with a neck injury when there was no signs of it.... yet no antibiotics....

It is becoming a crazy world in the medical profession.... and they will not listen to us mere mortals....

Would be better off going to a vet.....