How was your pain after a lobectomy?

@rcerwin3, Please try to remember that 'uptake' on a PET can mean many things. It's usually inflammation or infection. The doctors want to be careful and not leave any doubt. Having the biopsy and knowing what it is can be looked at as a good thing. But I also understand how triggering it can be. I'm convinced that we all come out of a cancer diagnosis with at least a bit of PTSD. Try to remember, 'deep cleansing breaths'. 🙂
Your thanksgiving plans sound wonderful! Try to focus on your family.

@rcerwin3 Pain is now worse but its because of lobectomy, not because of open surgery. Was given some morphine and its getting better. Tubes come out tomorrow

@janar SO GLAD!

@rcerwin3 s
Surgery done and I must say I am in much less pain than anticipated. I can say that it is less than VATS, pain on the scale of 0 or 1. Most awful part is how slowly time passes.

@lls8000, Hey. My recovery is pretty much as I expected. I am still sore - example last night in bed I couldn't get comfortable and my right side (where they went in) was REALLY tender. My oncologist when I met with him, told me "we will get through the first CT and talk about it then". I got the idea he wasn't going to budge. I have a friend who had this same surgery and stage but she went to DUKE, and they scanned her every three months for 9 months and then graduated to every six months. I don't know if her tumor was bigger (can you believe this? She can't remember the size. I will never ever forget 2.3 cm. Also she probably didn't got over her pathology report line by line like I did and how my daughter helped me do.).
I got another piece of information that now has me worried again. On my PET/CT, there was a small "uptake" in the upper part of my esophagus. My internist said very likely from my acid reflux but my surgeon and oncologist kept reminding me to go get it checked out. So at my appt. yesterday, the ENT wants to do a sedated endoscopy with potential biopsy. I can't even describe how hearing the word "biopsy" triggered me. Both my surgeon and my oncologist don't think it has anything to do with the lung cancer but I am so afraid of what it is now. My internist said it could simply be from swallowing during the scan but after hearing cancer, how do you allow your head to think positively.
I will keep you all posted. Not sure when my surgery will be as I am waiting for the scheduler to call me. Happy Thanksgiving Renee. I really didn't want to go to the ENT before Thanksgiving as all of my children and my two grandsons (ages 2 and 8 months) are coming from Colorado and Ohio and my son who lives in the same town I do will be spending a lot of time here also. I hope I can not think about it while they are here but I am not good at not worrying and really don't have a good track record.
Anybody ever had this?

Hello @rcerwin3, How is your recovery going?
How did your appointment go with the oncologist? Was that your first meeting with them? What did they offer for continuing surveillance?

GEEZ.....39 years old? I am so sorry. I do not really know how they do an open lobectomy but my heart aches for you as you probably don't want to know more than you have to either. I hope whatever they are going after they get and that this is the last of these surgeries for you. That's an awful lot for your age. I'll be thinking about you. Let us know how you are.

Sorry to hear you are suffering from this but great thing is that it was taken out before it got larger. I believe yours is still stage 1. From what I understand this is very good, even if it is later found somewhere. The initial stage does not change and the medical literature about statistics is always based on the initial stage, not any restaging. So your prognosis would still be really good. It is important to get peace of mind and asking doctors is definitely the way to go. I suggest getting more opinions from different doctors. Micropapillary is the structure or pattern of the cells. 15% means that 15% of the tumor cells were arranged in micropapillary pattern . LVI+ would mean there is lymphatic vessel invasion and means the pathology has confirmed it has reached lymphatic vessel.

I am going this Friday for open lobectomy of the right upper lobe. I am terrified of the pain. The VATS segmentectomy was really easy for me, I spent less than 24 hours in the hospital from the start of the surgery and the next day I was already walking on the hills. I know the surgeon is super experienced but it still doesn't help me with the fear of the pain. He said the difference between VATS and open lobectomy is theoretical in terms of pain. I was told not concern myself with the pain and that it is most important that he can have easy access. Typically his international patients spend 5 days before flying out of the country. I hope I am similar. I wish I could spend 5 days in coma and wake up feeling less pain. I'm 39 years old so I hope that is another benefit for speedier recovery.

@lls8000 Mine was a 2.3 cm. adenocarcinoma in the right lower lung. All nodes negative (29 of them) and wide margins. My surgeon said at my follow up with him last Wednesday that CT scans every 6 months. That is not ok with me. My tumor itself (and I know it is out but what did it do and sneak out before it was out) was LVI+ and had 15% micropapillary. (Anyone heard of these things? All I know if they aren't positive.) So I am meeting with an oncologist tomorrow and hopefully along with my EXTREME anxiety he will put me on a shorter time period between CT's. My surgeon just brushed it off. I will not.

My journey with RLL lobectomy is very similar to yours so far. It's been 3 months ago since. appreciating the small improvements every day was very important in giving me reassurance the recovery is heading the right way. The burning pain in areas such as across upper abdomen, diaphragm areas where perhaps there were nerve damage (neuropathy) where the most troublesome (some days debilitating) took the longest to go away. I refrained from taking pain medications for this issue unless it was to the extreme. Used Tylenol of Motrin. Found warm or cold pads helped divert the sensation away from the real pain. During the day I walked around with the pad tucked in my pants or banded around my waist. At night I slept withe the warm or cold compress on. I did this for a few weeks and to my surprise the pain went away. I'm on my 13 weeks post op. now and I feel I'm almost at baseline.
So so grateful for posting experiences like these. everyone's journey is very individualized but knowing it gets better with time. Continue with exercises as you see fit. Don't overdo and be patient. Believe me, your body will let you know when to make adjustments.
What's the next plan for you after surgery?
Wish you all the best and God bless.