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Aaron Y

Early Diagnosis - difficulties with Doctors

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Hi, I thought I would use this forum to let off some steam.  After 47 years of great health I found myself battling illness, as yet undiagnosed.  When I went to my GP 14 months ago they suggested depression/anxiety.  I was anxious as I had suffered weight loss and experiencing fatigue.  I found the GP very dismissive and luckily I managed to get to see a private consultant.  In April I managed to get a CT scan which was clear.  However, I still felt ill.  Repeated appointments over the year to my doctors were met with prescriptions of anti-depressants.  I still felt weak and had a number of continuing symptoms that felt very much aligned to some of the paraneoplastic endocrine symptoms that can accompany SCLC.  The story continued throughout the year and recently I have undergone cognitive bahavioural therapy.  The counselling helped convince me that I have a physical problem, not pschycological.  To try and get to the bottom of this I elected to take the Early CDT Lung Blood test.  This came back positive.  The false positive stats are actually quite low, in people without symptoms a positive result is true in 1 out of 9 positive results.  As I have symptoms I feel that this puts me a bit closer to the true positive pool.  On returning to my GP (on world cancer day) he still wasn't very interested. In the UK, a CT scan requires a GP referral, I've tried every avenue for this and hit a dead end.  I spoke to our wonderful people at MacMillan and they said that they could not dismiss the positive test.  They also explained that CT scans do have a miss rate, especially for very small tumours (pea sized was their words).  Unfortunately they are not in the position to provide medical advice or tests as this sits with your doctor.  So currently I am feeling ill, suspect cancer, have a positive result on a cancer blood test (P53 autoantibodies detected) with nowhere to go.  I understand that early diagnosis is key but that your doctor also has a responsibility in this.  When I looked at some stats I was amazed at how many GPs are missing chances for early detection.  When I get to the bottom of this, I really want my Doctors to understand that they are need to be much more alert to patients.  Does anyone have any advice on how I could do this?

 

I am not the only person experiencing this at my surgery.  Here is one of the latest reviews on their website from last month:

I disagree with comments re rude receptionists, I think they may have helped save my partners life but we wont know yet. Severe and worrying symptoms requiring tests were never followed up, urine test for infection results were given by receptionist we were told nothing to report. We asked for follow up with same doctor after symptoms persisted and got much worse but saw a different doctor in spite of asking for the same one, the second one we saw couldnt have appeared more bored and patronising and kept sighing and looking back at the notes on screen, said they would send us to the hospital but couldnt say when we would be seen. Several weeks later hospital had no such request, during which time symptoms got worse, receptionist advised we have telephone consultation with doctor to request fast track, on this phone call four days later, we were told no sorry we cant fast track you. Two weeks later after becoming very concerned I telephoned the surgery and the kind two staff members I spoke to arranged for a doctor to ring me that same morning, they realised I was becoming very desperate I think, anyway a bored and angry sounding doctor gave us an appointment that same day finally a urine test was done, suddenly we qualified for fast tracking. Although doctors and hospital consultants tell patients never to believe google, both doctors blatantly googled the same pages I myself had done, right in front of us, the google search I did immediately led me to believe fast tracking was required and I became convinced my partner had bladder cancer, what happened at the hospital when we finally got that appointment? Bladder cancer.

 

How can we make GPs listen and increase their awareness?  I am all for being an advocate in your own health, but if GPs control the tests then you can only do so much.  I think having a National Health Service is a great thing, but those choosing to work in this area need to make sure they are willing to accept that they are there for the benefit of the patients.  I spent 23 years in the airforce and when I took on that role, the responsibility was made clear and taken seriously in an oath of allegiance.  Every time I worked on an aircraft I was really aware that careless work could cost lives. Maybe these are ethics that I miss?  Any suggestions from you knowledgeable people would be great.

 

Sorry for the essay, you don't have to read it all, it is a wet and windy day in the UK and I feel very tired, so just passing time away.

 

Aaron

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Aaron,

 

You sir are in a quagmire.  There may be many benefits of a national health service but choice is not among them.  I'm not from the UK and I don't have a clue how you can influence your General Practitioner to be sensitive to your concerns.  Our US medical system has many faults but we can choose doctors we are comfortable with and obtain second and even third opinions without permission of the Queen.

 

So, here are my suggestions.  I'm a retired US soldier and I've used my Army connections to gain access to doctor's opinions outside the civilian community.  The UK armed services has a medical establishment.  Might you engage that establishment for assistance?  If not performing an actual procedure, to apply influence to have your desired procedure performed.  

 

I did a quick Google search on UK commonwealth nation health systems,  Might there be an opportunity to travel to one of these countries and have a medical consultation.  Outside of the commonwealth nations, the Azores, popular island destinations, appears to have a "for pay" medical system that you might be able to use to get the type of test you desire.  The problem, however, might be getting the UK system to accept the test results.  But, at least you'd know the results.  Know, however, I'm not an expert on international medical policy and there may in fact be quite a lot of red tape using the Azores medical system that I'm not aware of, including the availability of testing technology to address your concern.

 

No need to apologize about your essay.  Lung cancer is a nightmare and at this site, we completely understand your concern and are most willing to read about it.  I just wish I had a useful answer to your very important problem.

 

Stay the course.

 

Tom

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​I am so very sorry for you about what you have to deal with from your GP!! As much as I have felt jealous of the National Health Service, I am sitting here slack jaw glad it's not the right season for houseflies!

 

Here you need a doctor to prescribe all manner of tests from bloodwork through PET Scans. That said, my rapport with two of the GPs in the practice I used was quite good. Over a period of a few years both men had been my GP depending which insurance I had on any given month. They knew that I only came in if I was very ill or injured. Because of rules that even they had to obey, I had to have tests done in the right order, but I needed only to ask. I requested the X-Ray due to cough and 10 pound loss (weight never varied more than 3 pounds back then - when I was very thin). The X-Ray showed a "spot" so the CT was the next day, then they asked me if I wanted them to check me into a hospital for the biopsy or just refer me to a pulmonologist. I chose the latter and was seen in 2 days. Biopsy scheduled for 5 days later but results were 3 days past the 7-10 days. The receptionist snapped at me and made me cry with her rudeness when she ASSumed I was nagging about results when I was there to pick up an Rx for pain. In her snapping she told me that if I didn't like it I should call the hospital myself. I did and was told that the results had been sent first thing that morning!! 5 hours earlier!! I asked her to fax to my GP and then let them know to expect that fax. He called me back in less than 10 minutes. Cancer, squamous cell, non-small cell. What else could he do for me. I said I guess a PET Scan is next and he agreed. He said that the office manager would get back to me and if I needed ANY thing, to PLEASE call the office immediately!

 

You can't even imagine a doctor being so kind that it makes you cry "oh, that's so sweet" tears when you should be crying yourself into a corner with no clue what to do or where to turn. I was more sad about moving to another state because they couldn't be my Drs. anymore than I was about leaving some friends!!! :-) That said, my only advise would be to shop around until you found a doctor who still knew the oath they took when becoming a doctor. First, do NO harm!!

 

Best of luck to you!!

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Thanks for your responses Mary and Tom, I'm so glad to have the opportunity to communicate with people who have an understanding of lung cancer and really pleased to hear people doing so well after beating the disease.  What really frustrates me is that lung cancer awareness is pointless if your GP is not on board.

I have been resourceful in the last few days though, I have managed to find a doctor that may be willing to refer based on the outcome from a consultation with him.  He has looked at the blood test results and seems to be taking them serious.  I see him tomorrow and in anticipation have already booked in a CT SCAN for late afternoon.  It's quite expensive but as I have had such a terrible year, I thought well worth the peace of mind.  What really annoys me is that I am so fortunate that I could raise the funds to pay the fees, but many people couldn't.  If anything is found on the scan it will really show that the balance of your bank account could mean a significant difference in the health care and outcome you receive.  Not quite the NHS that we try and hold up as an example.

I have also contacted a company with a view to allowing them to use all my details for a case study to be put in the public eye.  This is looking promising but is obviously based on me having a positive finding.  Do you think it would raise awareness and is it the right thing to do?  I have seen 5 GPs and 6 consultants so far and I feel that not one has listened to me.  I may be wrong but somehow the symptoms have been so closely related to SCLC that I just can't see how they are not seeing what I am seeing.

Tom, when you leave the military here you pretty much cut ties with the organisation.  You hand back your ID card and that is about it.  There are some charitable type organisations that you can join but no true veterans association like you have.  Most of the military medical facilities were also rationalised and certainly before I left, I was just sent to a hospital in the middle of the country manned by civilian staff but who also took on care for the military.

 

Rant over, I hope to get to the bottom of this soon.  I forgot that my initial question was to ask advice on trying to make people aware of this by going public if I do get a diagnosis of LC?  5 GPs and 6 consultants will certainly need some educating.  If I didn't have such a good employer and especially manager. I would be out of a job too.

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Aaron,

 

Am interested in learning the view of your new GP and the results of your CT.

 

Would also be very interested in learning of your success about putting lung cancer diagnosis and treatment in the public eye.  In the US, if research funding were the measure of public awareness, lung cancer would resonate at the level of the number of people who are capable of solving simultaneous differential equations in their head....

 

Stay the course.

 

Tom

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Hi Tom,unfortunately my primary care providers will still be at the medical centre where I am registered. I expect to see this new doctor twice, once to get the scan authorised and once to get the results. He is too far away to be of a practical use and too expensive. If I do have any malignancy then my GPs should be ashamed of themselves considering that I went to see them 14 months ago saying I suspected lung cancer. At my first appointment they seemed to want to railroad me into a mental health diagnosis. Prescriptions have been interesting, enough anti-depressants to subdue the population of China with some random drugs thrown in for good measure. I kid you not, Viagra was one of the biggest surprise prescriptions to date. I think that there is a lot of good information out there in the public domain but many GPs dont pay attention to it and they are not held accountable. That is where a lot of education should be focussed. One thing that has kept me pushing for an answer was sites like this and time and time again early diagnosis keeps coming up. This has been highlighted many times by Eric Byrne (lungevity super star) here in the UK but my experience has demonstrated that GPs are falling short and are missing signs too often. I certainly will stay the course!

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