A new member and confused.

sisterME said:

Hi, I am new to this site as well. I have a 58 year old sister who was diagnosed with stage IV NSCLC in November, 2007. It is good to hear that surgery was available to you as it is my understanding that surgery is not available to those who's cancer is to far advanced, as was my sisters case. My best thoughts after reading everything I can get my hands on regarding NSCLC is to be very proactive and the captain of your own ship when it comes to your treatment. Find out everything you can about whats available, call or visit your local American Cancer Society as they are a wealth of information and support. Also the Internet is full of great facts about treatments. Armed with all of the info you can find ,discuss your options with your team of doctors and get a second opinion if you feel it is necessary. I wish my sister would have done all of this but unfortunately she has not. She has completed 12 rounds of chemo and is now on Avastin, which is a very promising drug.

I think that a positive attitude, filled with lots of hope is a real key to getting through. Surround yourself with lots of folks who are there for you and know that there are those of us out here who are rooting for you. I have read numerous stories of folks who have gone through their treatment and tumors have shrunk and they are still around to tell their stories and give hope to others.

There is hope so hang in there and God Bless.

cabbott said:

I would get a three ring binder and put a copy of your reports in them as you get them. Path reports, CAT scans, PET scans, Xray reports, blood tests, EKG's, pulmonary tests, whatever. I put my reports in by date along with a page listing all surgeries in order (including those not having to do with cancer) and another page with all doctors including their address, phone and fax. I keep the notebook at home till I have an appointment. If I'm pretty sure the doctor doesn't need anything in it, I leave it in the car and just bring in a paper pocket folder for the next report (usually a CAT scan).Of course, that goes in the binder when I get home. You would be surprised how often these reports save time. The surgery summary was useful only in explaining to my GP what surgery was done. After a year or so, it was a good reminder to me. My memory is not perfect, never has been, but my notebook is a great substitute for the missing brain power.

Your surgeon has to check you to make sure you are healing properly and may see you regularly (like every 3 to 6 months for two to five years) depending on what he thinks is needed. He may also send you to either a pulmonary specialist, an general oncologist, or a pulmonary oncologist specialist. It depends on what is available in your community or within your acceptable driving distance. Most communities have a general oncologist that handles every kind of cancer. Some oncologists specialize in particular cancer types. They usually work out of teaching hospitals. Pulmonary specialists handle asthma and lots of other lung conditions. My breast cancer oncologist (I have both!) wants me to see the pulmonary oncologist specialist at the place I go, but the pulmonary oncologist specialist told me I'm too healthy at the moment to be seen. We had one visit. So right now I'm being seen by my breast cancer oncologist once a year to handle the breast cancer meds (I'm at 5 1/2 years !!!) and lung surgeon every 6 months(anniversary coming up on 2 years this August).

Surgeons love to be asked their opinion, so you might ask who they think you should see and when. If they don't think you need an oncologist because your cancer was caught early, you can ask about seeing a pulmonary specialist, especially since you have asthma. Keeping your asthma under control will keep you from straining your lungs as they heal. The meds also reduce lung inflamation which may also help.

My wind power is almost back to normal now at two years. The doctor urged me to do daily walking and to use that corny little breathing machine they gave me in the hospital. It exercises the lung muscles apparently. I prefer cardiovascular workouts like step and cycling, but they were out for a few months after surgery. Even now, there are some muscles in my abdomin that just don't work. Apparently a nerve got cut during the last surgery. It made getting the chest tube out painfree, but it also paralized the abdominal rectus muscle you use for situps. I manage a decent crunch, but my situps are still pretty pathetic! I was thrilled the day I did two in a row last year and this year I haven't even tried. I still go to the gym Monday through Friday. This morning was cycling and a 300 workout. I could only use a step without risers for the jumping section and my floor wipes were less than graceful, but I did the whole workout anyhow and all the cycling afterward. So do what you can within reason. Stay in when the weatherman warns of excess humidity and heat. When a walk is doable and the doctor says you can do more, add a little strength training. When your stitches heal, swim, ski, kayak, or whatever you think is fun. I take my limits into consideration, but I work to expand those limits as much as I can. If something is limiting you (like lack of breath) after you think you should be able to do it, ask your specialist for ideas. Rehab, including pulmonary rehabitation exercises, is available for those who need it. So soon after surgery though, you should expect to be winded by a walk outside. Even in air conditioning you will walk much slower and for shorter distances. I used to race walk three point one miles in 43 minutes (this is not really fast, but I usually came in fourth if there were only four entries!). Now I'm happy if I can walk that far in an hour. That in spite of daily exercise and two years since surgery. Oh well, I'm still having fun and I hope you will be able to have fun too.