jcawork Posted May 29, 2004 Share Posted May 29, 2004 Hello, I am 42 and was just diognosed w/ lung cancer. Biopsy was positive for cancer but could not be typed (not enough cells) and has to be redone. They are guessning NSCLC. I am told I am not operative as I have a 4cm mass in the back of the right lung and 2 positive nodes in the hilum. PET, CT, MRI of the rest of my body is clear. They are saying I would be a llb. Thoughts, do you agree w/ this. Is my prognosois as bad as I think it is? I am feeling quite hopeless. Scared to do chemo and radiation which is what they are offereing. Have gotten a number of opinions. I have a cough and wheeze which they say is due to the hilum node irritaing my bronchial tube. Has anyone had this or has LC kicked up thier asthma? Thanks and I hope someone is out there. Jen Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 29, 2004 Share Posted May 29, 2004 Jen, Get a second opinion. I didn't have postive nodes in the hilum, I had one found during surgery in the mediastinum pair that put me at IIIa instead of the I or II originally thought prior to surgery. If "they" are saying that surgery is not an option, yet chemo and radiation are, MY suggestion (and remember, I'm not a doctor) is if you can't have the critter taken out, poison that sucker 'til it dies! Zap it, nuke it, fry it! Surgery MAY be an option AFTER the chemo/radiation stuff... It won't be a walk in the park, the mental trip is a doozy, but ya have a helluva sounding board here and will find answers to questions to ask and some you may not think to ask. I'm sure there are other IIb's on the board, we gots all kinds! Mental slams are vicious, talk to your doctor (primary care) about anti-anxiety medications. Some on here are on the daily anti-depressants, some take the "Band-Aid" of Xanax (anti-anxiety taken "when needed")...you may need a sleep aid, as well. Not sleeping is detrimental to your mental health, sometimes those voices in your head need to be shut up chemically... Continue to look both ways when you cross the street and not step out in front of that Random Beer Truck (the board members call it my truck, but I'm not driving, just mention it a lot...). BREATHE! Do NOT forget to breathe... DEEEEEEP breath in.....slowly exhale and repeat...a few times...helps relieve some of that stress. CRY when you need to. That's right, I just gave you permission to CRY. Take the time in your shower to let it all out - privacy in there that you can't find in other places of the house. I prefer a long hot bath with candles, aromatherapy and a glass of wine.. WATER THERAPY, tears and soakin'... Find a counselor, someone to tell you that what you are going through is NORMAL helps tremendously. Guess what? A cancer diagnosis does NOT make all the other stress in your life go away! Yeah, surprised me too! In fact, it can add to some of it...another surprise, I'm sure! My latest stress is too many work absences and "re-structuring"...but hey, what would life be if it were all roses and sunshine?? Hang in there, we're all pullin' for ya! Stick around, you'll learn lots. Just to reiterate, get that second opinion on your treatment.. Take care, Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 30, 2004 Share Posted May 30, 2004 Hi Jen and WELCOME! I don't have answers to your questions, but I do know that it is normal to be scared. It's probably kind of hard to believe right now, but eventually you will get over the shock of the diagnosis and be glad to move to the next step of treatment. I don't know why it is, but it just seems that after a while, it gets more comfortable to talk about it and fight it, especially when you have found this wonderful board of supporters that will cheer you through every step. You can come here when you are up, when you are down, when you need advice, and when you feel like cheering up someone else. It will come in time. Just breathe, breathe, breathe. I've told my son since he was a little boy to relax his shoulders when he's feeling tense - it works every time - you just can't be tense and relax your shoulders at the same time. Try it. Once again, welcome! God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 30, 2004 Share Posted May 30, 2004 Snowflake pretty much said everything I could say. I second the chemo and radiation plan--I found chemo not nearly as tough as I feared. I wasn't fun at all, but I was able to function pretty well through the whole thing. I worked most of the time, did some things I wanted to and rested a lot more than I usually do. I barely got nausea.....maybe only a couple of times and it was minor at that. I had radiation for breast cancer, so I don't know about lung radiation, but for the breast, the only really big side effect is fatigue, and it sure was a factor for me. But, I rested more. I'd do the treatment if I were you--also, surgery may become possible after the chemo and radiation. This is a lot to wrap your head around, we all know that. Time and a plan will really make a difference for you. I also never thought I'd need to see a therapist, but I started with one last year after my diagnosis and I still see her about once a month. It just kind of keeps the monsters at bay. I also took anti-anxiety and anti-depressants for quite a while, and I've weaned myself off of them recently. But, I wouldn't hesitate to start up with them again if need be, they help a lot. I don't know where you're from and what type of medical facility you're being seen at, but if you can get to a large comprehensive cancer center, like a university hospital, that might be a good place for a second opinion. This is all too important to not know your options. Keep us informed--we're here rooting for you... Quote Link to comment Share on other sites More sharing options...
dave s Posted May 30, 2004 Share Posted May 30, 2004 Jen, In my opinion your prognosis is as bad or good as your ATTITUDE towards the cancer. If you look around this board you will find many of us at advanced stages well beyond our projected life expectancies and doing quite well. I was diagnosed at stage 4 with distant site mets and projected to survive no more than 6 months, but that was 2 years ago. I still have every intention of eradicating my disease entirely. I may not be cancer free today but I am working on it tirelessly. I have ben troubled by a persistent stridor and wheeze also. It's caused (in my case) by tumor tissue compressing the airways leading to my right lung. For a time I had almost no air exchange to all 3 lobes of my right lung. It's much better now. Best Wishes, Dave Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted May 30, 2004 Share Posted May 30, 2004 Hi Jen! Glad you found us. The others have said it. At first it is a sickening thought to think you have cancer, but after awhile it does get easier. Go for the chemo and radiation and anything else they say. I was 44 when they found mine. I have made it 3 yrs plus! Learn what you can, be careful about searching the web for info, it is depressing! Ask what you need here, most have positive responses. Cindy Quote Link to comment Share on other sites More sharing options...
john Posted May 31, 2004 Share Posted May 31, 2004 I would get a 2nd opinion from a surgeon who deals only with lung cancer. Stage IIb is usually operable. Stage IIIa is controversial for resection. Stage IIIb and IV are usually inoperable but sometimes even stage IV is operable. Sometimes the stage doesn't make it inoperable but where the tumor is or other medical problems. Below is a link to all the NCI designated cancer centers. They have been qualified by the cancer division of the NIH. http://www3.cancer.gov/cancercenters/centerslist.html Quote Link to comment Share on other sites More sharing options...
ejpritz Posted June 1, 2004 Share Posted June 1, 2004 Hello there: I am no expert in this by any means. All I can tell you is that my mother was diagnosed in November with non operable stage 4. It has now been two motnhs since her successful surgery. She has been told by the surgeon that at the moment she is cancer free. My mother got a second opinion without looking for one. She was getting a second needle biospy after her diagnosis to confirm exactly what type of cancer they found. She suffered from a collapesd lung during the procedure and was admitted to the Hospital. The man who collapsed her lung showed her scand to a collague of his, who turned out to be the best dr. any one could hope for. He walked into my mother's room at 9 pm, and introduced himself and told her that he could "cure" her. He told her he could do very aggressive chemo and radiation to shrink her tumors (one in each lung) and then operate. We were given negative feedback from almost everyone we mentioned his approach to. To make a long story short, he proceded with Radiation 5 days a week and Cehmo once a week. At the end of six weeks one tumor had disappeared and the other shrunk significantly. HE has since informed us that he does not believe the timor that disappeared was ever cancer in the first place. He operated two months ago, removed a third of one lung and two ribs. She is doing well. If we never met this man, or stuck with her Oncologists prognosis she would probably not be here right now. Please get a second opnion. Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted June 2, 2004 Share Posted June 2, 2004 Jen, I too coughed and wheezed. It got better after the second or third week of radiation therapy. I coughed sometimes for a half hour or more. Also would going into these coughing spells if I was talking for a little while. Hopefully your coughing will improve also. I still have coughing spells sometimes, my grandson who is 4 has asthma and has to take breathing treatments will ask me, Nannie do you need a breating treatment. As for you being in stage IIb and inoperable, I would question the doctors on why they are saying this. Also you may want to get a second opinion. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 3, 2004 Share Posted June 3, 2004 Jen, See if my oncologist would at least ask my surgeon if you could consult about surgery. He shoots straight. He also has golden hands. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
natalie Posted June 4, 2004 Share Posted June 4, 2004 Jen, If surgery is not an option, inquire about rfa (radio frequency ablation) to the lungs. It is a non invasive procedure that can get the tumors that are in hard to reach places. Also I agree with getting a second opinion. I would imagine at IIb you should be eligable for surgery. Here's more info on RFA. Keep us posted. http://www.mayoclinic.org/rfatumortreat-rst/lung.html Quote Link to comment Share on other sites More sharing options...
karenl Posted June 5, 2004 Share Posted June 5, 2004 Hi Jen John is right. Stage II is usually operable, dependant upon tumour location (if you stick with this board, you will find that John IS usually right!!). Get a second opinion! All the best. Karen Quote Link to comment Share on other sites More sharing options...
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