New here. terrified of the unknown.

LOWE2019

srndpty4life said:

pulmonary visit=COPD

Saw a Pulmonology Dr. a week ago and found out I have severe copd. Now trying to find the right inhaler and learning how to live with having it. Other tests have been ordered, he has recommended scans of the nodules in my lung every yr. for 15 yrs. I also learned there are 2 smaller nodules in there but he dosen't seem concerned. I don't like the idea of no new scan for a yr. but he is the Dr. There is a strong history of this disease (lung cancer) in my family and I wonder if I should push him to scan in 6 mos. I was told not to let them put off a biopsy by a friend who has been through this. Return visit in a few weeks with many more questions and answers to be asked. Jorola, I have taken your advice and am taking it one day at a time, It sure has helped! I will be a first time Gma soon and have alot to live for and look forward to!

SCANS

I am surprised the pulm doc would wait a year to have a scan.  I go back in April and it will be my first scan since originally found, which will be a 3 month scan.  Did he ever have you take a pet scan, I mean that to me would be the next step to see if it lights up.  What does your nodule look like? Lobulated, spiculated, round? Mine is spiculated which is concerning, but 9mm is to small to biopsy, so really there is nothing i can do at this point, I could push for VATS but yet that option scares me also.  If it has grown on next scan even a little then I will have them do Vats and my Pulm Doc said he would be pretty sure since no uptake on PetScan it would be stage 1a which surgery is all you need, and then scans for years.  I am just praying that when we do a rescan its gotten smaller or just gone.  I am 52 and my Doc that I was still young (really), but I was also a smoker so there is that.

 

CarolynL

New to here feeling overwhelmed

My husband was diagnosed with NSCLC January of 2018. He had no symptoms at all until one Saturday evening when he took the dog out and came back in and bent over to wipe his paws and couldn't catch his breath.  Made a quick trip to our local emergency room and was told would have to be taken via ambulance to a larger hospital in a town about 40 miles away. A mass the size of a softball was in his upper right lung.  Admitted to hospital about 1am on a Sunday biopsy on Monday, pulmonary doctor on Tuesday, sent to Oncologist and started chemo on Thursday.  Long story short he had NEVER been sick in our 38 years of marriage so every treatment they gave him he had an adverse reaction to. I think he has been in the hospital for something every other month.  Was told tumor would most likely never be operable, but after two month of chemo, a new PET Scan was done and we had a doctor at Barnes in St. Louis, say he could operate.  After the operation we were told that they took the upper 3rd of his right lung and 5 out of the 9 nodes they took were cancerous.  Back to chemo and added radiation.  He has had pneumonia twice and is on oxygen (5L) and able to sustain high 90's on his O2 as long as he is sitting, any movement and it drops to low 80's to high70' (sometimes lower).   I am having a hard time staying positive and strong for him and our children.  I am a planner and trying to stay one step ahead of everything, but it is hard to do when you don't know what is coming next.  Just need someone who has gone thru the same thing or is going thru to talk to.  SORRY SO LONG

Trtlvr

CarolynL said:

New to here feeling overwhelmed

My husband was diagnosed with NSCLC January of 2018. He had no symptoms at all until one Saturday evening when he took the dog out and came back in and bent over to wipe his paws and couldn't catch his breath.  Made a quick trip to our local emergency room and was told would have to be taken via ambulance to a larger hospital in a town about 40 miles away. A mass the size of a softball was in his upper right lung.  Admitted to hospital about 1am on a Sunday biopsy on Monday, pulmonary doctor on Tuesday, sent to Oncologist and started chemo on Thursday.  Long story short he had NEVER been sick in our 38 years of marriage so every treatment they gave him he had an adverse reaction to. I think he has been in the hospital for something every other month.  Was told tumor would most likely never be operable, but after two month of chemo, a new PET Scan was done and we had a doctor at Barnes in St. Louis, say he could operate.  After the operation we were told that they took the upper 3rd of his right lung and 5 out of the 9 nodes they took were cancerous.  Back to chemo and added radiation.  He has had pneumonia twice and is on oxygen (5L) and able to sustain high 90's on his O2 as long as he is sitting, any movement and it drops to low 80's to high70' (sometimes lower).   I am having a hard time staying positive and strong for him and our children.  I am a planner and trying to stay one step ahead of everything, but it is hard to do when you don't know what is coming next.  Just need someone who has gone thru the same thing or is going thru to talk to.  SORRY SO LONG

New too

Hi CarolynL,

I am new here too and came across your post while scrolling. I'm sorry to read about what you are going through. My boyfriend of nine years was also diagnosed in January. Originally he was given the diagnosis of unknown primary because they found two tumors in his small intestine. The PET scan showed a mass in his lung, on his liver and in his bone also. He has always been active and never smoked. This has devastated us. Since starting treatment he is constantly fatigued. I feel that he is getting weaker everyday and I'm scared about what is going to happen. I also struggle with staying positive in the face of this monster. 

ODAAT

Halfway through

I was diagnosed just before Christmas, and was overwhelmed at first by the expirience. Went to primary with a wheeze that had lasted over a month and was sent for a chest xray.

Pulmanary Dr. then requested a CT scan in a very short lenght of time. That was followed by a PET scan and MRI and shortly after that a biopsy to determine type of cancer which had taken over left lung. (I believe that was the order of tests) The MRI revealed a spread to liver which moved diagnososis to stage IV.

Pulmanry Dr. ordered radiation which was very helpful in achieving breath, followed by CHEMO which I hope is halfway completed. Doing quite well do to new technology and updated treatment techniques which does include immuneotherapy.

Have a lot of hope that others have access to a team of Drs. with the equipment and knowledge enough to say "our aim is to cure you"

Bottom Line is, one day at a time

ODAAT