Living with lung cancer - Introduce yourself & come say hi

@islandmamma- Thank you for posting the Veterans crisis Hot line. In just the past couple of days we have had three Vets join us with lung and other problems!

Welcome @meka. I am glad that you found us, and thank you for your service. I have a step-son who was injured in Desert Storm.
I understand your fears about cancer. I am a 21 year lung cancer survivor. I have had 4 cancers.
It sounds like you have had some slipshod medical care and advice. You need a complete cancer team so that you can receive the best quality care and life.
You have received some wonderful leads here so I wont address those, except to say, call ASAP!
Is your PTSD, MST being treated? This is very important to get the right help and meds because it will help you tackle your cancer journey. Do you have a therapist?
Do what is important right now. Take one day and one issue at a time.
Please keep us updated.

Here’s a couple more names at mayo. Dr Wigle was my thoracic surgeon and Dr. Halliemeier was my oncologist and radiologist

Don't know how to share with everyone, will reply here. First, I really appreciate any connection with some hope. This all started for me as pre-op for knee replacement surgery, October first. Went from chest X-Ray to ct to PET scan to one biospy. Through all this I have had two candles knee surgerys, October 31, only knew because I called the Surgery Center myself, called my PC group to tell. As far as know go ahead, scheduled for Nov. 12, canceled the morning of. To this point I have called, messaged, been on healthevet .site trying to find out anything. No contact from any Dr. at all. Saw my psychiatrist for regular visit, vented for sure, biopsy was next day, she tried to intervene by calling my "group team", getting a promise that I would get results. Waited through Thanksgiving to Wed. after. Call that afternoon from a Josh at the clinic, "it is adenocarcinoma, but if you have have it, the best kind". Mind you, did not see or hear from any Dr until a retired Oncologist on December 3. That's where should be able cure, but must talk to the mystery "tumor board" at local hospital. Next was, you're complicated, see aforementioned surgeon in other post and his kind prognosis.
This is not a bash VA so much as for me and for someone with my mental health issues has made me only crasier!!! Not waiting around, have spent hours and hours on phone calls, VA health site, regional Hospital site, just Fri. Patient Advocate, Women's Program Manager, local and National. Asked and begged for independent opinion. They will not refer me out, they can't, and come back Mon. to the retired Oncologist again.
From own research I am gleaning it's been much more complicated from the first X-Ray on October first. Looking again last night, there are at least three sites, and we're deemed malignant, metastatic, NOT confirmed by VA radiologist though, so still previewing and I cannot see actual fell because some are from an outside providers and not confirmed by VA..
I guess Hot Line or one of my senators, on joy. Did make a pact with my Vet Center counselor, plus could not leave like that. Just would like a life of no life to live as long as possible. Coleen, understand this might not be posted. Just had to vent. Talk about trust issues!!!!!@

Deal with one thing at a time. Find a dr that you can trust and relate too. Don’t let those other drs take control of what you think or feel. I can certainly understand how you feel. I left mayo a couple years ago and am seeing my third dr and I am ready to go back to mayo My heart goes out to you along with the strength and courage that I know you have We never know our strength until we are put to the test. If I can help or just listen I am here

@meka- I am so sorry that you have to go through all of this just to get a diagnosis and treatment. I'm literally at lost for words. First of all there are no "best kinds of cancer" and secondly there really aren't any cures, there are treatments. There are cancers that are virulent, aggressive cancers and very indolent ones-slow moving or not changed. And there is hope- we are all here as survivors! as I have said I am a 21 year survivor of lung cancer!
Here's my advice: Go to your politician and don't leave until you get some positive results toward better health care. Secondly, not all lung cancers that have more than one lesion are metastases. Three of us on this site have what is called Multifocal Adenocarcinoma of the lung, which mean that there are more than one lesion at a time. Please don't try and read your tests. Unless your results have been confirmed by a radiologist I don't think that it's a wise idea unless you have been trained to do that. Otherwise you will be driven crazy.
I was a bit confused about where this all leaves you. Tomorrow is Monday and you need to think about one goal at a time as @sakota suggested. What will yours be? What symptoms do you have? Are you breathing ok? Are you in pain?

Not sure what is going to happen today. I'm going to ask if I could record whatever it is. You may, are there any VA medical centers that are cancer centers, or affiliated?
I do have a friend that goes with me, so some support. Will head straight to Senators office today, if I need too.
Good note, we are having one of those mid December warm-ups and have spent much time out with my dog, Summitt and to the dog park yesterday. He always makes me laugh 😂!!!
No I am very asymptomatic, yes I didsmoke and have mild COPD.
Always been active physically, it's served as an outlet all my life!
Again, thanks for you all being so willing to support and listen. Looked for a group locally, not. Anyway out to get my vitamin d before I go. !!

@meka- How did you make out?

oops posted in wrong place

Rather timid here. First time to post. July 9 I had the lower lobe of my left lung removed due to a pulmonary carcinoid (stage 3) followed in August by removal of lymph nodes. All except the two nodes taken with the first surgery were clear. In September my Chromogranin A, Serum was 929 ng/ml (normal is 93 ng/ml or lower). December's blood test indicated that it had risen to 1614 ng/ml. A new CT Scan is to be done sooner than the one originally planned. I am trying not to be concerned. Any advice or comments?