Hello all. I just joined GRACE while trying to gather information and it seems to be a really good site.
Now my disclaimer: I know self-diagnosis is the bane of every professional here, as well as those who are dealing with real issues. I don’t want to be “that guy,” however, I have to admit my concerns are now pushing my anxiety over the edge.
I’ve read here, as well as lots of other sites, about pancoast tumors. Of course, what is out on the internet today will make people think they are dying to due a mild inflammation half the time. What I would like to know about are REAL LIFE situations and symptoms.
I’ve read all over about “pain in the shoulder” symptoms that can radiate down your arm. I would like to know how and when did you first notice something was wrong, pain intensity levels, what the pain felt like, how persistent (did it come and go), locations of the pain, breathing issues, etc.
I hate to ask this when there are so many people out there dealing with waaay worse situations that me. However, I think if I, as well as others, got real life info from those dealing with this, it may help alleviate the internet cancer anxiety.
Take care to everyone out there!
Tue, 06/21/2016 - 09:54
Welcome to GRACE. I'm sorry if you are experiencing the type of shoulder and arm pain that is associated with a pancoast tumor. I have not been afflicted with such a tumor, so I can't describe symptoms from a first-person perspective, but I will try to offer some insights.
The type of shoulder/arm pain produced by a pancoast tumor is much more likely to be caused by other ailments. This is especially true for younger patients (certainly patients in their 20s and 30s) and persons without a significant smoking history. In a podcast, Dr. Vallieres describes the typical scenario reported by patients as "enormous pain around their shoulder and down their arm, sometimes some changes in their facial expression, who had, on x-ray, a tumor at the top of their lung." - http://cancergrace.org/lung/2015/09/11/gcvl_lu-e06_pancoast_tumor_histo… As with most cancer pain, it is unlikely to come and go or vary in intensity. Rather, it is more likely to be constant and increase in severity over time.
It's important to note that a pancoast tumor usually shows up on a chest x-ray, and certainly on a chest CT. Although I do not know your age or specific symptoms, as you stated it is often unproductive to attempt to self-diagnose based on internet searches, and as Dr. West has said:
"I think a Pancoast tumor may be the most over-internet diagnosed problem in the cancer world — at least lung cancer. It is extremely common for people vanishingly unlikely to have a Pancoast tumor to scare themselves half to death by a Dr. Google diagnosis. It is overwhelmingly likely that you do NOT have a Pancoast tumor. And while a chest x-ray is a very old technology and CT is better, a chest x-ray would be sufficient to all but prove that it ISN’T a Pancoast tumor." - http://cancergrace.org/topic/very-scared-of-pancoast-tumor-please-any-a…
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Tue, 06/21/2016 - 10:04
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I will add that I've been active on GRACE for 8 years, and the type of question you post is not uncommon. In that time, I can't think of a single case of a person who is unlikely to have a pancoast tumor and whose imaging has not revealed such a tumor but later has returned to the site to report that diagnosis. With that in mind, if you get (or already have) a chest x-ray or CT report which does not reveal a pancoast tumor, I would feel reassured and turn my attention to other possible (and less concerning) causes for your pain.
I hope you can find the diagnosis and treatment which will resolve your symptoms.
Tue, 06/21/2016 - 12:30
Thank you VERY much for the reply.
My background: I am 39 years old and I am a former 1 pack-day/21 year smoker. I’ve been experiencing off and on left scapula tingling/numbness/pain for several years. In addition, an area from my left armpit and above my left nipple, following underneath the edge of the pectoralis, will get an intense burning sensation that just will not go away. Recently, I’ve been getting an ache-like pain in my shoulder, elbow, wrist and middle/ring fingers. These sensations have been so bad I’ve went to the ER three times over the past 4 years due to thinking it was a heart issue (My identical twin brother had a heart attack at age 31 and my dad died at 57). During my June 2015 ER visit; I had an emergency CT performed due to blood test results (flagged for blood clot in lungs). Per the CT results and a visit to a pulmonologist, I have mild emphysema and non‐specific cystic lucencies at the left upper lobe. PFT all came back within normal ranges. I tried to ask the pulmonologist about this pain and he essentially brushed me off.
Recently, I changed pulmonologists and I am now getting another CT scan in July. Nothing was found on x-rays last week. I spoke with my new doctor and he stated since nothing showed up in the x-rays, I shouldn’t be too concerned, but a new CT scan will be able to see more. I not too for sure why he ordered one with no contrast though.
Like I previously mentioned, some of the description like shoulder pain are very arbitrary. Better descriptions such as "falling down sharp agonizing pain" or "constant dull ache that would get worse as the day progressed" would be nice.
Tue, 06/21/2016 - 12:47
The additional information you have provided suggests that there is an essentially zero percent chance that you have a pancoast tumor, based on your age and the fact that you have had these symptoms for several years despite nothing showing up on more than one scan. Any pancoast tumor large enough to have caused these symptoms not only would have appeared on initial scans but would by now have grown and likely metastasized.
Tue, 06/21/2016 - 13:44
What is sounds like to me is pinched nerves. Either in the neck or spine. Have you see an orthopedic doctor?
They'd be the first ones to deal with pain in those areas. I went through something similar and saw many doctors and had many tests. Mine was two pinched nerves in my neck. I saw a chiropractor and have had no problems since. Take care, Judy
Wed, 06/22/2016 - 11:39
Thanks for the replies and info you have provided!
I guess I should also clarify a few things. I've had scapula numbness off and on for a few years. It would typically manifest after having a cigarette, then go away. However, at times, the left pec burning and scapula tingle would remain for a few weeks, then go away. Now, the pain, numbness and tingle is there constantly and has increased in intensity ever since when I fell off the cigarette wagon back in March this year. I stopped in May, but the pain is still here.
My rationale part of my mind figured it is not likely be a tumor, but I just wanted to get some real world comments of peoples experiences with it for comparison. JimC - What you provided about some people having “enormous pain around their shoulder and down their arm, sometimes some changes in their facial expression, who had, on x-ray, a tumor at the top of their lung" is A LOT better description that just "shoulder and/or back pain" that is so often used.
cards7up - I am getting an EMG test in July as well (after my CT scan). I've been to a neurologist last year regarding this issue, but they never got back to me for a follow up. Very frustrating.
Wed, 06/22/2016 - 14:29
As already mentioned, cancer pain does not come and go but continues to get worse. And if this were cancer from a couple of years ago whether a pancoast or other tumor, you'd see it by now. It would have to be a good size and pressing on a nerve or other organ to cause pain. Hopefully further testing will get you answers.
Take care, Judy
Fri, 11/17/2017 - 13:25
Hello, I have been diagnosed with Horner's syndrome, 4 weeks ago I had a Head and neck CT scan and a Chest X ray, both came back without a sign of a tumor, my doctor has said he will see me in 9 months unless I notice anything new, but in the last 2 weeks I have started to get some pain, it isn't constant and it isn't always in the same place.
I get pain on the outside of both my arms,
I get what I feel is a stiff neck both sides when I turn my head and
pain in both my thumbs,
I also get an itch, this again is in both arms
I don't know if it is because I am thinking about it or if it is an actual sign of a Pancoast tumor
I can't find anything online that tells me if symptoms are located on just one side of the body or on both.
I am a 61 year old male
Sat, 11/18/2017 - 08:05
Welcome to GRACE. I'm sorry that you are experiencing these symptoms, but it's extremely unlikely that they are caused by a pancoast tumor. First, you have had scans which have not revealed the presence of such a tumor, and any pancoast tumor which is causing the type of symptoms you describe is going to be imaged. In addition, a pancoast tumor that causes arm, shoulder and/or neck pain does so because it puts pressure on bodily structures near the tumor, so that wouldn't cause pain or discomfort in both arms.
Thoracic surgeon Dr. Edward Vallieres described pancoast tumors in his podcast:
"There’s a particular tumor called Pancoast tumor, or superior sulcus tumor. Pancoast was the name of a radiologist from Philadelphia who in 1932, and this is way before we had CAT scans, so this is on a plain chest x-ray, described individuals who showed up with enormous pain around their shoulder and down their arm, sometimes some changes in their facial expression, who had, on x-ray, a tumor at the top of their lung. Basically what it means is a tumor that’s not only involving the lung, but involving the structures at the top of the lung, which happen to be the ribs and the nerves that come out of your neck and go down into your arm, and also some vessels that come out. So, it’s a very busy area up here, a very tight area – there’s not a lot of room for growth there. And so that’s what these Pancoast tumors or superior sulcus tumors are — they are tumors, regular lung cancers, but it’s their location that defines that we call them that way, and the fact that they are invading these structures."
While this is not likely a pancoast tumor, new symptoms should be reported to your doctor so that he can decide whether additional follow-up is warranted.
I hope you can find an answer and get symptom relief soon.
Sat, 11/18/2017 - 10:58
Thank You, Jim
I am worried as you will know, but that has set my mind at rest, knowing Pancoast tumors only affect one side is a relief, I was unsure if I should be having a Chest CT scan, for too much reading online that is one disadvantage of google :roll:
I think maybe if I just relax these pains might go away
Wed, 03/07/2018 - 16:20
the pain continues to get worse, I have asked for a CT scan and while I wait I have another question
my first symptom started last July, would I have more symptoms 9 months down the line, would I be losing weight, would I be in severe pain or is a lung tumor a slow growing cancer
I think I'm ill my Doctor who isn't a cancer specialist thinks after reviewing my notes that this could be just a vitamin D need
Wed, 03/07/2018 - 19:16
I'm sorry to hear that your pain has increased. It's not possible to make a sweeping characterization about a particular instance of lung cancer. As a rule, such tumors tend to grow over time, but tgey can do so at a wide range of rates, some very slow and others quite aggressive. The same is true of symptoms.
A CT would detect or rule out a pancoast tumor, but it's not surprising that your doctors are looking for another, more likely cause for your symptoms. I hope they can find answers and solutions for you soon.
Sat, 01/08/2022 - 05:18
I decided to register to help these people.
To the person who was diagnosed with Horners. You are very right to be worried about a pancoast tumour. One sided facial drooping and pupil problems which is horners. Is commonly due to a pancoast tumour. I’m glad your drs checked you for one. It would be on the other side to your horners. To the person who relied to you about the pain is wrong. Horners is well known to be associated with a pancoast tumour.
To the man above. My pancoast tumour. Gosh. The pain was EXCRUCIATING. It was the kind of pain where you can’t watch tv. You can’t slee you can’t read a book. You can’t drive. Because all you’re thinking about is this excruciating pain. Mine was better in the morning and got more and more excruciating painful as the day went on. Meaning the evening and nighttime was the worst. It was like the most painful ache. I wanted to hold my arm all the time to take the pressure of my shoulder. But even doing so did nothing for the pain. I had FULL range of movement. Which put out most other shoulder problems. Like rotator cuff or pinched nerves. As soon as I saw a physio he knew h
It was a medical reason. Not a problem with the shoulder as such. I also had a face which would randomly droop. I got tested for horners and it came back normal. But with parasympathetic nervous system ocular paralysis. I eventually started to sweat one sided. Which sent me to a neurosurgeon. Who eventually diagnosed it.
I can answer any more questions
Sun, 01/09/2022 - 17:25
Hi sisqidiva, Welcome to Grace. How are you? Thank you for responding and being willing to help! We've not had many people share personal experiences about pancoast tumors and there are several differences about this type of nsclc that most people don't know. I joined Grace after searching for info on pancoast in 2009 and found the 3 article series by Dr. West on the subject. It was the best result on the web that contained pertinent expert info on the subject written specifically for laypeople, so I kept rereading until I entered the forums and I'm still here.
Gosh, I find myself searching for appropriate language sometimes when a good f, g, d, or s word would be more appropriate when describing EXCRUCIATING pain that keeps people from doing anything or finding any way not to focus on it. Too, you mention holding your arm to take pressure off your shoulder. These are all explanations that we should use more often because we do get so many people finding us while looking for reasons their pain moves down their arm.
My husband had a pancoast tumor that was very slow growing and wasn't pointed to it on an MRI (looking for an ortho reason for the E pain) and hid behind bone on a chest x-ray. Usually, pancaost tumors are faster growing and would be picked up on an MRI if it's pointed at the tumor. As you know unusual and rare are typical...it took me a while to sort out that oxymoron about cancer plus, everything DEPENDS on something else individual to that person. And stats go out the window when focusing on the individual because...it depends.
What Jim said wasn't wrong, while it's not impossible to have pain down both arms and have a pancoast tumor it's even less likely that that pain would be the same on both sides. A chest CT is the thing to catch a pancoast tumor when the pain got worse like where Harry was heading the last we heard. There are so many things are possible and that's why it's good to have more heads in the discussion. We like having conversations that make us all think and to especially share and add to the knowledge pile that is ever deepening sea of knowledge and experience.
Hope to hear more,