Pancoast tumor
Hi. My name is JP. I'm a 45 year old pancoast tumor survivor. Doctors, patients and survivors looking for information or support, I'd like to hear from you. Thanks.
Hi, I am not very familiar with Pancoast tumors. Is your lung cancer non-small cell or squamous cell? Hopefully others with the same diagnosis will join in on the discussion. Wishing you the very best, Alisa, LungCancer.net Team Patient Leader Hi Alisa. Thanks for your reply. It's non small cell. It sits in the apex of the lung. Extremely invasive and very difficult to diagnose. It took good doctors a year to find it.
Are you in treatment or do your doctors have a treatment plan in place for you to start? ~ Alisa
I've completed treatment.
Hi
. Glad to hear you have completed treatment. Thanks for raising awareness of this type of non-small lung cancer tumor. Permit me this opportunity to post for everyone out there this page which gives an overview of this type of tumor and treatment: https://www.cancerresearchuk.org/about-cancer/lung-cancer/stages-types-grades/types/pancoast-tumours#:~:text=Pancoast%20tumours%20are%20cancers%20that,of%20the%20lung%20are%20rare. While this type of tumor represents less than 5% of all cases, that still represents a significant number of people. Wishing you the best. Richard (LungCancer.net Team) Did you recently complete treatment and have a followup scan yet? ~ Alisa
Yes. So far so good. I'm just struggling with the after affects now. Stage 3 is inoperable. I've lost the use of my right hand due to nerve damage caused by the tumor. My dominant hand. Being a mechanic, I've pretty much lost my livelihood. I've had to learn to write with my left hand at 44. While I was in treatment my wife gave birth to our first child. She supported me while I was dying instead of me supporting her through pregnancy. I'm suffering from depression due to the loss of my hand. The medication I'm using isn't helping much. Basically I'm feeling lost and don't know where to go from here? I thought connecting with others that have been through what I have might help me and them. Unfortunately there aren't many. Lack of information and support have been a big issue. I hope others can learn from my experience. I better go. Thanks and have a great day.
I can't imagine losing my livlihood, I am sorry to hear that, of course you would be depressed. I knows Pancoast tumors are not as common as other non small cell lung cancers, but we have a lot of the same emotional issues. Perhaps you would like to join a virtual (zoom) support group? I found the group very welcoming and a wealth of knowledge and support. You can register at the link I posted below, attendance of course is optional, as is having your video on or off. You may want to try: https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups. Hope to see you there! Thinking of you, Alisa 
So happy you found a source here to learn and share your experience. It's interesting to hear the perspective of people that are younger when coping with this. Wishing you the very best on this journey!
