Living with lung cancer - Introduce yourself & come say hi

@dunsmorej54 Hi. I’m newly dx’d with lung cancer and waiting to see oncologist. However, as a former medical social worker, I have thoughts. Consider getting 2nd opinion and/or different oncologist. The oncologist should be supportive, not derisive. It’s your boyfriend’s body and he has a right and duty to himself to do what he feels is right. The oncologist should be clear on expectations or rules if there are some. Like not going to Urgent Care? It’s ok to advocate for yourself and boyfriend. If it doesn’t feel right, it probably isn’t.

@dianelivingston47 I’m newly diagnosed too. I found the PET Scan to be helpful and I got more info from that than any doctor. Finally when I saw my primary doctor I asked her to confirm or deny my own interpretation of the results. It can be confusing so just saying don’t be afraid to make followup appts and ask for honest interpretations of those results. But also, I’m learning those results don’t have to define your life as next step is treatments. So its step-by-step in the process.

Welcome Diane, @dianelivingston47 , I’m sure your head is spinning and this point. It’s a tough diagnosis to wrap your head, and heart, around. Try to take one day at a time. Do you have someone that can go to appointments with you?, especially the oncology appointment?

Hi, I am Bob, a 76-year-old that is new here and a bit scared. Had my yearly CT scan back in early January. Found something they did not like. Scheduled a PAT scan which showed a hot spot. Had a Bronchoscope completed last week for a biopsy which showed positive for NSCLC. It has not spread and they said it was stage-1 and it was caught early. My Oncologist thinks surgery will take care of it and does not think I will need Chemo or Radiation. Had all kinds of tests including EKG, Blood Work, Lung Function testing, and have a few more scheduled. I am scared of hospitals and tests, but I have to get over that. My doctor is sending me to another hospital out of state for the surgery. I have my first meeting with that Surgeon on 2/25. This hospital specializes in lung cancer treatment which makes me comfortable, but I am less comfortable going out of state to a hospital I have never been to. This surgeon is trained to do robotic surgery which I have heard is better than VATS but really don't understand much about either of them. Anyway, that's my story and if anyone has similar experiences, I would love to know what to expect.

@bobca

You have come to the right place. Someone is going to post i am sure soon, links and groups for you to read. You will meet others in this virtual space who understand fear and the worry that can and will creep in as you navigate all that you have listed. I had 2 other cancers yet i have some spots in my lungs they are watching. That is why i follow lung posts.
Go up in the top subject box and put lung cancer. Until someone posts, that will be much to read.
Just know this Mayo Clinic Connect site will help you in so many ways. Give you hope and some calming words. We all know and understand and come back over and over to help and support others.

@dianelivingston47,

Hello Diane, I am sorry for your recent diagnosis but know there are many advances treating lung cancer than before. My husband had extensive stage small cell lung cancer, which had spread to his liver and 3 vertebra. He just finished his 4th cycle of chemo and repeat scans. It still is not in his brain and gone off his vertebrae and only 2 very small areas less than a centimeter each on his liver and half the size in his lung. He is now doing immunotherapy only 1x every 28 days. He did fairly well on his chemo..only had a couple bouts of nausea and they gave him meds to curb that. He lost half his hair. His hairline is still intact but very thin and turned white. You didn’t mention what type of lung cancer you have but I just wanted to come in and tell you, there IS HOPE.
Thank you for coming in and whenever you feel like sharing more, there are people here who understand. God bless you on your journey.

@dunsmorej54,
Hello, I’m sorry you are going through this g through this. Does your husband take prescription anti nausea pills to curb the nausea? They helped my husband tremendously and also noticed if he has something light in his stomach to absorb some of the stomach acid, it helps too. The trick is to take the pills BEFORE he gets sick. First sign of nausea. Also, there are other immunotherapy medications out there. Has the subject of switching come up with his oncologist? You can always get a second opinion and weigh the difference, if any. My husband takes Tecentriq ( Atezolizumab) and had it along with his chemo treatments and the doctor kept him on same one. He’s only had 1 immunotherapy treatment alone so far but had zero side effects. Everyone is different so maybe a switch would help?
Ultimately, it is your husband’s choice on whether to do treatment or not. Palliative care would mean he steps back from treatment all together and they would intervene to treat side effects from the cancer effect on his body. I don’t think it is something you can do for a time and then go back to treatment.
I know this disease STINKS and I hope you both can find peace in the decisions and journey that is before you. Sending you HUGS!!,

@ohiogal8860 palliative care has been with us since he found out and they prescribe all of his medications they are such a big help they always work with us to make sure he's staying comfortable and dealing with everything. The immunotherapy he has been getting since he started chemo is keytruda...he no longer can do chemo but has continued the immunotherapy he's on his 9th round of it and she keeps saying she has to monitor to see if everything goin on are side effects..he's been sick a lot...he does take nausea meds first thing in the morning with some toast before he takes any other meds. He sweats and is freezing all night...last night he had to change shirts 4 times because he soaks right through them...his cough is out of control and this goes on for weeks at a time and the cancer Dr keeps saying he needs to let them know but when we do she gets upset because it's getting in the way of his treatments so we are confused. After his palliative care appt a few days ago they suggested that he transfer to the oncology dept they just opened at the hospital here it's affiliated with the one he currently goes to but we travel a half hour to get there so maybe a new Dr and having them try a different drug would be a good direction to go....he told palliative care that the current oncologist is the whole reason he wants to stop doing his treatments.

@bobca
Hello Bobca…....congratulations that your cancer was evidently caught early and is appearing to be at stage 1A! I was somewhat similar in that my lung was classified as stage 2A (a fairly large tumor but with no further spread). I had VAT surgery at Mayo-Phoenix in late 2022. I can’t speak to the process and recovery from robotic surgery however some people on this site have commented that they have minimal side effects while others have stated lingering issues with fractured ribs. My VAT surgery removed my right lower lobe and they had me up and walking that same evening and was discharged a day and half later. Important to note is that my surgeon employed a nerve block procedure on my right side which certainly numbed any pain that I may have had there for at least a couple of months. I took pain medications for only a couple of days after surgery and could drive a vehicle about a week later (although my wife was more than happy to do that for me for a couple more weeks). I was back to work in two weeks albeit it was work from home desk work. It is probably good to have someone close by to help you get around for the first few days and to remember to get some rest and not rush back into your routine. Given what information you have shared it sounds like you will get through this in very fine shape!

Question……you mentioned that your cancer was discovered by a yearly CT scan…do you have some other preexisting condition requiring a yearly CT?

I believe I’m a new member of the club. I’m 66 and have smoked for 50 of them. I had a PET/CT scan yesterday and although I don’t really understand the report I think I get the gist of it. My poor primary must have thought I had already spoken with my pulmonologist and said “good luck” when he answered an unrelated Emailed question. It’s odd but after I spoke with the pulmonologist I could barely remember the conversation. I guess I was thinking ahead and not really focusing. I haven’t tried to decipher the CT but I don’t think I can resist. I don’t even really know what the story is but I don’t want to take the Google route for information quite yet. On one hand I do wish the doctor had dumbed it down a bit but on the other hand I don’t want to know. Does a PET/CT scan even provide enough information by itself to make a determination? I’ve got two good friends fighting the good fight so I’m a little ashamed that I’m thinking of me. Free venting and babbling. I appreciate it.