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Living with lung cancer - Introduce yourself & come say hi
Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?
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@bobca Hi Bob I had Right lung lower lobe lobectomy and resection by robot assisted I was SCLC early stage.. Operation was successful in that they removed the cancer and checked lmpth nodes.. I had my 6 month Ct Scan in November last year no further spread of dicease... I'm 66 was terrified of surgery I will say that robotic is less invasive but 8 months post op I'm still getting the usual stabbing pains nerve damage and pain around the incision site taking 400mg pregabalin but almost getting back to were I was I've been diagnosed with copd shortness of breath but other than that om.. Im sure your procedure will be fine sounds your in good hands hope this helps and good luck with the op.
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4 Reactions@lls8000 Thanks for the encouragement. I have a meeting with the surgeon at the new hospital on 2/25. I expect next steps to be surgery in early March. Not sure he will want additional tests since I have had just about every imaginable test possible over the past four weeks. (kidding of course but it feels that way).
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5 Reactions@fiddlershere New here also and no expert but what I have read is the PET scan shows hot spots - those hot spots can be cancer but can also be scar tissue or infection or other things. Hopefully someone more knowledgeable helps me out if that is not correct but it's what I learned as I am going through the same process.
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1 ReactionWelcome Bob, @bobca, We all understand feeling scared. Cancer is scary stuff. There is a lot of hope and promise in your story. Your doctor is recognizing where you can get the best possible care and is willing to send you to another hospital to get that care. They sound like a great doctor!
I saw a surgeon at a local hospital (for breast cancer), but I had reservations about the surgical/pathology method that they were using. I went to another hospital as a second opinion, and I was so overly impressed with the surgeon and how the facility was run that I canceled the surgery with the local hospital. I knew that I was in the right place, even if it was away from my home. Hopefully you have a similar experience.
Have you met with the surgeon at the new hospital yet? What are the next steps?
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1 ReactionI 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.
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3 Reactions@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?
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1 Reaction@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.
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1 Reaction@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!!,
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1 Reaction@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.
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1 Reaction@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.
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