BridgetO

Hi Mich, Just my opinion, but this sounds like another version of blaming us for our illness. I think that our state of mind can affect our quality of life in recovery, and that stress reduction, prayer (ours and others), positive thoughts, visualization, etc, can be helpful for some of us. But I distrust someone who treats cancer as a psychosomatic illness that requires psychotherapy for "successful treatment". And I note that this person appears to be selling a particular brand of psychotherapy. I'm not buying! Bridget

Hi JWH, I also had Stage 1. I had a right lower lobectomy. in November. I concur wth Tom about using a wedge pillow to sleep. I got a 12 inch foam wedge, which elevates head and chest to 45 degrees. I used it for several months after my surgery and it made sleeping much more comfortable. I'm glad to hear you're well enough to be back to work. Best wishes, Bridget

The process sounds gruelling, but your results are wonderful!

Welcome, JustMe. You're in a hard situation. I wish you and your husband well. My cancer was found early. There are others on this forum who are,or who have partners who are Stage 4 who will be in a better position than I am to give you advice and information. I'm sure you'll hear from some of them soon. Hang in there and take care of yourself as well as your husband and daughter.

Great news, Jeffrey! You will probably feel better once the chest tube is out. I know I did. Best wishes for a fast recovery.

Best of luck to you Jeffrey. I haven't known anybody that's not scared of surgery. Hang in there.

I had neupogen. It's like neulasta but it's a short acting form. I had shots every day for (if I recall correctly) about a week after each chemo infusion. I gave myself the shots. It was easy to do--very small needle injected into the belly. I had no drug side effects from the neupogen, no pain. . I know that some people do get pain with this form of the drug also, but I wonder whether it might be easer to tolerate? You might ask your mom's doctor. Best wishes to you and your wonderful mom. Bridget

Best wishes to you for successful VATS. Hang in there for the marathon!

Hurray! Wonderful news!

Hi Michele, My situation is similar to yours Adenocarcinoma, 1A, VATS surgery in November. I had my 6 months CT scan a couple of weeks ago, so I understand scanxiety. Mine was NED. There's every reason to believe yours will be, too, as Tom said. Hang in there and enjoy every day. Bridget

Great that you're almost done! I understand the stress of waiting for results.. Best of luck, fingers crossed.

Hi Julie, I can understand being freaked out by radiation. We've all heard that radiation can cause cancer, right? I've had radiation for two different primary (non-lung) cancers and the effects were different. And I'm still alive, but most recently have had cancer #3, lung. In 2008, I had radiation for breast cancer. I had some burns-- about 2/3 of the way through I developed a severe sunburn-like rash over a fairly large area, and later blistering, peeling and rawness over a smaller area. Highly unpleasant, but it healed with only a slight redness ( think of the broken veins on an alcoholics nose), and no other scaring. No significant fatigue during ot after. When chemo/radiation was proposed for my gyn cancer in 2011, I was worried about burns and talked to the rad onc about it. She said that skin effects were very unlikely because the radiation was given in a differnt way--as I understnd it, the machine emitting the beams circled around me so that the radiation was more concentrated internally and not so much on the skin. In fact I had no skin effects at all but did have the digestive issues described in my previou s post. I recommend that you talk to the rad onc and find out exactly how the radiation will be given and what side effects you can expect. I'm NED on both radiated cancers. I'm amazed, especially for the gyn one which was very aggressive and had a poor prognosis. I'm also really grateful I'm a survivor of 2 courses of radiation, 2 courses of chemo and 3 cancer surgeries. Hang in there, treatment works, even if ti's unpleasant at times.

Hi Dani, Welcome. This is a good place to get support and information. I had an early stage lung cancer, nothing like what you're going through. I'm sure some of the folks on this forum who are stage IV will respond. They're in a better position than I am to be helpful to you, I think.But, in a way, we're all in this together. I wish you all the best. Hang in there! Bridget

i agree with Michelle about listening to your body and resting when you need to; also about Look Good, Feel Better. I had chemo/radiation for a different (non-lung) cancer. My digestive system was seriously affected. Yours should not be as bad since they aren't radiating that part of your body You may well have some digestive issues and will need to experiment to see wha your digestion will tolerate. (mine took no-fat, no fiber, no dairy--very boring!) Other than digestion, I functioned pretty well and drove myself to my appointments. I was a little tired at times but didn't experience the extreme fatigue that some have. I did have neutropenia. If you have any fever, treat it as a medical emergency and if you can't get hold of your doctor immeciately, go to the ER. With low neutrophils, your body can become overwhelmed with infection in hours. I'm not much of a make-up wearer, but still found Look Good Feel Better to be entertaining. I love freebies! I'm always on the lookout for free stuff or events for people wiht cancer. Might as well get something out of it! Best of luck to you with your chemo-beamo.

I think it's possible for lymph nodes not to light up, but come back positive. My lung nodule didn't light up on the PET, apparently because it was so slow growing and not metabolizing very fast. Because of its location, it couldn't be biopsied without taking it out. So I didn't have a firm diagnosis until after my lobectomy. . My surgeon took out a bunch of lymph nodes also, which thankfully were all negative so I had adenocarcinoma, stage 1a. Is your surgery going to be VATs? Mine was, and my recovery was easier and faster than I had anticipated. I was discharged from the hospital the day after surgery, with a drain tube in place. I did have som pain, especially before the drain was removed 10 days later. I quickly learned how to move to avoid jabs of pain. I had adequate pain meds. I got off of opiods in a few days and just used tylenol and Ibuprofen. I spent a lot of time lying around and I needed help changing the bandage around my drain tube, but I was able to be up and walking around the neighborhood right away. I wore an oversized raincoat to cover up the drain tube and bag. One thing that was really helpful was a foam wedge pillow. I was told to have my head/chest elevated 45 degrees when lying down or sleeping. I tried to use various combinatins of regular pillows and a sitting-up-in-bed type pillow but ended up with a crink in my neck, so my partner went out and got a 12 inch foam wedge from a medical equipment store and it was great. If you don't have one already, I recommend you get one before your surgery. I think they're well worth the price, which I think was $30 or $40. Best of luck to you in your surgery. Keep us informed!

Hang in there, Susan! I've been there. I had the daily radiation with weekly chemo, too. Mine was for cervical cancer and the worst of it was my digestive system REALLY objected to it. I understand the need to vent. When my hair started going, I had a short buzz cut. It was less upsetting than waking up with chunks on my pillow or having a bunch come out when I combed it. Getting it off all at once gave me some sense of control. I got a wig (cheap one!), which I wore rarely. I really got into hats and scarves, though, indulging myself in quite a few. A couple of the nicer ones I still wear. Yep, you're right that you need o do (and can do, and will do!) what ever it takes. Hair is just hair --although sometimes it doesn't seem like it All my best to you, Bridget

I'm glad to hear you got an answer. I was wondering how you and your mom were doing. I wish you both all the best.

Hi Jeffrey, I read all your posts. I'm glad that Tom G has been able to give you so much information and support. I think about you (and your dog) and wish you all the best.

Years ago my grandmother (in her 80s) rather suddenly became confused and delusional, somewhat paranoid, refused to take meds, didn't sleep. She believed people were in the back yard "gathering things up" and demanded someone stop them, she didn't recognize the nightgown she was wearing (thought it was a shawl) and similar things. Turned out it was a reaction to a newly prescribed med (Darvon, if I recall correctly}. Is it possible that something your mom was prescribed in the hospital is causing her delirium? You might want to look up possible side effects of what she was prescribed in the hospital. Sometimes older people have unusual side effects from meds. Hang in there, Jan. This is really a hard situation for you.

Hi Butterfly, It's really odd that they didn't say anything about the nodule at the hospital. I suggest you get appointments as soon as possible with those 3 doctors. The pulmonologist shoudl follow up with the nodules as well as the breathing difficulties. Don't wait! Call in the morning! Best wishes to you.

My tumor was a false negative on the PET scan-- it didn't light up at all. Repeat CT showed it was growing, but very slowly. Due to location, it couldn't be biopsied without taking it out. I had VATs lobectomy and it was adenocarcinoma stage 1A. As I understand it, PET scans show metabolic activity, and small slow-growing cancers don't metabolize a lot, so they sometimes don't show up. If you do have lung cancer, it seems likely it would be very early stage and curable with surgery. Waiting is a big drag, I know. I focused on living my life a day at a time. I do have some moments (and occasionally longer than moments) of anxiety, but mostly I'm just keeping on keeping on. I just came back from the Lungevity Hope Summit. It was really inspiring to see so many LC survivors having a good time! Hang in there!

Hi Brenda, Cancer is anxiety provoking, no question about it. There is hope, though. To me, treatment is totally worth it. I just came back from Lungevity's Hope Summit.. I met a lot of people who have survived many years with advanced lung cancers and who have good quality of life, too! I wish you could have been there! There were also presentations about advances in treatment for LC. There are so many new and effective ones that old statistics are no longer relevant and people's experiences are different than they were a few years ago. I'm fortunate in that my lung cancer was found and treated early (Stage 1A). I had VATs surgery to remove my right lower lobe and my recovery was easier than I had expected. I don't need any further treatment right now, but I'll have regular CT scans to watch for possible recurrences. The info I got at Hope Summit was reassuring. If my cancer does recur, I know I have treatment options and the prospect of continuing an active life. You've had terrible experiences with family members who had cancer. I understand your dread. But hang in there! Things are different than they were 9 years ago and your cancer experience is likely to be different than what you've seen. This site is a good place to get info and support. Keep us informed, both of your treatment and your feelings.

I'm sorry to hear your diagnosis. What's your next step? Or do you know yet? Hang in there, Dan. You can find lots of support on this forun.

I'm sorry to hear about your diagnosis. I know you worked hard to get the robotic surgery you chose. So now you'll need to work hard to get a second opinion and hang in with treatment. You can do it! There are so many people on this site with Stage 4 who are living good lives; I hope they will inspire you.

I have in the past helped a number of people with SS disability applications, or SSI disability .(Social Security is based on what you paid in to the system; SSI is available if you haven't paid enough into the system but have very limited income and resources--the disability standard for both programs is essentially the same) Tom's advice is excellent. Two things I'd like to add. First, submit the most complete documentation and information you can at the initial application. If you have a case manager through any agency, ask for their help with this, or whether they can refer you to any other local agency that can help at the initial application stage. Second, the Socail Security Administration will probably send a questionnaire about your abilities/disabilitie to a person you name in your application. You need to be sure that this person knows that this is coming and is also aware of the disability standards (as Tom says in #3 that you should be). It can be difficult for some people to fill these out for others because they either want to maximize the extent of the disabilty to be helpful (as in "she can't do anything for herself and requires total care") or minimize it because they are in denial or trying to be optiimistic. (as in " she is a wonderful person who tries to do everything for herself and only needs a little help"). It's important for the person filling out the form to be detailed and realistic and as Tom says- be sure to include treatment side effects, especially when treatment is long-term. Social Security is a really convoluted system, so if you can find someone to help who has experience with it, so much the better. And in any case, be sure to meet any appea deadlines and don't give up!