Yorktown Linda

Jim, I had an upper left lobectomy last June to remove a 2 cm adenocarcinoma. At the time, my CAT scans showed several smaller nodules ( 5 -10 mm), some in the lower left lung and some in the right. Two in the lower left were removed and biopsied -- originally as BAC and later re-diagnosed as AAH, an adenorcarcinoma precursor. All lymph nodes and margins were clear. Staging is a little uncertain -- would be 1A except for those darned smaller nodules, which may or not ever develop. The follow-up was a CAT scan every 3 to 4 months. February CAT scan showed a new growth in lower left lung (1 cm) and I am now scheduled for more surgery. The doctors at Sloan-Kettering say that this is the way they handle cancers such as mine and yours. They just watch and wait and if anything starts to grow, take it out. Have you had a PET scan? My small nodules don't light up on the PET and therefore are left alone. The 1 cm tumor did light up and needs to come out. In my humble opinion, if the spot on the right hasn't changed, there's no need to do anything, especially if it's small (i.e. < 10mm). That's what they tell me at Sloan. You might want to post on www.onctalk.com and ask Dr. West. He's very knowledgable and responds quite quickly. Best of luck, Linda

Max, I had my upper left lobe removed last May 31st and have had occasional sob ever since. My pulmonary function test is "mildly abnormal," so I don't think it's really a lung capacity issue. Originally I thought it was anxiety but I can't really document that. My internist thought maybe I had allergy related asthma but asthma medications did nothing for me so I stopped them. I still have bouts of shortness or breath but now I just tend to ignore them and they pass in a few minutes. Linda

Donna, I don't know about the hospital where your mom is, but when I had my surgery last year there were RNs to give meds and take vital signs but no nurses' aides at all. Getting a drink of water was a big deal. I sorta coerced the family into hanging around so somebody would be there if I needed anything, even though I slept most of the time and they just sat there bored and frustrated. I mentioned this to my bil's sister who is a nurse and she said next time call the patients' advocate (every hospital has one) and let the family get some rest. Have them save their energy for when you go home. That's when you'll really need them around the clock, at least for the first few days. I said that all I did was take pain meds and sleep when I first got home. My husband said that I have no idea how much work it was -- guess not, I was zonked out -- and that he never would have made it if my sister and bil hadn't come to stay for a few days. So maybe you want to take it easy now, spend time with your family and then give your mom the time you can spare when she first goes home. Just my 2 cents worth, Linda

Hey, thanks for all the suggestions. I wish I was crafty so I could make something. As for volunteering, I just don't have the time or energy -- I'm working full-time, I have a 28 yr old disabled daughter at home, and my husband works very long hours so I do most of the housekeeping stuff. I know, excuses, excuses! Anyway, I was thinking maybe a book, as that is my area of expertise. I'll speak to his office manager to see if he has any special interests. Or maybe he'd like a bunch Kris Carr's books to give out to patients. Thansk again, Linda

Here are a couple of non-profits in NYC: Common Ground Common Ground provides a comprehensive support system designed to help people regain lives of stability and independence. They start by creating communities where housing is safe, attractive and affordable and then add support services, such as access to medical and mental health care, job training, and job placement. commonground.org; 212.389.9334 Corporation for Supportive Housing Corporation for Supportive Housing (CSH) is a national, non-profit organization whose mission is to support the expansion of permanent supportive housing for people who are at risk of homelessness. CSH offers comprehensive services for those who face persistent mental health, substance abuse, and other chronic health difficulties, so that they are able to live with stability, autonomy, dignity, and reach their full potential. csh.org; 212.986.2966. What about her church? Many churches offer housing assistance, even to non-members who live in their communities. Hope you find something soon, Linda

Hey don't forget your local library -- as a librarian I can't help saying that. At my library we'd certainly be happy to get any or all of these books for you and it's free. You can look them over and then if you decide you want to buy one you'll know which one to buy. I personally like Crazy Sexy Cancer Tips. It's also a DVD but I haven't seen it yet so I can't comment on that. Amazon has the DVD for $15. Linda

Bucky, Yes this disease really sucks. I spent one day last weekend just lying in bed and crying. But the wonderful spirits of all the survivors here really helped me. I hope they and your shrink help you. Thinking of you, Linda

Okay, this is very unusual but I don't know quite what to do. I first met my oncologist after my first surgery lasy year. He visited me twice in the hospital and then began managing my care once I was discharged. I saw him in July and he arranged to take all my charts and scans to MSKCC where he volunteers once a week -- yes, he's that kind of guy. Since then I've seen him every 3 months -- he orders blood work and CAT scans and then discusses the results with me. (He and/or his office manager spent at least 1 hour on the phone trying to get approval for my last scan!) When I scheduled my next surgery, he said he'd come to the city (I live and he practises about 30 miles north of NYC) to see me. Anyway, he has never billed me! Now I know my insurance has paid $150 to $250 for shorter, less helpful dr's visits in the past, so I asked him to bill for his time. He said no as I wasn't in treatment with him -- i.e. no chemo. I will probably have this disease forever, see him every 3 months and never have chemo, so he'll never bill me. I don't know what to do. Yes, he's obviously not about the money but I want to do something. Should I send him a case of wine, a gift certificate to a local restaurant, what? Even though money is tight for me and, of course, insurance won't cover this, I want to do something. Any ideas? Linda

When someone asks me if I smoke, I always answer why do you ask? This puts them on the spot 'cause they're not going to answer that they just wanted to know if this is all my fault. I then go on to explain about the increasing number of lung cancer cases in non and ex smokers. I think people ask because it's such a shock and, if they are non-smokers, their first thought will be "Can I get that too? I don't smoke." I tried to talk to an acquaintance with breast cancer about this. She is firmly convinced that her cancer is all her fault because she was in an emotionally bad place at the time of diagnosis. I gently suggested counselling or a support group but as she is a 10 year survivor, she didn't feel the need. Anyway, I don't think people who ask really believe that we deserve lung cancer, I think their first thoughs are about themselves and their own risks. Pointing out that non-smokers are increasingly at risk may help get more support and research for us lung cancer victims. Linda

Saw the surgeon at Sloan-Kettering today and he said that a re-examination of my original pathology slides indicates that the smaller nodules are Atypical Adenomatous Hyperplasia (AAH) -- a precursor of adenocarcinoma and that the 2 bigger guys (2.5cm tumor removed last spring and a 1 cm tumor that I have now)are just little guys that got feisty. I'm scheduled for a wedge resection on May 16th or earlier if they can arrange it. Dr. Flores said that basically they will just keep an eye on the other lesions for now and see if they start to grow. Chemo at this point is unlikely but not toatlly ruled out. This is basically what Dr. West said on OncTalk.com and he's never seen me or my slides. What a smart man and how nice that he replied so quickly to my question. Thanks Ned for the referral!! Sadly, I'm not a VATS candidate because of previous surgery -- scar tissue could be a problem -- but this surgery and recovery should be easier than the last one. The surgery fellow -- don't remember his name-- said that if you have to have lung cancer mine was the type to have. The tumors tend to grow slowly, if at all, and can generally just be removed as needed. So I guess I'm as lucky as I can be and still be a part of this group. Linda

Susan, Thanks for the info. They've moved the link. It's now: http://www.practicalbioethics.org/FileU ... 121406.pdf I'm nowhere near the end of this journey but it's good stuff to think about. I think I'll fill it out (in?) slowly and keep it in the box with wills and insurance policies and such. I had enough trouble getting my husband to acknowledge my health care proxy before my last surgery, so I don't think I'll raise this with him yet. But it will be there, if life takes a surprising turn. Thanks again, Linda

Just sent one from Peekskill, NY -- about 40 miles north of NYC. Linda

Think I answered my own question: Just keep busy. Yesterday I was at work. I'm a referrence librarian in a small, depressed city just north of New York City. We're very busy as most of our population cannot afford computers and internet service at home. Then, after 3, we get the middle school kids who have no where else to go. So I didn't have a moment to think, let alone feel sorry for myself. I'll have to keep my weekends full until the surgery. Thanks for all your help and ideas, Linda

When I was first diagnosed, no problem -- it was one 2.5cmm tumor and surgery should fix that. Hard recovery from surgery but lymph nodes and margins were all clean. Drs felt the smaller nodules all over the place were bac and unlikely to do anything but sit there. So I had some rough days but soon it was back to life as usual. This new tumor has really thrown me. I want to enjoy what life I have but I can't seem to work up the energy. It just seems that I'll be defined by my cancer and its treatments and then I'll die. I know, I know; there's lot of good in my life. But right now I feel "so what?" I used to be the queen of denial but it's failing me now. What do you do to raise your spirits? Sorry to start the week with a downer, Linda

Okay, I saw Dr. Miller at MSKCC and he said the new mass in my lower left lung was 1 cm and definitely needs to come out. He scheduled a PET scan for April 2 and a surgical consultation for April 9 (Dr. Raja Flores, if that rings a bell for anyone). Anyway, I was reading some survivors' comments on their recovery from surgery and it made me feel like such a wimp. I had a thoracatomy -- don't know if that's because that was what the local doctor knew how to do or because in addition to removing the upper left lobe, he also did 2 wedge resections on the lower left. Anyway, I was on pain meds for months; went back to work part-time after 2 1/2 months, full-time after another month and it was way too early! It was a full 6 or 7 months before I began to feel normal again. I should add that before the cancer was found on a routine chest x-ray, I had never in my life felt healthier. So my surgical results were not due to any pre-existing weakness or condition. So I'm wondering, since this is only one small tumor and MSKCC certainly is set-up for VATS, should I expect a quicker recovery? Not sure I want to go through another few months like last time -- not that I may have any alternative. Thanks, Linda P.S. I am sooooooooo glad I found you guys!!!

Sorry you're going through all that. Just what you need on top on the cancer, right? I had a similar experience after my CAT scan showed a new growth. My oncologist wanted to wait six weeks and then repeat the CAT scan. The insurance company said "Why does she need a CAT scan; she just had one?" The most galling part was that with the rebate that the insurance company gets from the radiologist, they only pay $150 out of the $1200 bill! Anyway I read an article online called "When Your Insurance Company Wont Pay: 12 Tips" The URL is: http://thyroid.about.com/cs/newsresearc ... ncepay.htm In my case,tip #12 was the winner. My husband's company's insurance administrator switched from billing through Qualcomm to Blue Cross of California without notifying the employees. This resulted in a reduction of benefits and our needing prior approval where we never needed it before. His company is self-insured and we are therefore covered by the ERISA law. I contacted the NYS insurance dept. who referred me to the US Dept of Labor. They confirmed that failure to notify us of the change in insurance was a violation of the law. We took that to Human Resources and voila! the scan was approved. Results were not good, but that's another story. Best of luck. I know what you're going through and my thoughts and prayers are with tou. Linda

Hi John Yes, that's one of my questions. I'm perfectly healthy, execpt, of course, that I have lung cancer and am missing half a lung. My pulmonary function tests are only mildly abnormal and while I don't relish more surgery, I am perfectly capable of undergoing it. I don't know if Dr. Miller has any reason to believe the new growth is BAC like the litle nodules my prior surgeon said were "popping up all over" or adenocarcinoma like the larger one removed last spring. If BAC, why remove this one but not the ones in my right lung? I know Sloan-Kettering tested my pathology slides last summer for the EGFR mutation but I never got the results. Didn't seem important at the time. If adeno, then it seems to me some systemic treatment after surgery (or RFA) should be necessary. Even though margins and lymph nodes were clear, this tumor came from somewhere. Hard to believe I have a third primary lung cancer!! Anyway, I'll take it one day at a time and try to live with it as best I can. Linda

Thanks Katie. I've read the articles and have a good list of questions to take with me tomorrow. Linda

Well my oncologist spoke to Dr. Miller at Sloan-Kettering and he suggested either surgery or RFA. He wants to see my recent scans first, so it's on to Sloan-Kettering on Friday. I know about surgery -- took me months to recover from the first one. Can anyone share experiences with RFA? Thanks, Linda

Hi. My name is Linda and I have just joined this site. Here is my history (I guess I should add this to my signature, yes?): 4/19/07 spot found on routine chest xrsy 4/21/07 TB test negative 4/22/07 CAT scan showed 2.5 cm mass in upper left lung; several smaller (>5mm) nodules scattered through all lungs. 5/5/07 PET scan: 2.5 cm only positive finding 5/14/07 Biopsy: adenocarcinoma 5/31/07 Upper left lobotemy; 2 wedge resections on lower left lung. Pathology showed clean margins and lymph nodes; smaller nodules were non-mucinous BAC. 6/6/07 Bone scan and brain MRI both negative 6/29/07 no changes on CAT scan; CEA 2.0 7/29/07 At urging of my oncologist, consulted Dr. Vincent Miller at Memorial Sloan Kettering -- MSKCC --(expert on BAC). He recommended wait and see. 10/05/07 no changes on CAT scan; CEA 2.5 2/08/08 CAT scan: new small nodule lower left; CEA 5.5 3/21/08 CAT scan: same as 2/08 3/24/08 Oncologist wants to consult with Dr. Miller. Thinking about Tarceva Anyway, of course I'm scared and worried. Dr. is going to MSKCC today and will call me tomorrow. Linda