Gyongy Posted April 16, 2004 Share Posted April 16, 2004 I am 59 former smoker diagnosed January with NSCLC (1 1/2 cm squamous cell carcinoma stage IA). I had a lobectomy of my lower right lobe, bronchoscopy both sides and removal of lymph nodes. All tissues except the nodule were clean and the doctors at MD Anderson Cancer Center felt i needed no further treatment. My surgery was february 5th of this year and since then I had been in the hospital 3 times, twice with fluid in the lungs and once with bronchial spasms that the doctor thought were due to allergies and or bronchitis but was not really certain about. I still have bouts of caughing that scares me to no end (caughing was the reason I had a CAT scan in December which detected the tumor) and I am really scared that it may be comng back again. I am still in apin from the surgery and although the doctors tell me I am doing well I have no energy and feel really lousy. Is this normal? Am I just being a baby? I have no way of determining how well I should be feeling by now (2 1/2 months after surgery) and what symptoms are just normal and what i should worry about. Reading a lot of the postings tells me that you all are so brave and non complaining--- I just wish i could know how everyone dealt with the surgery and the recovery and the daily fear I seem to be carrying all the time. Gyongy Quote Link to comment Share on other sites More sharing options...
Donna G Posted April 16, 2004 Share Posted April 16, 2004 Welcome. Daily fear, pain after surgery , worry , these all sound pretty normal in these circumstances. Believe me it does get better. If you are planned to have no chemo please be sure and have a pet scan or CT every 3 months. Please keep us posted . Donna G Quote Link to comment Share on other sites More sharing options...
Gyongy Posted April 16, 2004 Author Share Posted April 16, 2004 The surgeon and the oncologist at MD Anderson Cancer Center have scheduled me for xray exam every 3 months and I demanded that they also do a CAT scan (which they did not think I needed) at my first 3 month check. At the time I was diagnosed my cancer was not noticed on the x-ray but was visible on CAT, so I cannot imagine why they would not want to do CAT especially since my insurer has no objection to it. I was also very surprised that no further treatment was suggested at all. MD Anderson was rated best in the country for lung cancer treatment so that is why I went there. I sometimes wonder if I did the right thing. They were great for the hospital stay but the follow up is very poor, even when I complained about severe shortness of breath they sent me home to deal with it. turned out I had so much fluid I needed a tap and a drainage put in. Does anyone know of a diagnosticmethod which uses a special green light in conjunction with bronchoscopy exam which shows even the most miniscule cancer cells during the exam? Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted April 16, 2004 Share Posted April 16, 2004 As I have not had surgery I can't answer your questions but I do Welcome you to the family! Great group of people and I am sure someone will have the information you seek. God Bless, MO Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted April 16, 2004 Share Posted April 16, 2004 Hello,Any type lung surgery is painful and includes most of what your describing.I had a lot of pain for many months and still get some pain where they broke the ribs to remove my lung.But is does get better!!!! Hang in there. FRANK L. Quote Link to comment Share on other sites More sharing options...
john Posted April 16, 2004 Share Posted April 16, 2004 You can always get a 2nd opinion. There are a few clinical trials for early stage lung cancer patients info on LIFE - light for lc detection http://www.xillix.com/LIFE_tech.cfm Zileuton http://www.clinicaltrials.gov/ct/show/N ... 4?order=12 celebrex http://www.clinicaltrials.gov/ct/show/N ... 78?order=8 Selenium http://www.clinicaltrials.gov/ct/show/N ... 85?order=4 Quote Link to comment Share on other sites More sharing options...
chloesmom Posted April 16, 2004 Share Posted April 16, 2004 Hang in there--as far as pain goes, I am 10 months past surgery and I still have numbness and some pain. It's a small price to pay for knowing that I have no tumor in there anymore. Sneezing is still painful, and with spring coming here in the Midwest, I'm reminded several times a day. But, it's ok...... Quote Link to comment Share on other sites More sharing options...
Tiny Posted April 16, 2004 Share Posted April 16, 2004 The "LIFE" link that John sent you is excellent (as always, thanks, John). You might also do a search under "fluorescence bronchoscopy". It turned up some good information. Some of the hospitals in the big cities (such as Seattle) have the machine and some do not. As far as to whether to get x-rays or CTs, the following quote is from the UW: Resident Teaching Conference Speaker: Ken Steinberg M.D. Handout: Annemarie Dooley August 28th, 2003 Optimal frequency of follow-up imaging is a hard matter to address. The standard is to obtain imaging at 3 monthly intervals for the first year and then at 6-month intervals after that. High resolution CT and not plain films must be used for the reasons stated previously. My oncologist told me I could expect CTs every 3 months for the first 3 years, then one every 6 months for the next 2 years, then yearly thereafter (and we live in a dinky little town of around 70,000). I still have "zinging" neuropathic pain arcing under my breast (bye-bye sexy bras...hello stretchy, plain, no-underwire bras ) and weird feelings under my armpit on the side of the lobectomy 2 years post surgery. In my mind, I've had mets there about a zillion times, but nothing has shown up on the scans. As you can tell, I relate very well to your comment about the daily fear...we are not all courageous and non-complaining ALL the time . I have learned to compartmentalize and not let my fear ruin my opportunity to find enjoyment in THIS day...the day that I have FOR SURE. One thing this disease has impressed upon me is that I must be my own BEST ADVOCATE. I used to brush off minor symptoms. Not anymore. So don't be reluctant to ask for the scans/treatment/information you think you need. As several others have stated, second and third opinions can be most helpful, if only for peace of mind. Regarding your lack of energy and feeling lousy: remember that you are not that far out from a very serious, major operation and cut yourself some slack. If you haven't already started, though, it would be a good time to begin an intentional exercise program. Start slowly and build up. I think that most helped me physically and mentally to start to feel I had some control and purpose in my life again. Wishing you the best and please rely on us. Quote Link to comment Share on other sites More sharing options...
chloesmom Posted April 16, 2004 Share Posted April 16, 2004 Yes ma'am, Tiny said it best, as usual..... It is a zinging type of pain that makes you crazier in the head than in the area where the pain is. Bras will never be the same again--I get out of mine just as soon as I can every day. Living with fear is tough, tough, tough--I think one of the better things I did throughout all this was get connected with a sympathetic therapist. You do have to be your own team captain here--there are a lot of doctors involved, and they are all well intentioned and capable, but you are the one whose health is at stake and you get to run the show. It is also your responsibility to make sure each health care provider knows what the other is doing. I also agree with Tiny that exercise is so terribly important. Build up slowly, but it sure does give you a better outlook on things--gets those endorphins going, don't you know???? Take care and stay close here. Quote Link to comment Share on other sites More sharing options...
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