aaron
Posts:41
Hi,
I've been reading some information on the Early CDT test, including Dr West's good explanation of the stats. Most of the information I can find is from 2012 and I was wondering if there are any new updates on this test, have the tests been refined any to give a better hit rate?
Also if you get a positive test, is a doctor likely to take action off the back of it? These tests are now becoming more widely available in the UK and I was wondering if this was in part due to more confidence in the results.
Many Thanks
Aaron
Forums
Reply # - January 21, 2016, 11:28 AM
I've managed to find some
I've managed to find some info on my previous post and it certainly sounds like some promising results
"The National Health Service ("NHS") Scotland-sponsored Early Cancer Detection Test – Lung Cancer Scotland ("ECLS") Study of 10,000 high-risk smokers demonstrated a cancer detection rate (sensitivity) of 81% for EarlyCDT®-Lung in these initial results. While the control arm in the study has not been formally assessed, the positivity rate was as expected with a specificity of 91%. "
https://globenewswire.com/news-release/2015/09/08/766640/10148517/en/Pr…
Given these stats I am surprised that we have not heard more about this. Should I be suspicious of the news report?
I'd still like to know if a Doctor would be likely to take action off the back of a patient getting a positive test on a test that the patient had ordered.
Aaron
Reply # - January 21, 2016, 04:25 PM
Hi Aaron,
Hi Aaron,
I hope you are doing fine. Since this trial doesn't have conclusive data yet it's difficult to say what it all means and how it can be best used. But it does sound very encouraging and something we all want to see very soon. These tests do seem to be available and possibly be covered by insurance but I'm afraid our doctors wouldn't have experience with them because their patients come to them only after a diagnosis of cancer. They're not part of diagnostic process. That would be a question best asked of a pulmonologist. I hope you find peace of mind.
Janine
Reply # - January 22, 2016, 03:34 AM
Hi Janine,
Hi Janine,
Thank you for your reply. Totally understand that an Oncologist comes into play after diagnosis. In terms of education I think detection is an important topic in Cancer and it can be difficult to weed through the internet without getting worried about things you don't really understand. I am just surprised that I have not heard more about the Early CDT test though, especially as it does seem to be producing results. I have decided to get tested after looking at the trial in Scotland. Scotland in particular are excited about this and I've included a link to a very informative video. If you need me to translate, just shout!
http://bcove.me/nyvqpvyp
The Chief Medical Officer for Scotland has said that "This is a landmark for cancer detection and the beauty is in its simplicity". When the Chief Medical Officer of Scotland, Sir Harry Burns, gets excited about something, you can bet there is something in it. Interesting that it can be such a win win in terms of earlier diagnosis for the patient and cost saving for the country (which will help make the politicians take note).
Kind Regards
Aaron
Reply # - January 22, 2016, 06:40 PM
Right Aaron, this is very
Right Aaron, this is very exciting stuff. Our faculty and other contributors in the research community have been focused on blood tests that target genetic mutations and they are on the verge of being as accurate as tissue testing. As the wife of a man who has had so very much difficulty with tissue biopsy I'm not at all suggesting it's not important. I'm poised and waiting for the news as well.
Reply # - January 23, 2016, 04:21 AM
Hi Janine, I hope that my
Hi Janine, I hope that my post didn't suggest I was in anyway critical of the great work done by this site. I am so grateful that it is available and I appreciate the time commited by doctors, mods and informative contributors. I was just trying to express frustration at the great work being done and progress made, yet this doesn't seem to carry a high profile. I think we could get more public backing if the advances made were better publicised. I found the recent stats from the E CDT trial quite astounding, if they are indeed as claimed late last year, what an improvement on 2012 figures. Lastly, my offer to act as interpreter for the video was a poor attempt at humour. Having spent a fair bit of time in the States, mostly Georgia, North Carolina, Arkansas, Tennessee and Alabama, I can tell you that at times the accent can cause confusion.
If I did offend in anyway, then I do apologise. I will be more careful of what I post in future. Kind Regards, Aaron.
Reply # - January 23, 2016, 06:34 AM
Thanks Aaron no problem at
Thanks Aaron no problem at all. I think the wait on action is that the data aren't in to say what it means so we have to wait. It would be a shame for diagnoses to be missed or cause undo stress because of misinterpretation.
Reply # - January 28, 2016, 01:02 PM
Hi, I just thought I would
Hi, I just thought I would update as my test came back positive. I feel stuck in a bit of a strange place with having had a clear CT back in April and yet a persistence of symptoms that I keep relating to sclc. I guess that when I next see my GP that I will find out if they think that the test result is worthy of further invest. I did also hear that they may be extending the trial as results are looking good.
Reply # - February 7, 2016, 07:05 AM
Having taken my results to my
Having taken my results to my GP I left with my tail between my legs as it didn't seem to concern them. My Early CDT Lung test gave a positive result on the P53 Autoantibody. From the details provided by the trial team in Scotland
http://red.st/1XPA
I have a 1 in 9 chance of having malignancy. Given that I have suffered weight loss and on going fatigue (amongst other stuff) I do feel that I am nearer to being the 1 in 9 rather than the 8 in 9. Looking specifically at P53 autoantibodies, it appears that these are strongly related to malignancy and are seldom seen in normal subjects. I accept that I had a clear CT back in April but I'm still convinced that something is going on. As I can't get a referral for a CT scan here I was wondering about trying to get an MRI as it may be possible to get an MRI without referral. The question is, is an MRI likely to show SCLC?
Failing that my other alternatives seem to be going to a vetinary clinic with CT facilities and asking them to consider me as a primate or to wait until I get so bad that something will be done (not ideal as I'd rather find something sooner rather than later).
I've also considered cantacting Oncimmune to see if I would make a case study, but I guess they wouldn't be keen until they know if the test has picked up a true positive. If it is a true positive then in my case, the test has out performed my CT in April.
So with your knowledge, would an MRI scan be a worthwhile test for looking at potential early stage SCLC?
Many Thanks and Best Wishes
Aaron
Reply # - February 7, 2016, 07:51 AM
Hi Aaron,
Hi Aaron,
As noted in the brochure you cited, one of the biggest problems with a screening test of this sort is that a very high percentage of patients whose results are positive will not have lung cancer. That means that 8 of 9 participants will worry unnecessarily that they have lung cancer.That's not to minimize the value of catching lung cancer in 1 of 9 patients, but if the sponsors accrue the 12,000 patients they seek, quite a few people without lung cancer will face that worry.
As the brochure describes, patients with positive results go on to further testing, unless they have previous clear scans. That is an important part of the process: only the scans can determine who needs further workup and treatment.
In your case you have had symptoms for quite a while but multiple scans showing no evidence of lung cancer. It would be extremely rare (a great deal less often than a 1 in 9 chance) for lung cancer, especially SCLC, to present in this manner. It is almost always true that the cancer is present well before any symptoms appear, and the symptoms would increase and the cancer grow within the time frame you've described, making it even clearer on an x-ray or CT..
An MRI probably would not be of much value, as a CT is the scan that would best image the chest for these puposes.
JimC
Forum moderator
Reply # - February 7, 2016, 08:22 AM
Thank Jim, I'll save my money
Thank Jim, I'll save my money and time then. I am so sorry for constantly posting questions on this thread, but please be assured your replys are a great help. I'm not sure about the maths though with 12,000 patients they are expecting to get around 450 positive tests back. Eight in nine of these expected to be false positives, still a worry for 400. I managed to speak to a provider of the test and they are seeing positive results in around 5% of samples taken. They couldn't tell me how many of these turned out true positives.
I think getting a negative result would be less meaningful until the sensitivity of the trail is shown to be more than around 40% (I believe it is up to around 81% but this is unvalidated as far as I am aware).
As always, a big thank you from me.
Aaron.
Reply # - February 7, 2016, 09:21 AM
Hi Aaron,
Hi Aaron,
Yes, my math was way off...thanks for pointing that out. I've edited my earlier post.
Best,
JimC
Forum moderator
Reply # - February 12, 2016, 01:57 PM
Well I have had the CT and it
Well I have had the CT and it has picked up a 4 mm nodule. Given that this did not show on CT 10 months ago I am a wee bit worried, especially with the fatigue and Early CDT result. On the other hand I am pleased that if anything unsavoury is present at least it is small. Is 0 to 4 mm in 10 months rapid growth? I will hopefully see a pulmonary doc soon, but to get there I need to try and convince my GP that this would be a prudent thing to do, at the moment my GP is indicating that there is nothing to warrant surveillance. Thanks as always.
Reply # - February 13, 2016, 09:13 AM
Such a small bit of growth is
Such a small bit of growth is pretty indolent for 10 months. Normally a 4mm nodule is caused by an infection and or inflammation. If there is concern that the nodule is growing then another scan in 3 or 6 months is done to see if the it has grown, stayed the same or gone. A nodule that size doesn't cause symptoms unless it's pressing on a structure such as the esophogus.
I hope you do well,
Janine
Reply # - February 14, 2016, 02:15 AM
Thanks Janine I didnt think
Thanks Janine I didnt think it would be infection as it is well defined. I will be seeing doctor tomorrow hoping to get refered to pulmonary doctor.
Reply # - February 18, 2016, 07:13 AM
Hi GRACE
Hi GRACE
I thought I'd update as I've seen Pulmonary doc. He didn't really have an explanation for why this nodule has appeared and is requesting that a radiologist looks at both scans together. I thought that the Pulmonary doc would be able to look at the scans side by side and comment on the change. Is there much more value that a radiologist can add?
My doc said that the British Thoracic Society don't recommend any follow up for anything less than 5mm, but given my ill health over the past 14 months I'm inclined to disagree, even if it is for peace of mind, and will probably look to get another scan in 3 to 6 months. I'm surprised that quite often no follow up is mode on nodules of less than 4mm, surely a 10mm nodule once went through the 4mm stage?
Thanks Team
Aaron