pancoast tumor?

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February 7, 2013 at 4:46 am  #1253505    

guidanceplz

I developed symptoms of Horners Syndrome 5 years ago. The pupil in my right eye became smaller. I read up on the subject and went to my primary care physician and asked him to do a chest x-ray to look for pan coast tumor, i do have a history of smoking. His nurse did one in the office, and my doctor says he didn’t see anything on the x-ray. He also ordered a MRI of the head with negative results.
As time went on, the symptoms of the Horner’s syndrome has worsened. I now have ptosis of the right eyelid and an absence of sweating on that side of the face.
A week and a half ago, I developed pain in my right upper back. The pain developed overnight and will not go away. It gets worse when I lie down. I feel the pain is between my spine, neck and right scapula, I am also noticing pain referred to my right shoulder.
I did not do anything to my back, and I decided to look online to see what this pain could be and found pancoast tumor.
So now I am concerned. I made an appointment with my doctor and asked him if he could order a CT. He ordered the CT, but put on the order that the reason was ‘cough’. I feel as if I am having to chase this diagnosis, and my doctor thinks I am a hypochondriac.
He says the CT came back normal. But did the radiologist know what he was looking for? Why didn’t my doctor put on the order ‘possible mass/tumor to right upper lung or something to that effect. He said he didn’t think insurance would approve the scan and that’s why he put cough. Why? Are my symptoms not indicative of possible pan coast?
My back pain is still here, and I still believe there is possibly a tumor. I have subsequently read that an MRI, not CT, would have been there better test for this as the CT has a rate of something like 40% false negative.
Should I be concerned, or should I let this go? No don’t have the money or expertise to figure this out on my own, and my symptoms do still point to lung tumor.
Please help.

February 7, 2013 at 8:11 am  #1253509    

Zemswife

I am not a doctor, but I can give you what my husband’s experience was when they found his pancoast tumor and Horner’s syndrome.
He had pain that radiated from his chest to his left arm and we thought he was having a heart attack, so we went to the emergency room. An x-ray was done and the tumor was noted. It was approximately 2.5 x 3 cm. Follow up CTs and PET scans were done to confirm. The Horner’s syndrome became apparent about a month later.

Horner’s syndrome from what I understand is caused by the nerve getting pinched that controls this area on the face. I wonder if there could be some other reason for this besides a pancoast tumor? X-rays are not known to be as accurate, but I would believe if there was any kind of a mass in your lung, that a CT would have caught it.

Louise

February 7, 2013 at 8:40 am  #1253513    

guidanceplz

Thanks Louise, I appreciate your response.
From What I have read, the CT is not the test of choice for pancoast detection, but the MRI is. The CT scan as a 40% false negative result.
The pain in my back is different from any pain i have ever felt. It is definitely on the right upper side, where the top of my lung is. This is the same side as my horner’s syndrome.
I have had cancer in the past, and my brother passed away from cancer in 2011.
My Horners syndrome has to have a cause. I am concerned it is a Pancoast tumor, due to the symptoms really point to that. But I just feel like the physician is not trying to get to the bottom of it, I have to ask him for every test, and I’m not a medical professional so I don’t know what steps or tests to take! I am frustrated and feel so out of contol of the situation, as I know early detection is so important. But I don’t have the money to go from doctor to doctor, tyring to figure out what to do. My deductible is $5000. And it is only February.

February 7, 2013 at 9:14 am  #1253515    

guidanceplz

BTW, I am in my early 40s, female

February 7, 2013 at 10:34 am  #1253522    

catdander forum moderator

Hello guidanceplz, On a hopeful note 5 years without any other symptoms overwhelmingly points to something other than lung cancer, especially the type that normally cause pancoast tumors. The 5 year mark is often suggested as how long a person is likely to live with lung cancer. So having a symptom like horners with no other evidence of disease just doesn’t point to lung cancer.

It doesn’t matter what the doctor puts on the order for the CT scan, the radiologist who read the scan reads everything about the scan no matter. It’s interesting what you say about using an MRI to detect a pancoast tumor. My husband went through many hoops including 5 weeks of painful physical therapy after an MRI showed only inflammation and missed the tumor completely. A CT picked up the tumor. I often wondered if it had more to do with what was scanned that the MRI was able to miss my husband’s tumor.
What the MRI is good for in pancoast is detecting the extent to which it’s moved into areas such as brachial plexis, spine, places that will show nerve involvement. But that is after a CT has shown the tumor exist.

A chest CT isn’t likely to miss a lung tumor that is causing pain. I think what is meant when suggesting an MRI is needed for pancoast tumors is for finding the extent of damage not for picking up an existing tumor. CT scans are the scans of choice they are extremely sensitive.

Has your doctor suggested any alternatives to your back pain. There are countless reasons for such problems. The earlier you find and solve the problem the more likely it is to be completely corrected. A visit with an orthopedic may be helpful.

And finally, a second opinion on reading your scan may help put you at ease.

I’ll make sure Dr. West sees this thread to make sure I’m not so far off the mark. I hope I’m not, I hope you can find the reason for and eliminate your back pain. And mostly I hope the worry is for naught and you are able to put it behind you.

Janine


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 8/14.

February 7, 2013 at 10:55 am  #1253525    

guidanceplz

Thank you, I really appreciate you addressing all of my concerns:-) :-)
I’m so sorry about your husband having to wait so long.
I am so very attuned to my appearance..putting make-up on every single day. I believe this is why I detected my Horner’s, if you looked at me, you wouldn’t be able to tell. My pupils are naturally small, and the ptosis is there, but there just is not much droop. The lack of sweating is over my lip. It is like a line is drawn under my nose, and I have sweat beads on the left, and nothing on the right.
I went to a neuro-opthomologist 5 years ago and he did confirm the Horner’s, but it was too early at that Tim(he said) to determine the origin of the lesion. I had only had horner symptoms for about 10 days prior to that. Incidentally, my horners began with 3 days of a red painful eye with a scratchy feeling. Don’t know if that is common.
Sometimes I wonder if maybe pancoast victims do have the beginning of Horner’s long before they notice it? Like i said, my horner’s is hard to tell, unless you’re looking for it.I believe that once the pain is bad enough to see a doctor, the survival rate timing starts at that point. Now that I am beginning to have pain, I want to figure this out very soon.
Yesterday and today my right hand is cold, my left hand is normal.
My doctor has not followed up regarding my back, so again I will have to make another appointment, pay for another doctor visit and feel nervous the whole time because I am ‘bothering him. At least that us how I feel.
My pain is not that bad yet, but it is there, and it feels foreign, if that makes sense…there is something there.
Thank you so much for your info about the CT, that really does help a lot!

February 7, 2013 at 12:02 pm  #1253529    

catdander forum moderator

My understanding is that lung cancer moves at such a rate that without treatment it usually is fatal within 5 years. The reason it’s so often not found in time to cure the person is it usually doesn’t cause symptoms until it’s metastasized making it incurable. With pancoast it becomes a different issue. It usually causes pain early in the process due to the tumor’s position in the apex of the lung. Pain starts in the shoulder and moves down the arm often causing the person to need to hold the elbow to relieve the pain. This is good because the cancer is found in an earlier stage than lung cancer otherwise. There are many other reasons why a person has this type of pain. I have fused discs in the neck that cause very similar problems from time to time but a few sessions of yoga usually fix that.

Here is a link to a thread asking about pancoast tumors. Dr. West answers with a link to a list of blog/posts on the subject. I found Grace by reading and rereading these articles. Note that he states that diagnosis for pancoast is the same as for any lung cancer.

http://cancergrace.org/forums/index.php?topic=256.0

This is a post by a pulmonologist about work up of lung cancer. http://cancergrace.org/lung/tag/lung-cancer-work-up/


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 8/14.

February 7, 2013 at 3:31 pm  #1253542    

guidanceplz

Thank you very much for by our help :). the best to you and your husband..

February 7, 2013 at 6:16 pm  #1253545    

cards7up

Horner’s Syndrome and even Pancoast Syndrome have other causes besides Pancoast tumors. And as already stated, the radiologist reads the entire scan so would notice a pancoast tumor. Have you thought about going back to the neuro-opthomologist? Since it’s been 5 years, if it had been a pancoast tumor then it would’ve been seen by now. Is there anything that relieves your pain? Wishing you the best.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011. Local recurrence, surgery to remove LRL 8/29/13. Chemo carbo/alimta x3.

February 7, 2013 at 6:33 pm  #1253547    

guidanceplz

Hi Judy, yes my next step will be the neuro opthomologist. There are tests he can do to find out where the lesion is causing my horners. It won’t give a specific location. But can tell me if it 1st 2nd or 3rd neuron. Pan coast is 2nd.
I know I may seem to be reaching, I was told when I was 21 that there was a ‘spot’ on my lung by a nurse after I had an xray for possible pneumonia. I did not know what that meant at the time so I didn’t ever question it, and no doctor ever said anything to me. I still don’t know what it means. I do know that pancoast grows very slowly..
I will get a 2nd opinion on my CT, for my own peace of mind, if the neuro-opth finds the lesion is 2nd neuron.
The last cancer I had in the past wasn’t text book, i noticed minute symptoms that were indicative of the cancer i had 2 years before i was diagnosed. I didn’t know what the symptoms meant, so i never sought medical attention, and only later found that my symptoms were indicative for the type of cancer i had, so I am wary.
Thank you for your suggestions, Judy, I really appreciate everyone’s input here.

February 7, 2013 at 8:51 pm  #1253557    

Dr West

Everyone here has provided great comments. It’s extremely hard for me to believe that someone could have a ptosis for 5 years related to a Pancoast tumor, which would not be a subtle finding if it were the cause of symptoms going back 5 years. I also don’t believe it’s true that there is a false negative rate for Pancoast tumors on chest CT if read by remotely competent radiologists. Pancoast tumors are typically quite big enough for a non-radiologist to see from across the room, looking at a computer monitor showing the scan. And while not impossible, early 40s is quite young for a Pancoast tumor. Possible, but now there are at least 3 factors that would each make a Pancoast tumor extremely unlikely. Far more likely is that you don’t have a Pancoast tumor.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

February 17, 2013 at 8:07 am  #1253868    

Ronda

I just wanted to chime in here, I was diagnosed with a Pancoast tumor, Sept. 2011. I had very bad pain, worse than child birth that would start at my shoulder area and radiate down my right arm. I was 45 at the time. Horner’s is what got me into the fast tract of diagnosis. Mine has always been visible on an x-ray and CT Scans. I have seen where they get missed on x-rays due to the location but have never heard of it being missed on a CT.

Good luck on with finding the cause!
Ronda

March 26, 2013 at 6:22 am  #1255138    

mindyl

I am scheduled to have surgery on April 17th for what my doctor has diagnosed as Thoracic Outlet syndrome.. I’ve been having other issues and wanted an MRI but haven’t had any luck getting one. my major issue with my arm is how cold my hand/arm get and the swelling. My hand will get purplish at times too. my arm will ache, but usually only when it gets really cold. My arm is defnitely not as strong as it used to be either and fatigues very easily. Quite frustrating. I’ve also noticed voice changes and a feeling that there’s something in my throat all the time. If I try to yell, my voice will cut out and people ask me all the time if I have a cold. My cheeks have been getting very red, almost looks like I have a fever but I don’t. I’ve also noticed that when I wear a sports bra or anything snug it feels like my circulation is being cut off in both arms. Feels hard to breathe so i’ll have to change clothes. I’m assuming that is related to the TOS? To be honest, i’m not really feeling good about this upcoming surgery…not really wanting to hack out a rib. I just have a bad feeling that these symptoms aren’t going to go away even after the surgery.
any suggestions? I’ve asked my surgeon for a pre-surgery MRI but never got a response. Haven’t had any blood work ordered either.
thanks!

March 26, 2013 at 11:38 am  #1255161    

catdander forum moderator

Hello mindyl, I’m sorry you’re going through such a difficult time. I sounds very painful. I’m sorry but our doctors don’t have an expertise in this type of situation. There patients come to them after a diagnosis of cancer.

One thing I can say is if you aren’t comfortable with the plan then a second opinion at a medical center with a specialty in this type of situation is very reasonable and most insurance pays for it.
This link is to Mayo Clinics pages on TOS. http://www.mayoclinic.com/health/thoracic-outlet-syndrome/DS00800/DSECTION=symptoms

I hope this is a little helpful,
Janine
forum moderator


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 8/14.

March 26, 2013 at 9:36 pm  #1255182    

Dr West

I’m sorry. Thoracic outlet syndrome isn’t something that oncologists really manage, so I’m afraid we can’t be of much help. I do agree that a second opinion could be helpful, especially if you’re wary about planned surgery.

Good luck.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

September 11, 2013 at 10:48 am  #1259200    

evey40

hi all where exsctly woud the paimbe ine startrd in shoulder then went down a mow at top of my back right side canr even lie om it so painfull this is goin on months

September 11, 2013 at 11:49 am  #1259202    

catdander forum moderator

These can be some but not all the symptoms of a pancoast tumor. With my husband as my only example I can say he didn’t have horners but he had added pain when the tumor destroyed a couple of ribs. So there isn’t a complete list to go by because as in all cancer cases, each individual is different.

Aside from cancer general symptoms such as malaise, fever, weight loss and fatigue, Pancoast tumour can include a complete Horner’s syndrome in severe cases: miosis (constriction of the pupils), anhidrosis (lack of sweating), ptosis (drooping of the eyelid) and enophthalmos (sunken eyeball). In progressive cases, the brachial plexus is also affected, causing pain and weakness in the muscles of the arm and hand (thoracic outlet syndrome). The tumour can also compress the recurrent laryngeal nerve and from this a hoarse voice and bovine cough may occur.
In superior vena cava syndrome, obstruction of the superior vena cava by a tumour (mass effect) causes facial swelling cyanosis and dilatation of the veins of the head and neck. http://en.wikipedia.org/wiki/Pancoast_tumor#Symptoms


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 8/14.

March 19, 2014 at 10:16 am  #1262856    

mmbvd7

This may be an old post, but yesterday I had a CT to show Pancoast Tumor. I had gone in for shoulder pain (started back around Christmas) that hadn’t cleared with my tried and true remedies (rest, cold/heat, massage, chiropractor) and thought that my bulging discs has actually herniated or *something* like that. The biggest thing that was different is the shoulder blade pain was much deeper. Also, had this hard pain in my left arm sometimes in the armpit, but mostly above the elbow and end of the elbow. The hand numbness has always been transient when my neck out of line, but this time, pinky and ring fingers staying numb.

I was thinking neck. My doctor was thinking neck. Had MRI and yep, three bulging discs, but also a “lung nodule”. The CT w/ contrast showed 4 x 4.5 cm. The next step is to get in and talk with surgeon and set up biopsy. That is next week (earliest appointment).

One of my questions is about work. I’m getting comments when I said I’m taking off the rest of this week. I am a nurse practitioner and I’m being 100% honest when I say “my head is not in the game”. I think I would be at risk because my brain is somewhere else….my own possible diagnosis, future, my kids, etc. Still feel *numb*, which I realize is normal. I think that is why I’m a little confused by texts from supervisor suggesting that I should work to keep busy!

I don’t think it is wrong for me to concentrate on my health, getting my family through this crisis, etc. Granted, the tumor has not been confirmed to be malignant, but the radiologist and physician seem to think so. I’m fairly logical, but I’m also human. Right now I don’t think I could give the focus that my patients deserve. Any feedback, support, opinions, etc. appreciated.

March 19, 2014 at 10:45 am  #1262857    

Zemswife

You are absolutely right to take this time for yourself. You have been dealt the possibility of having cancer. Everyone reacts differently. Some work because it takes their mind off of what is coming up; others like you need to take that time and absorb what is being told to you. No one can fault you for whatever decision you make because no one will ever know exactly how you feel, even if they also had a lung nodule in the same place and had the same job as you.
I hope your supervisor comes to the realization that you are making this decision not only the benefit of your mental health, but out of concern for your patients.

I wish you all the best.

Louise

March 19, 2014 at 8:27 pm  #1262863    

Dr West

I’m sorry to hear about what you’re dealing with. While some patients want to continue to work as a coping mechanism, many people feeel just as you do. I don’t think it’s too much to feel a need for some personal time under the circumstances.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

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