2young Posted February 23, 2004 Share Posted February 23, 2004 First time posting here. My name is Allison, I'm 30 years old and the mom of two little boys. My husband is 43 - we just confirmed thru a PET scan what we've been fearing for a couple of months now. He has a pretty large tumor in his upper right lobe that appears to be cancerous. He is scheduled for surgery in 8 days. We still don't know what stage he is. The pulminary specialist is gone for the next week and we are now scrambling to find 2nd and 3rd opinions prior to surgery next week. Seems like we've been getting the run around for this entire couple of months worth of tests. We've certainly learned the need of being your own advocate while dealing with doctors... The one positive thing we found today was that the PET scan didn't show any "hot" spots elsewhere. If it had, we'd have been on the first plane to Seattle (we're up in Alaska). Still considering that; depending on what we find in the next couple of days. We actually have some great physicians up here and top of the line facilities. But this last couple months is giving me doubts. I'm way to young to be a widow.... Anyone out there from our area? At least he is healthy is all other areas. After smoking for 26 years, two years ago he finally got serious about his health. Quit smoking, started running 5 days a week, healthy changes in his diet and overall life style. Yikes, this is NOT something we were prepared for. Sorry about this writing. I'm jumping all over the place just rambeling... Wondering if you guys could advise me about what to expect post surgery. How long will he stay in the hospital? How long will he be in bed? How long till he's back on his feet? I know these are all questions without definate answers, everyone response differently. Just looking for an idea of what to expect. Any suggestions for making this time bearable for the love of my life would be appreciated. Thank you all! Quote Link to comment Share on other sites More sharing options...
norme Posted February 24, 2004 Share Posted February 24, 2004 Oh MY Dear, My heart goes out to you, your husband and the two children. Your husband sounds like his body is strong right now so that is good. Hopefully they can remove the upper right lung and he can get back to his regular routine. He will probably be in the hospital if all goes well, and there should be no reason that it won't, for about 5 to 8 days. It will probably take him 3 to 6 weeks to recup at home. His breathing will be somewhat short but he can get used to that. It is all according to the stage of cancer, if it is cancer, as to what the future treatments may be. Some reports say to do chemo even if it is stage 1A. Some drs do this while others do not. I know if it were me and I were 43 and had a lung removed, I would go for chemo too. It may tire him some doing that but it also may prevent future spread. He will need for you to be strong. You can, I am sure, for you are on here to get some advise so that means you are strong. Hang in and hope everything turns out good. Lets first pray it is not cancer but just a benign tumor...... Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted February 24, 2004 Share Posted February 24, 2004 I was a Stage I, restaged to Stage IV, April 2003. I was originally diagnosed in September 2001, and had my first surgery in October that year. After discovering, what appeared to be another tumor, I had a second surgery, September 2002. This surgery found a benign tumor. Everything was going good until April 2003, when they discovered mets to my lymphatic system. The mets had spread through much of the lymphatic system as I had nodes in my neck, under arm, groin, medialsteinal area, and diaphragm. I went on a 19 week program of Carboplatin/Taxol, 6 cycles, 1 cycle once every three weeks. (I had an exyra week because of low blood counts.) The last part of September, about 2 weeks after my final chemo, I was scanned and the scan showed that the lymph node tumors had either disappeared or had stabilized. 6 Weeks later, the first part of November I was scanned again. This scan revealed mets to the liver. It was "what next will this disease bring to me". I was placed in a clinical trial testing the efficacy of a new drug aginst Iressa, a proven drug for lung cancer. These two drugs came in pill form and I took two pils each day, one a placebo and the other was one of the two drugs and I didn't know which drug I was getting. As EKG changes had been found in initial studies of the new drug, I had to get a weekly EKG. I started taking the pills on December 9, 2003. On January 6, my EKG diviated fromthe norm. I was temporarily reemoved from the study and I had three weeks for the EKG to return to normal. If it was to return to normal, I was going to be restarted on the drug, but at 1/2 the dose. My EKG did not return to normal in the alloted time frame of 3 weeks. The study was unblinded and it was found that I was taking the new drug. The decision was to start me on a different clinical trial. I was scanned again and it was discovered that the liver tumor had shrunk, and all other tumors were stable and/or disappeared. The oncologist showed my wife and I different views of the scan and told us that she and the radiologist could not find any evidence of active disease. So, at the present, I have no active cancer and am now a 2-1/2 year survivor. I told you all this to demonstrate to you, that, although, lung cancer is some very scary stuff, it can be survived. Your husband is young, and it sounds like he is very active, if there is such a thing in Alaska in the winter time. When you are first diagnosed it is hard to imagine survival when one starts researching all the bad stuff about lung cancer, and I don't mean to take the seriousness of lung cancer lightly, but it is surviviable. We have more than just a few long term survivors on LCSC. I can Mention Connie B, David P, David A, Donna G, Nancy RN, and many others who have been fighting lung cancer for more than 2 years, and if I don't mention BobMc, I will really be in trouble. You are doing all the right things in seeking 2nd and even 3rd opinions. It is good to get those. I switched to the doctor who gave me my 2nd opinion, because her patient relationship was much better than the other oncologist I was seeing, not to mention the fact that the 2nd oncologist specialized in Lung Cancer and on the Staff of the University of Wisconsin Comprehensive Cancer Center. Comprehensive Cancer Centers are good in that there are only approximately 20 CCC's in the United States and the National Cancer Institute oversees the operation of these centers. These centers are all linked together, by computer, so that information can be rapidly diseminated. You can obtain a list of all the Comprehensive Cancer Centers at http://www.cancer.gov Everyone here at Lung cancer Survivors for change has a story to tell, most of which are very emotional. We have many Lung Cancer Warriors here. You can come here for advice. You can come here to rant and rave. You can come here to cry, we understand because all of us have shed many tears. You can also come here and laugh, because we have, somehow or other, discovered there is a sense of humor surrounding all this. Welcome to the LCSC Message Board. We are sorry you have the need to be here, but now that you here, pull up your keyboard and make yourself at home. Quote Link to comment Share on other sites More sharing options...
Debi Posted February 24, 2004 Share Posted February 24, 2004 Hi Allison... What to expect post surgery... First of all, don't be upset right after the surgery...your husband will have all sorts of things hooked up to him. My daughter told me also that I looked like a prizefighter, my eyes were swollen shut and my face was all swollen up from the anesthesia. So as far as your concerned, just try to expect it and know that it is normal. Every day after my surgery I felt a little better. By the second day out I was demanding real food instead of tea and jello and all that crap! I was operated on a Monday, and by Thursday my catheter, epidural and chest tubes were removed. I went home on Saturday. Everyone is different of course. Buy your husband lots of pillows because I had about 8 pillows on my bed so that I was comfortable. About 2 weeks after the surgery, I could go to the grocery store but I built up a sweat doing so. I went back to work about 10 weeks after the surgery...some people have gone back before 10 weeks, others it has taken longer. Recovery is uncomfortable but it is doable. I, for one, am the world's biggest crybaby and I did it! I now go for scans every 3 months and so far, all is well. I am back to operating normally...the only thing that bothers me is that if I talk alot, I get breathless. Otherwise, I am up and running around work like a crazy person as normal and doing everything I did before. I still have numbness in my diaghram area which is caused by the incision (it causes nerve damage) but its a small price to pay. Hope I have addressed your concerns Allison. It sucks having cancer and it is a big shock. You sound like you are doing the right things and have already discovered that you and your husband have to be the advocates for his health care. Take it one step at a time and keep coming here to ask your questions!!! Good luck to both of you... Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 24, 2004 Share Posted February 24, 2004 Allison, I see that you need to go "Outside" for surgery, were your husband to be lined up for chemo and/or radiation, could that be handled in Anchorage or would you be heading to Seattle to stay during treatment? I'm not sure on the idea of flying after surgery - I was in the hospital for nine days due to pain management issues and the 30 minute ride home in a mini-van was grueling. I bought a wedge for my bed to keep me at an angle as it scared the hell out of me to lie down flat and gurgle (and then there was the fact that I couldn't get back up by myself). I had the lower and middle lobe of my right lung removed, not sure where your husband's cut will be in relation to where mine was... I cannot imagine trying to get "comfortable" in a coach seat with the pain that was in my back/chest... Traveled to MD Anderson in Houston a littlle less than a month after surgery in a private plane with big, comfy seats and STILL was far from "okay". Here's hoping he's all fixed up and healing when it's time for Break Up! Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
Hebbie Posted February 24, 2004 Share Posted February 24, 2004 Allison, I am so sorry you had to join us here, but you won't find a better place for answers to your many questions, as well as the most caring people I have ever had the pleasure of knowing! I had surgery in January 2003 to remove my upper right lobe for what was believed to be Stage I Non-small cell lung cancer. It wasn't until the final pathology report came back after surgery that I was restaged at State IIIA due to some positive lymphnodes in the mediastinum area. I had my surgery done in a Philadelphia PA hospital, about 30 minutes from my home on a Monday morning. The chest tube was taken out on Wednesday, and I was home by Thursday night. . .and believe me, I was ready to go home!!! I do recall that the 30 minute ride was no picnic, I was sore and every little bump hurt. I agree that a plane ride following this particular surgery may not be the best way to go. I was on pain meds for about 2-3 weeks after surgery then was ok with just Tylenol, but everyone is different. I have very little pain these days, but still have some numbness in the incision area as well as my right breast. They told me it took take a year or longer for that to ease up. Since surgery, I had precautionary radiation and chemo and finished all treatment this past June (see my signature for details) It sounds like your husband is in good shape physically -- now you both just need to prepare yourselves mentally to beat this thing -- and it can be beaten! Please let us know how he is doing! I will be praying for a quick recovery from surgery, Heather Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted February 24, 2004 Share Posted February 24, 2004 Hello Allison, From what you've been shown so far, there are many varieties of rates of recovery and discomfort from surgery. Continue to ask questions, and write the questions and the answers down, along with the medications, the doctor's visits, etc. It makes it handy to have it all in one place. I'm glad your husband has you to advocate for him. It makes a huge difference. This beast can be survived. There are many of us here to prove just that. Keep us posted as to what's going on. You and your husband are in our prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
ginnyde Posted February 24, 2004 Share Posted February 24, 2004 Allison, just adding my two cents. 1. Make sure to have a teddy bear or pillow for your husband to hold on his incision for coughing, sneezing, car riding etc. 2. Do not let him be a macho man, pain meds are crucial to a faster recovery. 3. Make sure he uses his breathing machine (don't know name, someone else here will tell you) It really helps. 4. As soon as possible, walk, walk, walk. Good luck to you both and hang tough, it is beatable. Ginny Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted February 25, 2004 Share Posted February 25, 2004 breathing machine... do you mean the INCENTIVE RESPIROMETER? I used to call it uncle wally. lived with it, slept with it for about 6 weeks. Used faithfully it can make an ENORMOUS difference. I got to where I genuinely disliked the thing, I have four of them scattered about my home. They gave me one each time I went to hosp. Of course people with healthy lungs canjust max it out and think it's fun. BUT you can see how you are improving, and that's a good thing. MaryAnn Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 25, 2004 Share Posted February 25, 2004 Ginny & MaryAnn - I called it the "Torture Device from Hell".... I had a nice night nurse, his name was Jay. When he saw that I was repeatedly hitting my "goal", he raised the #*%& bar! SO, from then on, he was referred to as "Jay, the EVIL Night Nurse". (...and the darn machine STILL has me beat, I can't "MAX" it!) Becky Quote Link to comment Share on other sites More sharing options...
Carol T Hawes Posted February 25, 2004 Share Posted February 25, 2004 Welcome to you and your husband .Just the word cancer can frighten you to dealth let alone what the treatment is going to be. I was diagnosised in October of last year with NSCLC and operated on quickly,never had a chance to get second opinion.Surgeryis difficult at least for me it was,but than I'm alot older.A 5 day hospital stay,where the pain was controlled to a much better degree than at home.Get good pain meds for home. Sleeping is really difficult,I stacked piles of soft pillow togather,I slept in almost a sitting position. Also kept a very soft pillow on my chest. Walk, as soon as you canI was up on the first day and walking on the second and I'm still walking. What I found I needed and really helped was someone who had already walked in the shoes I was now wearing. Four months later and here I am now sleeping, taking no pain meds and walking. Going for my first cat scan the end of this month,little bit nervous. Good thoughts and prayers are with you carol Quote Link to comment Share on other sites More sharing options...
Carol T Hawes Posted February 25, 2004 Share Posted February 25, 2004 Welcome to you and your husband .Just the word cancer can frighten you to dealth let alone what the treatment is going to be. I was diagnosised in October of last year with NSCLC and operated on quickly,never had a chance to get second opinion.Surgeryis difficult at least for me it was,but than I'm alot older.A 5 day hospital stay,where the pain was controlled to a much better degree than at home.Get good pain meds for home. Sleeping is really difficult,I stacked piles of soft pillow togather,I slept in almost a sitting position. Also kept a very soft pillow on my chest. Walk, as soon as you canI was up on the first day and walking on the second and I'm still walking. What I found I needed and really helped was someone who had already walked in the shoes I was now wearing. Four months later and here I am now sleeping, taking no pain meds and walking. Going for my first cat scan the end of this month,little bit nervous. Good thoughts and prayers are with you carol Quote Link to comment Share on other sites More sharing options...
David P Posted February 26, 2004 Share Posted February 26, 2004 Hi Allison. My surgery was too long ago for me to give any credible advice on recovery times. I just know that no matter how much lung they remove, if your husband is up to the challenge, and it will be a big challenge, he can beat this thing -- and stay healthy and live long and prosper. It became my number one priority, and I would highly recommend it to others. Take care, and keep us posted. David P. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 26, 2004 Share Posted February 26, 2004 Hi, Allison. I am so sorry this has come upon you all at your young age, but you can get through this. It is a roller coaster ride,but you can hang on and hang in. We are here with caring, support and info, so let us know how we can help you. And ramble, let off steam, anytime -- we do, too. Don Quote Link to comment Share on other sites More sharing options...
Guest Dorothy M. Posted February 26, 2004 Share Posted February 26, 2004 I'm sorry to hear about your situation- my prayers are with you and your family. Yes you are too young for this however, you have found yourself literally a world of support systems here. I know it has helped me tremendously in the past. I am a 47 year old nurse who was diagnosed with NSCLC (adenocarcinoma) 2 years ago- quite by accident. A pre employment physical took me right down- but it didn't take me out. It saved my life. A large tumor was found in my left upper lobe. I underwent surgery which ended up removing my entire lung and some lymph nodes, which scared me to no end and still does today. As far as the surgery goes, it sounds like you're husband is in good physical shape going into the surgery, so he should do well. That got me thru it with flying colors. Quite honestly, I was sitting up in a recliner in the ICU that very night making phone calls to friends and family, and wearing some makeup so my poor kids didn't think I was at death's door. A positive attitude will take you far. As far as pain goes, obviously that's subjective but I later had a hysterectomy that I would consider ten times more painful than the chest surgery. I think probably the hardest part is dealing with the children and family and just getting by day to day after the initial postop period. He can resume a normal life. I have been able to live as I've always lived, only now I don't take anything for granted anymore. Sometimes it can be a blessing in disguise if you adapt the right attitude. I was only in the hospital 4 days for my surgery, but since I had the whole lung removed, I didn't have the chest tubes, which prob. entail maybe an extra day or two. All in all, I was terrified going into it but came out of it with flying colors. I hope and pray that you have the same experience. Keep us posted. Dorothy M. Diagnosed 3/02 with adenocarcinoma Surgery 5/02 left pneumonectomy and lymph nodes removed No chemo./radiation Quote Link to comment Share on other sites More sharing options...
Hebbie Posted February 26, 2004 Share Posted February 26, 2004 Hi Dorothy, I see from your signature that you had no chemo/radiation -- were you Stage I? Quote Link to comment Share on other sites More sharing options...
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