Pancoast cancer

[Heather Hawkins]

Hi I've stumbled across this site . I'm needing help getting my head around the fact my husband has been told he's has Pancoast cancer tumor. 

Well he was admitted into hospital last Monday as he was in terrible pain  . Shoulders arm numb hand and a lump on his neck his 63 non smoker fit as . 

So this is all a shock. He's starting treatment tomorrow radiotherapy for 3 weeks then chemotherapy . Unfortunately due to Covid I wasn't allowed into the hospital.

So I never got to speak to his Dr . 

I get the feeling he's not telling me everything. Well I'm terrified for him and myself and feel selfish and guilty !!! 

 

Please if anyone can help I'd be interested in hearing for anyone .    

 

Heather 

[TJM]

Welcome Heather. Very sorry to hear about your husband's diagnosis.

You have come to the right place. Others will be responding to your post soon enough.  One of those is named Tom G and he was diagnosed as stage IV with the same exact diagnosis as your Husband. That diagnosis was made 17 years ago. I will let him comment on the actual tumor but I just want you to know that there is a lot of hope out there.

Myself, I have Large Cell and was diagnosed 14 months ago and am currently in remission (called NED in the cancer game. No Evidence of Disease).

I really hate that COVID means you cant go with him. It is wrong IMO. Hopefully we are near the end.

There is so much to be hopeful about today compared to years back. Many more treatments, better drugs for side effects and much better outcomes. Plus there are a lot more coming.

Could you tell us a bit more about the cancer. What stage, how big, has it metastasized and what exact treatment he is on? Someone here has most likely been there and done that.

Enough for now. Again welcome. Try to relax and not stress to much. I would also suggest reading some of the older posts. Just cruise around and get a feel.

Peace

Tom

[LexieCat]

Hi, Heather,

Sorry for your husband's diagnosis--nobody wants to hear s/he has lung cancer. 

Pancoast simply describes the location of the tumor--in the upper part of the chest--not the type of cancer. From what I understand, pancoast tumors can cause pain because of their location--they commonly press on the nerves--hence the arm pain.

The radiation treatment he's getting first should shrink the size of the tumor fairly quickly. Hopefully that will relieve his immediate pain. Once the pain is under control, the rest should fall into place. I hope you can talk to the doctor soon. The important questions are the exact type of cancer (usually determined by a biopsy) and the stage--which indicates how advanced it is. You should know that there are people here with advanced cancers that are 15-20 years out from their diagnosis. Lung cancer is still very serious, but with new treatments, he could be around for a long time. It's important to have tissue samples tested for molecular/genetic markers that will indicate whether he can benefit from a targeted therapy. 

Welcome--glad you found us.

[GaryG]

Hi Heather: Welcome and sorry about your husband. It is difficult to make a reasonable comment unless one knows more details. Almost every hospital ha an online portal these days where the doctors describe in details the  type of cancer and the plan going forward.  Family members are normally allowed to  have access. I wish you the best.

[Donna G]

Hello Heather.   I have somethings in common with your husband.  I had pain from the tumor 

pressing on nerves .  I was diagnosed with the Pancoast tumor  Stage 3 B .  I started treatment quickly.

They gave me daily radiation and 2 chemo drugs.  If you look below you can see where to find my 

whole story. 

Just a side thing I come from  " New England "   growing up in Boston , Massachusetts ..

Please keep us posted on how he is doing .  I pray he does as well as I have . I have survived for over 24 years.

Donna G

[LouT]

Heather,

Welcome to our club and sorry you need to be here.  As you've already heard there are more treatments added for Lung Cancer in the past 5 years than in the previous 20 so your husband can have a good chance of overcoming this disease.  Surely you'll be hearing from others soon with even longer periods of NED (No Evidence of Disease) since their diagnosis, but in May of this year I will be two years out from my LC (lung cancer) diagnosis and surgery.  So, stay strong and let us help you by sharing our experiences.

Lou

[Marney]

I was diagnosed with a 9 cm Pancoast tumor in October 2020, a rather rare form of lung cancer located in the apex causing indescribable shoulder pain.  The first Pet Scan showed destruction of the 2nd and 3rd rib with a fracture of the 2nd.  My first treatment plan was radiation five days a week at the same time with chemo, Taxol/Carboplatin, once a week.  After the third radiation treatment the pain disappeared overnight.  

 

Five weeks into radiation I was suffering with burns and my blood counts were dropping from the chemo drugs.  My Oncologist decided I needed a month off treatment to recover.  Last week he put me on a chemo immunotherapy Keytruda treatment once every 21 days.  At this time I asked about the possibility of another Pet Scan.  He agreed and made the appointment with radiology.

 

Today I met with the Radiologist for results.  He handed me a copy of before and after scans and the tumor is gone except for one tiny speck on the scan..  He said “The only way I can describe this is as an absolute miracle”.  

 

I live alone but I came home and told my dogs I may just out live them preventing them from becoming orphaned.  They seemed especially glad to see me so I suppose they understood.

 

Here is my advice...Everyday I found something to be grateful for...I am so glad I am not nauseous, so glad I am not suffering with joint pain, so glad my radiation burns are healing, so glad I have confidence in my doctor, etc.  DON’T ever allow yourself to anticipate anything negative.  
 

Marney

[BridgetO]

Hi Marney and welcome here! It's great to hear treatment success stories like yours. Thanks for sharing it with us. It will definitely encourage others to hang on through difficult treatment.

Bridget O

[sammyharvard40]

Hi there

 

my name is Jo. I think I’ve got a pan coast tumour. Weird I’m sure I hear you say. Let me tell you my story

 

so about 4 years ago. I started having some very strange symptoms. I’d only sweat on one side of my body. One eye wouldn’t constrict correctly and was a different size. No one could work out why I was getting these strange symptoms. After 3 whole years of ‘it’s all in your head’. I finally got sent to the only hospital who dealt with this weird autonomic disorder

 

wrll. For the last 4-5 months. I’ve had this shoulder pain. The last few weeks it’s been excruciatingly excruciatingly indescribable pain. I can’t sleep. I can’t rest. I can’t walk. I can’t stand. I can’t sit. I can’t lay. 
 

my dr kept saying it was a torn rotator cuff. But I knew it wasn’t. I tried so hard to get someone to Listen to me. 
 

finally. Today. My physio told me it’s nothing muscular. He says there is something there. My symptoms are the same as a patient he had with a very rare lung tumour. Now because of my one sided sweating. I’ve heard about pan coast tumour. My drs said if I sweated on the right hand side. Then my problem will be on my left hand side of my body and this is  they told me I’m to immediately tell them that  

 

im almost certain it’s a pan coast tumour. I’ve got 2 young children. I’ve already been diagnosed with quite a few very rare disorders. I had a gut feeling I knew what it was and I was right every single  time and I believe I am this time

 

does the shoulder pain get better?!? Please. Someone. Please tell me it goes away. Even the narcotic type drugs don’t touch it. 

[LouT]

Hi Jo,

Hopefully folks will see this as it is buried in another post, but let me say a few things.  First, welcome to the forum and I'm sorry you have to be here.  Second,  I can appreciate that your doctor may have misdiagnosed your condition, but we cannot jump to a conclusion of cancer without some good and complete diagnostic work.  A doctor will order things like;  CT Scans, PET Scans, Biopsy and Biomarker Testing... once all ordered tests are done and reviewed only then can you determine cancer as the problem.  I can understand that lung cancer can often mimic other things (allergies, pneumonia, etc.) but you need to be very careful about making an assumption of cancer without the appropriate testing.  Please take steps to get the testing as soon as possible and feel free to come back here with any questions you have about the tests and doctor-reported results.

Lou