PANCOAST TUMOR

[shelly2998]

I was wondering if I could talk to or hear about stories with someone that has had a pancoast tumor and had it removed. I was 38 when I had my 6cm tumor removed. It has now been 1 1/2 years since surgery. I also had 3 ribs removed. I just want to know if someone is encountering the same pain down my shoulder and arm that I am. I just went to my primary Dr. today and he stated I need to see a Neurologist. Just wondering what others have encounted out there with this.

I am new to this website and think it is great.

[Shelley (MLC)]

Hi Shelly, I know you'll be hearing from a couple of our members soon that had pancoast tumors. They will be of much more help to you. I just wanted to say hi and welcome......from one Shelley to another. Good luck, you've found a wonderful site. You'll find all kinds of support and information here.

Shelley

[Donna G]

HI Shelly. Boy I was just thinking that I should call a "meeting" of the Pancoast tumor survivors at this site. My story is below, you can just click on it. Having a tumor in the apex of your lung does cause special problems. My shoulder is not really a problem for me. I hate to complain about anything now considering I am cancer free and it has been over 11 years since that day the Doctor said " I am sorry to tell you but you have lung cancer"

My ribs never healed from the surgery so thats tender at times. I had lots of chemo and Cisplatin can and (did for me) cause Neuropathy in my hands and pariticularly in my feet but considering I am a nurse and am on my feet for 8 hours running up and down the halls I am doing OK.

Mary Ann and Kasey had it involve ribs they may be able to help you more. I am also hoping that Rita, Laurene, Relyag, Tracy, Rocco, Keith BUbb Grammy bear, all check in with you.

Keep us posted

DonnaG

[ginnyde]

Shelly,

Both Kasey and Donna G. are Pancoast tumor survivors. You might want to pm one of them. I hope you get some relief.

[Bruce u]

Hi Shelly

I cannot answer your questions but just wanted to welcome you to this great site. Members here are very knowledgeable and I'm sure they will be more than willing to answer your questions. Please keep us updated. Take care.

[Kasey]

Welcome, Shelly.

I was dx with a pancoast tumor in Sept. '04 and had surgery Jan. 05. So depending upon WHEN one considers survival begins I am either a 4 or 4-1/2 year survivor. My surgery was probably quite different than what you had. I know I haven't found one pancoast tumor surgery done the way my surgeon did it. Mine was very involved and I was actually turned away from 2 major comprehensive cancer centers after the original dx made here in my hometown. So I am a very lucky lady.

Now as to shoulder and arm pain ~ yes, I have both. What I am not sure of, though, is if it has to do with the tumor/surgery or the cervical stenosis I also have. My shoulder and shoulder blade ache and it does go down my arm. Sometimes my hand aches as well. My hand gets very cold ~ so cold that sometimes I even wear a glove inside to try to warm it up. Once it gets that cold it just aches from the inside out.

I don't know if any of this helps you or not. Just as Donna mentioned, I just go on with whatever I've got. I think pancoast surgery does causse some difficulties that other LC surgeries do not just because of tumor location. I would advise you to check with your doc and maybe get a scan ~ I got an MRI of the cervical spine ~ to rule out anything 'nasty' that begins with the letter 'c' if you get my drift.

Donna mentioned several panoast tumor folks who have posted here in the past. I know there is still one of them who posts on a different board now. I even tracked Rocco down and discovered he lives only an hour away from me and has been out there living large for many years now.

Hope you get an answer for sure, Shelly, and hope also that you know how excited Donna and I get to meet another 'pancoast' buddy.

Kasey

[Flyman35]

Hi Shelly. I don't have any answers for you I just wanted to welcome you aboard. Keep us posted on how you are doing.

Denise

[dadstimeon]

Hi Shelly and welcome. Rich

[catwomen]

shelly, I just read your post from a few weeks ago and wanted to reply. I had a pancoast tumor removed a year ago. I also had three ribs removed. I still have a lot of pain in my upper back, and right arm. I also had chemo and suffer from nerve damage in the right hand and arm and both feet.I just ask a question about pain a few days ago. I was wondering if anyone still had pain and was still using pain meds. Just wanted to let you know I'm out there still having pain in my arm. Also just had test this week still all clear.Thankful for that. Lori (catwomen)

[LadyLyn7]

I don't see any recent posts regarding Pancoast tumors.  The 2009 posts that show here are helpful but is there anyone on this site that is currently dealing with Pancoast tumors, recovering, or a survivor? 

I have been dealing with horrific shoulder pain going down the inside of my arm and through my collar bone but nothing showed up on 2 different MRIs of my shoulder.  My doctor is sending me to an orthopedic doctor.  My daughter sent me an article on WebMD about Pancoast Syndrome and the description of the symptoms are exactly what I am enduring in my shoulder.  The pain was so intense last night and this morning that I left my doctor a message asking him to look into Pancoast Syndrome as a possibility.  I might add that NOTHING relieves the pain.  I've tried aspiring, Tylonol, Ibprofin, Aleve, and a heavy duty prescription equivalent to 2,000 mg of Ibuprofin.  I don't like prescription narcotics (opiods) because my husband died from extensive use of opiods but I have a feeling I may have to take something like that if this pain continues to get worse.  I believe that time is an essence for my diagnosis and I'm hoping my doctor will listen to me and do what is necessary to at least rule out Pancoast tumors.

First off I would love to hear from survivors of this disease and possibly get more information in case I need to push my doctor for tests.  

Thank you,

Lyn

[Donna G]

Hi Lyn.

If you read these posts  - you read my post above.  I had a Pancoast tumor in the apex on my R lung pressing on nerves going down my arm and on my chest wall. So I had pain in my chest and down my arm.  I thought it was an orthopedic problem but the doctor in the clinic after ruling out it was not from heart problems did a chest x ray and saw a tumor a little bigger than a golf ball on the x ray.  

Are you saying that the doctors do not suspect cancer ? The doctor did not order an x ray ?  You can read more at the site I listed down below.  

I am fortunate to be a survivor for 21 years !  I am so grateful that it was diagnosed and treatment started right away.  

Keep us posted.  

Donna  G

[BridgetO]

Hi LadyLyn and welcome,

I'm sorry to hear about the pain you're having. I hope Donna's post was helpful to you. I suggest you advocate with your doctors for a chest xray if one hasn't been done yet. Best of luck and keep us posted.

Bridget O