Megrmcd13 wrote:So some questions:
1. If you’ve had this 2 part open surgery, do you have any regrets?
2. What is your lung function like now?
3. Have Mets returned after?
4. Have you been on maintenance chemo?
5. I know surgery is typically the gold standard, but we obviously have some concerns that we’d be going through 2 major surgeries only for more mets to pop up. Am I being crazy for thinking this way?
6. Does having this type of surgery take away options down the line if more Mets pop up?
7. Anything else we should consider or be aware of?
I have no medical background except as a patient and I'm not sure what you mean by a 2-part open surgery. I had two thoracotomies: first they operated on the right side and then the left a month later. My nodules were spread across both lungs. Has anyone mentioned a wedge resection? That's where they remove a wedge shaped section of lung. I never had that so my experience will be different. I had a laser procedure that targeted the individual nodules. Even so, I had deep central nodules that required me to part ways with the middle right lobe and part of my upper left lobe. I think maybe your first question about having any regrets should be your last because whether someone has regrets might depend on the answers to the other questions first. For example, someone who had other health conditions or who lost a lot of lung might have more regrets that someone who lost just a little.
In my experience:
1. I have NO regrets, not a one. Even having lost the middle right lobe and most of the upper left, NO regrets.
2. My lung function is back to normal. I don't know how much difference it made but I had no other medical conditions going into the surgery, I'd had a 6-week chemo break before surgery during which I'd been walking 4-5 miles a day, and I started the breathing exercises with an Incentive Spirometer about a month before surgery. I was back to walking 4-5 miles a day (10,000 steps) about a week after each surgery. I had a terrific physiotherapist, and I was diligent about walking and doing the breathing exercises she assigned, as well as the post-op exercises classes.
3. Yes, the mets returned. Three popped up a few months later. I had SBRT (radiation) on one but the other two are still with me and stable.
4. Yes, I'm on maintenance chemo. I take Xeloda five days a week and get an Avastin infusion every three weeks.
5. No, you're not crazy. The surgeries are a big deal. I didn't have a choice; surgery was pretty much my only chance to buy time. I hoped for cure but if I couldn't have that, I just wanted time. Early on in my journey, one oncologist told me that cancer research was moving very quickly and the next big thing was around the corner. He encouraged his patients to do whatever it took to keep going until that next big thing came along. That's probably not quite what he said but you get the idea.
6. I think the only thing that might limit future opens will be how much lung needs to be removed. Again, I don't have a medical background. To my understanding, they can only operate on one lung at a time. During surgery, the operated lung will be collapsed and the other lung will sustain you through the surgery. If you lose too much lung - let's say your right side - you won't have enough lung capacity on that side to get through another surgery on your left side.
7. The first really big thing: take the pain meds, do not try to grin and bear it
. If you're in pain, your breathing will be shallow and you need to be able to breath deeply to get back your lung capacity. That's first and it's really, really, REALLY important. Second, it's temporary. The breathing tubes are uncomfortable but they'll come out in a few days. The pain can be intense at times but if you take the pain meds and do the exercises, it will lessen over time as you heal. The shoulder on the operated side may be sore for a while but if you do shoulder exercises, it will pass (you can fake swim from bed). I was in a speciality thoracic hospital where they had post-op exercises classes tailored to people who had just undergone a thoracotomy. If they don't offer the same to your husband, ask the PT person to recommend some exercises. I was in a country where they don't try to throw you out of the hospital as soon as possible; they kept me for a 7-8 days after each surgery. If you are released within the first few days, you might consider spending as much hospital time with the PT person and make sure you really know all the exercises and are doing them properly. If your husband is not connecting with the physical therapist assigned, ask for another.