I have strange symptoms and think that I have SCLC

[ale12345]

Hi,

I have since 5-6 weeks pain in the fingers and sometimes in the toes, a bit breathing problems and wheezing when lying. I also have chest pain on the right side on one point.

I visited a pneumologist 4 weeks ago. He did a lung function test and x-ray. x-ray was clean.

Then my symptoms got worse and He sended me to a thorax CT (without contrast cause I am allergic to it), which He and the radiologist told me was fine too.

Now I am reading that CT thorax without contrast is not that accurate, expecially for tumors and I am worrying that I have SCLC since I still have this paraneoplastic symptoms and my symptoms get a bit worse. Now with nausea.

Anyone has any idea? 

Problem is now between christmas and new year the doctors are hard to get and most are on holidays.

No idea what to do now.

[LouT]

Hi Ale,

Sorry to hear that you are not feeling well.  In order to help you out regarding how Lung Cancer is diagnosed you should read "Diagnosing Lung Cancer".  It discusses the various tests needed to determine if someone has lung cancer or not.  Meanwhile there were tests done in the USA to determine if contrast was significantly more accurate and non-contrast and the testing methodology and results can be found here.  The conclusion they came to is that, except for vascular thrombosis, the results were almost the same.  

In your case they are finding nothing there (which is great news for you).  I'm a three-year lung cancer survivor and my oncologist had my last CT Scan done without contrast and when I asked if it was as accurate he assured me that while contrast may add some small additional detail it was more than adequate for my purpose.

You seem to have concerning symptoms and I would continue to follow up with your primary care doctor until you can get solid answers to account for your symptoms.  Please update us here when you do that.

Lou

[ale12345]

First of All congratulation to your 3-year lung cancer surviving! This is awesome!

Many many thanks for your detailed answer!

I already went the way I could do. Starting with a pulmonologist, then got the regular check up and questions I had to answer him, after that He sended me to a lung function test, which came back normal.

Then He sended me to an x-ray, which He told me was clean and without any problems. 2 weeks later After I told him my symptoms are still there and getting a bit worse,

He sended me to get the CT (without contrast, btw He told me with or without contrast, there is no big difference) 2 weeks ago.

And after one week I had once again an appointment by him to get my CT results. I went to him and He was checking my Thorax CT together with an radiologist.

Both of them told me my CT Thorax looked fine. This were great news 2 days before Christmas. 

Problem is since then my symptoms got a bit worse. That's why I am so convinced that I have SCLC and maybe it was too small for the CT (without contrast), and since I read SCLC is very aggressive, I already worry a lot that this could the reason for my symptoms getting worse and I am already on the way to my end.

In terms of diagnostic, I do not think I will get a CT that fast after the last one. Maybe a PET CT?

So could I do a Bronchoscopy then next? I have an appointment at my pulmonologist on January the 11th, since He is on holidays and other Pulmonologist doctors are not that fast available. Most give appointments in 3-4 months at the earliest.

My primary doctor is also on holidays so,

right now I am very desperate and have no idea what to do. 

[ale12345]

On 12/29/2022 at 3:12 PM, LouT said:

Hi Ale,

Sorry to hear that you are not feeling well.  In order to help you out regarding how Lung Cancer is diagnosed you should read "Diagnosing Lung Cancer".  It discusses the various tests needed to determine if someone has lung cancer or not.  Meanwhile there were tests done in the USA to determine if contrast was significantly more accurate and non-contrast and the testing methodology and results can be found here.  The conclusion they came to is that, except for vascular thrombosis, the results were almost the same.  

In your case they are finding nothing there (which is great news for you).  I'm a three-year lung cancer survivor and my oncologist had my last CT Scan done without contrast and when I asked if it was as accurate he assured me that while contrast may add some small additional detail it was more than adequate for my purpose.

You seem to have concerning symptoms and I would continue to follow up with your primary care doctor until you can get solid answers to account for your symptoms.  Please update us here when you do that.

Lou

Problem is I found in your link nothing about thorax CT with and without contrast. The results were  for CT abdomen. 

So I really worry that my CT thorax without contrast made it possible that sclc was not found or easily overlooked by the pulmonologist and the radiologist. 

I was also irritated by the pulmonologist who said CT thorax with or without contrast is nearly same. That's and my problem with Jod is what made me not to take CT with contrast. 

No I think with contrast maybe they would have found the sclc early enough to go for surgeon. 

Now I think that it has already grown very fast and spread to other places. And that I am completely doomed. 

[LouT]

Ale,

Perhaps this article from Cleveland Clinic Journal of Medicine can help to put your mind at ease.  Regardless of the area while contrast may improve some definition (such as  border around a lesion), non-contrast would not totally miss a nodule or tumor unless it is so small regardless of having contrast or not.  I hope this helps Cleveland Clinic Article.  Please remember that even if a nodule is found that the majority of lung nodules are benign.  Perhaps once you meet with your doctor you'll get more specific information that can help relieve your anxiety.

Lou

[ale12345]

Many thanks for your fast reply! 

[ale12345]

On 12/31/2022 at 2:34 PM, LouT said:

Ale,

Perhaps this article from Cleveland Clinic Journal of Medicine can help to put your mind at ease.  Regardless of the area while contrast may improve some definition (such as  border around a lesion), non-contrast would not totally miss a nodule or tumor unless it is so small regardless of having contrast or not.  I hope this helps Cleveland Clinic Article.  Please remember that even if a nodule is found that the majority of lung nodules are benign.  Perhaps once you meet with your doctor you'll get more specific information that can help relieve your anxiety.

Lou

HI LouT I am in great worry that I really have the SCLC since my symptoms got worse in the last days.

I have a really strong wheezing while lying and now I have right back pain on the same side where I have chest pain (my chest pain comes and goes).

My finger and toes pain also comes and goes and I have mild breathing problems. Else I do have a bit nausea.

The pulmonologist who checked me has holidays since the 9th January. I do not know if ER can do something since they mostly check heart and do a blood test.

What do you think about my situation?

many thanks!

[LouT]

Ale,

Please make sure you share all symptoms with the doctor and ask any questions that may flood your mind later.

Lou

[Karen_L]

Our impulse to understand our physical situation is often so strong that we go searching for our own diagnosis online. Unfortunately, Dr. Google is all too often a quack.

For now, I urge you to step back from diagnosing yourself and searching for the "right" diagnostic test. Instead, go to the doctor with all your symptoms, the timeline of events, changes, etc., and your worries.  

Of course, if your breathing worsens or your concerns grow, seek immediate care. 

Hang in there.

Karen

[Kamoto]

X-ray negative, CT is negative, no doctor will send you for a PET scan.  In the US that costs 7000 bucks on average.  If your really concerned maybe pay for the PET scan at a private facility or take a trip to the US.  My lung cancer easily showed up on just an X-ray.   3.1 x 2.7 mm.  Size of a grape