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Aaron Y

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Aaron Y last won the day on December 4 2015

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  1. Well I managed to see my GP. He asked what I expected from him, I said I wanted to work with him to get to the bottom of my illness. I documented all the tests I'd had and highlighted the abnormal and indeterminate ones. He offered antidepressants despite a letter from the clinical psychologist saying there is no psychological condition present. As you know I am convinced something is underlying, which I suspect is malignancy, potentially sclc based on my novice reading of the test results. I decided to search for more help and found a Dr based in London who had set up a charity to help people who had come to a dead end with their own GP. He gets help from a network of specialists that the charity has built up. I sent him my case and the great man called me at home to discuss. He agrees that something is not right, and it isn't all in my head. He and his colleagues feel that we should be suspicious about something in the chest. He commented that the human body is good at hiding things and that I should look to get another scan in the future. He was also frustrated at what I have been through and the difficulty I had organising a scan. He is going to write to me summarizing his recommendations. This should help me to organize a scan at a later date and might even make my GP pay a bit more attention if I present him with the letter. So I felt a bit better as at last a medical professional has recognised something might be wrong and that I appear to be on the right track. I just can't believe that what looks to be quite obvious signs to me are not being accepted by my own care providers. Aside to this, still feeling fatigued but getting on with life. Hope you are all doing well.
  2. Hi Mary, Thanks for your update and humour! I have just finished a course of cognitive behavioural therapy as recommended by my doc. The result of which is that the psychologist reports that there is no sign of any psychogical issues causing my symptoms, I must admit that I was a bit puzzled as to how mental illness could be responsible for a 4mm nodule. So I am going back to my doc to ask him what we do next. I have done a summary of all my abnormal and indeterminate tests, and asking for a holistic approach to be taken. There must be something that connects everything. Although changing docs in the UK can be done, it all depends if the doctor you want to move to has spaces for new patients. In my area, the general answer is that everywhere is full. There are many good points about the NHS, but quick treatment and freedom of choice are often limited. I have also found a charity that has some medical connections, they may look at my case and advise. Unless I get some guidance I will just have to wait a few more months and find the funds for another private gp who will authorise a self pay ct. It is kind of therapy posting here. When I do get a diagnosis, at least I will have some enduring record of my journey. I'd like something to be public, especially if it is a malignancy, as it just shows that educating the public loses effectiveness if the medical profession are not on board. As Tom would say, I am staying the course. Regards to you all.
  3. I thought I would update on this. I managed to get referred to a respiratory consultant and hit yet another brick wall. The early CDT test is not recognised over here so the positive result cannot be considered. As for the nodule, it is 4mm and the British thoracic society guidelines state that no further action is necessary for nodules of 4mm or less. I was hoping for a more pragmatic approach, especially given the blood test result and the fact that a 4mm nodule just might become a 5mm nodule. So I guess that it is down to me to find a gp in 6 months that will authorise a scan. Feeling unwell is bad enough but the lack of support and having to find the funds for further invest is really getting to me. Sadly I see a lot of our doctors striking over pay, I wish they would put as much energy into patient care. For the first time in my life I am asking for some help and feel that support is not being offered because the system has produced a guideline they can hide behind. When I think about sacrifices I made for Britain I didn't consider looking for the small print to get me out of going to the Falklands, Kosovo, Middle East or anywhere else they asked, it makes me angry. How can we have so many politicians singing the praise of early diagnosis for cancer when they have an organisation that is contrary to this? Rant over, I feel better now and also like to say I spent many happy days in the US on my travels. Hope you are all doing fine.
  4. Thanks Donna, I appreciate your response, thank you. In order to move forward now I need my GP on side. I've had to pay £1500 (around $2000ish) to get these tests done. My private insurance company won't cover them because no doctor recommended them and as I've felt ill for over a year they consider this a chronic condition which is no covered. So I'm desperately trying to get back into our National Health Service system. I've been paying all my taxes for this for the last 33 years and served in the military for 23, so I hope they take notice. Initial approach to my GP was not good as they don't think a nodule of 4mm or less needs monitoring. Hopefully I have enough evidence to convince them to take note. If not I may have to sell my wife and child to raise funds for a rescan at an appropriate time (3 to 6 months?) I am so pleased that I paid for a blood test that I read as showing possible acidosis, that led to me ordering the early CDT test that led me to seeking a CT scan that has shown something is not right. It has been tough on my family as there is never support for someone who thinks they are ill, but once a doctor gives a diagnosis then a lot of help will be available. I am so glad that sites like this exist and people are willing to offer support. It means a lot.
  5. Well, some of you may have read my posts about the Early CDT blood test which came back positive. I managed to find an out of town doctor that authorised my request for a private CT scan. The scan picked up a 4mm nodule that wasn't seen on a scan 10 months ago. Obviously with the positive blood test and my symptoms I am worried but so pleased that I had the courage to press ahead on my own. I feel a bit of relief that finally I may be able to explain my symptoms and finally get treatment. Initial reaction from my GP hasn't been good but I hope they come round to seeing it from my perspective and perhaps they could've picked up on some of the symptoms. 14 months is a long time to go with no diagnosis and at my first appointment with them I stated that I suspected a hormone secreting tumour in my lung. I still don't have the final diagnosis but I don't think that I will be far off the mark.
  6. 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!
  7. 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.
  8. 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
  9. Just found this thread. I have had numerous symptoms for a year that I felt related to sclc. A negative CT in April kind of ruled this out. As symptoms continued I decided to have early CDT blood test. That has come back positive. Now I am stuck with what to do next as gp says ct ruled out lung cancer and the early CDT is not an approved test (it's showing some good results though). I could do with any advice to help me get over the next hurdle which I feel is to get a ct scan, but here in UK I need a doctor to refer and they won't based on a test in trial. Catch 22.....
  10. Hi, does anyone have any experience of low bicarbonate levels with SCLC. I have been looking through my blood test results and various web sites and I have low bicarbonate serum levels, when researching this I found that I could calculate something called an anion gap. This shows I have metabolic acidosis. A possible cause of this is malignancy. I was wondering if anyone has come across this in you journeys. I have a number of symptoms and I am looking for any help to guide me. Thanks everyone.
  11. Thanks Barb, that seems to fit in with the general stats. Still great that you got checked out and got it sorted early. There sill seems to be a big question around detecting early SCLC, I'm surprised that there doesn't seem to have been much done about this (there probably has, but I'm just not aware of it).
  12. Barb, I think the fact you had the good sense to get a scan shows how much awareness is increasing. Good that you caught it early, in much of the literature I have read it downplays the role of CT in SCLC screening. You are the first I have heard to catch it early through screening, you demonstrate the importance for getting checked if you have any concerns. I hope your recovery continues to go well.
  13. Thanks for the reply Donna. I can see some stats that tells me that the sensitivity of CT for detecting SCLC in screening people is around 80% This tells me that if a large number of people who were not showing any symptoms were given a CT scan and say 100 of this large group of people actually had SCLC then the CT would detect around 80 of them. I am guessing that if the group of people were showing symptoms of SCLC then more than 80% should be picked up, but I can't find anything to substantiate this and it would be interesting to see the percentage. It seems really hard to arrange a PET scan as all the doctors seem to send you for an X Ray or CT scan, so are we missing a trick and could this explain why more SCLC is diagnosed at extensive stage? I've tried to ask a chest physician and he said that if a CT was clear then there was no grounds to get a PET ordered. Aaron Y
  14. Hi, there is lots of information published around the sensitivity of CT for screening in asymptomatic people. I can't find anything to suggest the sensitivity of CT for SCLC when people are experiencing symptoms. Does anyone know if this information is available? Thanks
  15. Thanks for sending this link Denzie. I do appreciate it. The only tests I could find were for those who already have a diagnosis, so my quest goes on. I did see another doctor last week and he doesn't think that the blood test results have any clinical significance, but he will look a wee bit closer at the sodium one. I can't understand why there is not much concern when a number of them are outside the reference range and to me it is clear that the platelets are on a downward trend. If I didn't feel terrible I would be ok with it. I'm always open to suggestions if anyone can think of anything. I hope everyone has a wonderful thanksgiving and best wishes to you. Aaron
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