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Posted

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.

Posted

Thanks for the update.  Glad you have persisted in getting that CT.

Sad results but it is better to know and get it treated than have it grow

and spread because you did not know.

Have you an appointment for biopsy?  or with an Oncologist?

 

Keep us posted.

 

Donna G

Posted

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.

  • 4 weeks later...
Posted

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.

  • 3 weeks later...
Posted

Hi Aaron,

 

I am glad the rant helped! It must be SO frustrating for you to be so sure that you have practically done 75% of there job, only to be shut down when you try to hand them all of the footwork that you have already compiled for them!!

 

I was wondering why you didn't just get a new GP, but it looks like you have that next on your list. :-)

 

I am not sure what to say next... that I hope the 4 MM spot grows to 5 so you can get on to the next step, but then I hope it's benign so that you don't have cancer and then they can get to work on your tummy!

 

 

Good luck & God Bless,

Mary 

  • 2 weeks later...
Posted

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 weeks later...
Posted

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.

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