Worried about Pancoast Tumor

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Shoegal519
Worried about Pancoast Tumor

Hello - I know you get so many posts about worried individuals about Pancoast Tumors so please forgive me in advance. I am a 49 yr old woman and I have had severe burning pain in my neck, shoulder/scapula area and rib area (most severe) since February 2016. I also have shoulder and arm pain but that is only when I lift something or get dressed. I also have symptoms of Horners disease but that actually started when I started taking Lyrica so I am not sure if that is a result of the Lyrica. I was diagnosed with Complex Regional Pain Syndrome in September. But after reading about pancoast tumors, I am now worried. I did have a chest X-ray and a chest CT scan with dye in December 2018 when I went to the ER and they both came back normal. The CT scan came back normal but also stated that I was moving a lot. I also had shoulder X-rays on both shoulders in May 2020 and everything was normal. Should I be worried that this could be a pancoast tumor? It is almost 5 years that I have had this pain, if it was a pancoast tumor, wouldn’t I have serious cancer symptoms since it has been almost 5 years with all of this pain? My bloodwork is normal. If it is a pancoast tumor, would something show up in my bloodwork? I am making an appt for a pulmonologist tomorrow to try and get a new ct scan. But wouldn’t the tumor have showed up in the ct scan in 2018 even though I moved in it? I am just so scared now after reading stuff on the internet. And I am a smoker so it just made me sick in my stomach to read about this type of tumor. Please help ease my mind if you think that it would have shown up in my 2018 chest X-ray and and chest ct and shoulder xrays.

JanineT Forum M...
Hi Shoegal, Welcome to Grace.

Hi Shoegal,

 

Welcome to Grace.  I'm sorry you're having so much pain.  This is strictly a nonprofessional point of view; If I've learned anything about little-understood neuropathic pain is that little is understood about how to treat people or even understand what patients are trying to convey. 

 

Since it sounds like you've read at least some of what members have had to say about pancoast tumor scares I'm not going to repeat it.  They are very rare and the symptoms can sound like one of the most problematic musculoskeletal areas of the human body.  

 

I'm going to talk about my experience with my husband.  He was a cabinet maker and started to have pain in his shoulder when it continued to get worse he went to the doc who did an xray that didn't show anything then an MRI that showed some ortho problems in the shoulder.  He was prescribed physical therapy after 5 weeks it only got worse.  It wasn't until he had a CT that the pancoast tumor was picked up.  There was a consensus among the several docs I asked about why it wasn't picked up by the xray or mri the answers were, the xray doesn't have high enough resolution to pick up all tumors and bone could have hidden the tumor.  An MRI takes images of smaller spots, bone could have hidden it or it was pointing in the wrong direction.  They weren't looking for a pancoast tumor.  For lung cancer a CT is the gold standard for looking at the lungs, other types of scans can miss a tumor especially if you don't know what you're looking for.   

I understand that his docs were looking for the most probable problems first.  You catch the largest amount of issues that way.  But then you have to continue to look for answers which is where the CT came in. 

 

I'd ask a radiologist about your CT results. 

 

I hope you can find relief soon,

Janine

Shoegal519
Hi Janine - thank you for

Hi Janine - thank you for your quick response!  I am going to make an appointment with a pulminologist on Monday.  So based on what you know, can you share your un-professional opinion?  Do you think if I had a tumor it would have shown up on the chest ct that was done in the ER in 2018?  If it is a pancoast tumor and has been left untreated, wouldn't I be close to dyeing at this point since I have had the pain since 2016?  I am just so scared and of course it's the holiday weekend so now I have to wait until Monday to even schedule an appointment.

JanineT Forum M...
This isn't my opinion but a

This isn't my opinion but a CT scan picks up pancoast tumors that have caused pain for 2 years.  You said there was a problem with the scan so that could cause issues with reading it.  If you haven't yet, You could check with a radiologist about how readable the scans are.  But then yes if it's in good focus and they can read it, it would pick it up. 

 

And yes a person with a pancoast tumor that's caused pain for 4 years would almost surely be dead without treatment. 

 

What I've learned over and over is that nerve pain is a tricky little bugger to treat. 

 

 I hope you find ways to mitigate your pain.  Best of luck.

Janine

Shoegal519
Thank you Janine!!  One last

Thank you Janine!!  One last question.  With a pancoast tumor,  is pain on both sides or just one side?  I have shoulder and arm pain on both sides - equally the same.  

JanineT Forum M...
Pain on both sides isn't a

Pain on both sides isn't a symptom one would associate with a pancoast tumor. 

I too have pain that moves down both sides.  Following the anatomy, pain symmetrical along both sides of the body suggests a problem on the spine.  It just doesn't sound plausible that you could have a pancoast tumor that has invaded the spine without devastating effects at best. 

 

Keep moving Shoegal,

Janine