Pancoast Tumor / Pancoast Syndrome & CT Scan

sweetnlowe

This is long...but I could really use your help if you've had Pancoast Tumor diagnosed.

I was wondering if any Pancoast Tumor patients / survivors would help me a bit. I recently moved 6 months ago to a remote, country area over an hour away from a quality cancer healthcare. Over the past year I had been gathering symptoms until finally in January what I had believed was "frozen shoulder" medical condition became an overwhelming painful condition involving all the previous symptoms now combined together:  Scapula, Shoulder, radiation down ulnar to ring finger & pinky fingerr - bulging and painful forearm and painful area above left breast. I also had sore throat and horner's syndrome intermittently - at least that I could feel. The pain in my head was steady and increasing and I felt a lot of what I consider lymph movement throughout my body, pain in kidneys and painful lymph bumps running down both sides of the torso.  Additionally, my blood pressure was screaming high during this time epsecially when the horner's syndrom was active. I despise running to the doctor for stuff but I was in so much pain and I was running out of energy & short of breath. Daily the condition was worsening. I had not looked up my symptoms online but I did describe (All) my symptoms to my husband. Because FaceBook listens into our conversations  - and no...I'm not kidding, it popped up some sort of advert that said that caught my attention. It indicated that sometimes shoulder and arm pain are symptoms of lung cancer. I looked at it and was shocked that each and every one of my symptoms was listed for Pancoast tumor, which is a form of lung cancer I had never heard of before. I was in agony.

During this time (beginning of Feb 2019) I picked a P.A. (doctors are almost impossible to get into for a first time visit in my region). I had typed up all my symtpoms. I knew I would have less than 15 min to get her to trust me that I knew my body well (I'm 54) and that as a previous executive I'm not an idiot and all my symptoms are not fibromyalgia. I recognize that fibromyalgia is the throw away diagnosis for lazy med care researchers. I also knew that I would have to tell her why I suspected a Pancoast tumor and expected the typical health care rep derision for patients who "self diagnose". I am self pay and didn't want to waste my $125 for the visit without getting a CT scan. I was as polite as I could be, suffered through her Millenial aged irritation with boomers and their many health complaints. I needed her to work with me and didn't want her to dismiss me so I really was as nice as I could be while trying to be insistent on getting an order for the scan.  I had predicted the interchange correctly. The PA was not familiar with Pancoast Tumor but when I said it was a type of lung cancer, she started the regular check for lung cancer symptoms (cough, blood sputum, etc) In the end she reluctantly gave me an order for a CT Scan. 

It was a week out for scheduling the scan and every day my condition got worse so that I was now putting my affairs in order. I knew that pretty soon I was going to need hospice because the strength to hold my head and hands up to do anything was getting worse and I was starting to become bed ridden. On the day of the scheduled scan my vision was blurry and I could barely move. There was some type of mixup on the schedule and they told me that I wouldn't be able to have the scan until the following week (8 days later). I was pretty sure I wouldn't be mobile within a few days. I went to the hospital on the way home to get the scan. The ER crew was not taking too kindly to my non emergency.  I was in agony, but not screaming. The ER is not accustomed to having people utilize them for a scan without being a heart attack type emergency - so there was irritation on health care providers out the gate. When I went into the CT scan they wanted me to put my arms above my head. I could not lift my arms AT ALL. I received the scan and was told it would take 40 min for radiologist to read it. The ER doc- who just got out of med school - popped in the room within 5 minutes. He  told me my scan was completely clear and there was NO sign of any tumor present. They did utilize contrast for the scan, in case that matters. I was so surprised at this result that I did not ask if he would still be having a radiologist read it. It has now been 2 and 1/2 weeks later, and I still do not know if the scan was ever read by a radiologist. 

The next day I called to say my final goodbyes to two of my closest friends in another state. The day after that I could not lift my head or hold my cell phone with my hands but at 9am that evening what I thought must be some type of miracle occurred. I noticed the pain was signficantly lessened and my head was not in pain. I was flummoxed. The pain has subsided significantly all over, though my arm is still pretty paralyzed to my elbow and I still have the lump in my armpit, only smaller. So now I am just over two weeks from my scan and all my symptoms have signficantly lessened. I am still alive and though I still have trouble dressing myself, I can function okay. I am still having shortness of breath and need a 3 hr nap each day.  I also still have at least one horner syndrome occurence each day. I am now only have occasional occipital lobe pain, but my scapula does not have anywhere near the pain I was having and I can have it touched without agony. Clearly the pressure on the brachial nerves has been reduced significantly.

My questions for any who may have insights into Pancoast syndrome and tumor are:   1. Could the CT scan provided me just enough radition to reduce a tumor to relieve the pain for a while? 2. Is it common to have false negative CT Scans for Pancoast Tumors? I have not read anywhere on this site where an individual has had a false neg scan. I am able at this point to pretend there is nothing really wrong with me other than the occasional shooting pains and the lump sitll in my forearm. Because I am self-pay due to being self employed, I realize I need to get Medicaid. I started that procedure but due to the length of time to get that worked out I haven't pushed for other doctor appointments. I dislike going to the doctors, I dislike hospitals, I am definitely not a hypochondriac and I KNOW I do not have fibromyalgia. 3. Would those of you with this cancer share with me your thoughts on my situation? During February, my condition was so aggressive I began to put all my life affairs in order including visiting the funeral home - that's how serious this was. At this point I am not sure what to do.

I appreciate you reading such a long post as well as any advice or thoughts you would be willing to share.  

jorola

In my honest opinion...(not a doctor either)

 

to answer your questions, please recognize I am not a doctor so I am giving you my non medical opinion but I do work with injured people reading medical reports and speaking to medical professionals everyday in my work)

 

1. No, 2. No, 3. I am a caregiver but have been immersed in the world of cancer for nearly 5 years now and researched significantly, it is unlikely if it was cancer that you would get better after symptoms such as you described.

 

 

The symptoms you described do suggest, again I am not a doctor, frozen shoulder. Did they manipulate your arms so they were about your head for the CT scan? If yes that could have been enough to help break it and start things moving again. I say this as someone who has had and currently has frozen shoulder as well. Have you had any injury to your shoulder? An injury to the shoulder is not necessary to develop frozen shoulder though. Your other symptoms can possibly be a manifestation of the severe anxiety you are feeling. These symptoms are very real to you I am not denying that.

 

You appear, in my opinion, to have convinced yourself you have cancer. To the point you were planning your funeral. I really think you have severe anxiety happening here which has taken over this situation. Honestly if you are still concerned get a second opinion. But realize even if something shows up on a CT scan that still does not mean it is cancer. Only a biopsy can confirm the presence of cancer. You also need to have a doctor you have trust in or no matter how much the objective testing shows you do not have cancer you will not trust it.  I get you live an hour or so away from a city. Up here in Canada that is very common. Do some research on doctors near enough to you that are taking patients. From there maybe you can find one you can develop a good working relationship with. However have you sat with the first one t go through the CT scan results? Talk about how you feel about them, how you feel now? Maybe they can help explain things that will answer the questions you have. I strongly encourage you to discuss the anxeity you are having about all of this at minimum.

 

No findings is a good thing. May you never have findings and have to travel this ugly heartbreaking road.

Jodie