Turandottiness Posted November 22, 2007 Share Posted November 22, 2007 Hi My name is Nick Gill, and I have just joined this forum, seeking support as I face the disease of lung cancer. I'll just let you know where I'm currently at, because just putting it down in words I believe will help me come to terms with my current situation. I am of course full of questions, and i hope that maybe other people on this list will be willing to share their experiences and give me a bit of information and support. I am 59 years old, and currently living in Amsterdam, Netherlands. About six weeks ago I developed pneumonia (not entirely unexpected, since I am a heavy smoker and suffer from chronic bronchitis, which I tend to ignore). After a week of treatment with antibiotics, the pneumonia was showing little improvement, and my physician sent me for chest x-ray. This confirmed pneumonia, and I was put on a regimen of heavy-duty antibiotics. After a further 10 days, the pneumonia was improving markedly, and I was sent for a second x-ray. At this point my physician suggested to me that there might be something going on in addition to the pneumonia, as that x-ray showed an abnormality which was not consistent with the resolution of the pneumonia. I was referred to a lung specialist at the local hospital, who requested a further x-ray and blood work. The results of this third x-ray confirmed the presence of an abnormality in the lower lobe of the left lung, which was so situated that normal chest x-rays had difficulty in getting a good picture of it. The lung specialist gave me to understand that there was a significant possibility that this abnormality could represent a malignancy, and he therefore requested a CAT-scan. The CAT-scan was performed on Tuesday 20th, and yesterday (Wednesday 21st) I saw my specialist. He confirmed that in his opinion it was a cancer, and has scheduled me for a trans-thoracic CAT-assisted biopsy and a PET-scan next week, after which we will discuss treatment options etc. Although obviously not all the information is in yet, he was willing to say that in his opinion this was NSCLC, and probably Stage 1B, although the further tests would confirm the type and staging. Obviously this has been a fairly traumatic process, althogh I am over the initial shock and terror. Basically that happened three weeks ago, when my physician told me about the first observation of abnormality. I accepted then that lung cancer was a very real possibility, and yesterdays confirmation by the specialist did not come as a surprise. I have of course spent a lot of time in the last weeks researching the topic, and I realise that NSCLC Stage 1B is by no means the worst possible diagnosis, and I take comfort from published statistics on prognosis with this sort of diagnosis. I am of course highly impatient for more information from next week's tests, and have a great desire to make the right treatment decisions. I particularly want access to good evidence-based research on what treatment regime will give me: 1. The best long-term survival 2. The best quality of life. Since I do not speak Dutch, although resident in Amsterdam for the last nine months, I am unable to do the sort of library research in medical journals which I would like, and the journal articles I would like to access online are generally on subscription-only websites. I find this frustrating, as I do not have the money to subscribe to all the journals I would like to access. I wonder if anybody on this list can recommend the best two or three subscription sites which will give me access to the sort of peer-reviewed research that I need? I would be very pleased to correspond with anyone on this list who has been through the sort of experience I am now having, or who can give the sort of advice(?)/information which they themselves have found helpful. I am not particularly interested in "New Wave" or "Alternative" forms of therapy, although I am trying to keep an open mind . I am sustained in all of this by my fellows in recovery (I am an 18-year sober member of Alcoholics Anonymous), and by my faith in G_d as I understand Him. Looking forward to your correspondence Nick Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 22, 2007 Share Posted November 22, 2007 Welcome Nick. I hope you have family or good friends there in Amsterdam. This is a tough road and most all of us need support but it is doable. Very soon I will be a 10 year survivor with no evidence of disease. This site has a lot of info. esp under know the facts and glossary. We have a wonder lung cancer specialist Dr. West and he also has a web site with lots of facts. Knowledge is power. Keep us posted. DonnaG Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 22, 2007 Share Posted November 22, 2007 Nick welcome to the place where no one wants to be but is glad they are under the circumstances. These are a few of my research links that are free. Hate payin for things if I can avoid it also. Our resident Oncologist in Washington state has his own site great for info. http://www.onctalk.com/post/ and a few others that might help http://www.medscape.com/medscapetoday http://www.fda.gov/ http://www.nlm.nih.gov/medlineplus/medlineplus.html http://www.omnimedicalsearch.com/ http://www.fda.gov/cder/cancer/websitesframe.htm and off course the ever popular Google I am mod for new trials and new treatment forums here and If you need anything let me know and will see what I can find out for Ya. these are some great links for general info some more so in US than abroad but still great for info in general. Quote Link to comment Share on other sites More sharing options...
ernrol Posted November 22, 2007 Share Posted November 22, 2007 Nick, Welcome to the site. Until you get a biopsy you will not know for sure that it is cancer. Let’s pray that it isn’t. If it is it seems like you may have caught it very early. Randy has given you some good web sites. I will research my files and see if I can come up with more. I do believe in complementary forms of therapy. I will send you some of that. If you like I can add you to a list that I send some reports that I have done on the supplements that I take. Let me know if you would like that. I have been through chemo then 18 months of remission and now again chemo and have added radiation. I have only had three sessions of radiation, but so far over the last 2 years, four months I have not had a sick day. I think it may have to do with some of the things that I take and do. Keep us posted. You might try to fill out your profile, and then it will show up on each of your post if you want it to. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
chloesmom Posted November 22, 2007 Share Posted November 22, 2007 Nick, I had stage 1B more than 4 years ago. My treatment was an upper left lobectomy and then I chose to take the optional chemo, which was three rounds (9 treatments in all) of cisplatin/gemzar. Although I was devastated at the time, I took great comfort in reading the stories of the people on this board, and decided that if they can survive, I can survive too. I saw a therapist and took anti-anxiety medication for about a year, and then gradually tapered off the medications and no longer see my therapist. For the first two years post-surgery I had follow-up appointments with my surgeon every 3 months, which included a chest x-ray, now I have a CT and surgeon visit every year. I also am on an annual basis with my oncologist. My best advice to you is to get the surgery if possible, find out about the adjuvant chemo, and take good care of yourself afterwards. Start getting some exercise as soon as you can, eat the right things, get plenty of rest. And good luck, Cindy Quote Link to comment Share on other sites More sharing options...
Tom K Posted November 22, 2007 Share Posted November 22, 2007 If there is no metastatic disease outside of your left chest, your physicians may recommend surgery to remove the lower lobe of your left lung. As you probably already know, evidence indicates it will offer you the best chance for survival. It is a difficult surgery and it may take you several weeks to recover if they do a standard thoracotomey. If surgery is an option , you should ask your physicians if you are a candidate for a Video Assisted Thoracotomey (VAT). I have read that this is a less invasive procedure that reduces the recovery time and the pain associated with surgery. If your cancer is 1B, you may or may not be offered adjuvant chemo therapy. There is some controversy as to whether the risks of chemo are worth the small survival advantage seen in patients with 1B disease. You may want to do some in depth research before making decision about wheather or not to request adjuvant chemo. Whatever you do, please get a second opinion. You will be making decisions about the quality and quantity of your life. Most of your second opinion physicians will likely agree with your primary (all of mine did), but you will feel a lot more secure knowing you sought all the possible options. It’s like flying an airplane; you can do it with 1 engine, but it feels a lot safer with 2. Lung cancer is a very scary disease and you are already feeling the anxiety. Donna and Cindy are right to suggest you have somebody to confide in like a spouse a close friend or even a therapist. Good luck to you and please do not hesitate to ask questions of this group. They understand what you are feeling and the choice you have to make. They have first hand experiences with some of the therapies you will be offered. I know they helped me get started on this journey and they helped me keep my sanity when I thought I would go crazy with anxiety and worry. Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted November 22, 2007 Share Posted November 22, 2007 Welcome, Nick. Being Dutch, I do speak the language. Let me know if I can help you. Ellen. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted November 22, 2007 Share Posted November 22, 2007 Hello Nick Welcome to the site. Sending you wishes for nothing but the best. Please let us know how we can help Christine Quote Link to comment Share on other sites More sharing options...
Muriel Posted November 22, 2007 Share Posted November 22, 2007 Hello Nick and Welcome. I think you'll find lots of support here. My story is similar to yours. Dr. suspected pneumonia, 3 Xrays, CT scan, referred to a pulmonologist. Pet scan indicated cancer was just in upper right lobe. Saw surgeon. Surgery June 2003. Path. results were NSCLC, state 1B, squamous cell. Surgeon said no more treatment was necessary. Go home and forget about it all. I decided to see an oncologist. Adjuvant chemo for stage 1B was still fairly new and not yet the standard. I decided it would be safer to have chemo. 18 mo. later, despite the chemo, a tumor was found in my upper left lung. Did the same routine again. Same cancer, same stage, same type. Different drugs for chemo. Since then I've been fine. It's a scary, scary path. Anxiety medication is common and really helps a lot. We're here to offer support as you need/want it. Muriel Quote Link to comment Share on other sites More sharing options...
recce101 Posted November 22, 2007 Share Posted November 22, 2007 Hi, Nick, welcome to the LCSC! From your well-written post I'd say you have approached your situation in a balanced, intelligent manner and have received excellent medical assistance up to this point. I wholeheartedly agree with the advice of others who suggest onctalk.com as a primary source of authoritative medical information on lung cancer and its treatment. It's the only place I've found where people like you and me can get our individual questions answered by an internationally recognized lung cancer expert, usually within 24 hours. OncTalk complements this site, which excels in emotional support, coping skills, and the first-hand accounts of various treatments and side effects from those of us who have been there, done that. You'll recognize a number of LCSC members over at OncTalk, as we tend to go by the same usernames there as here. By the way, I'm intrigued by your username. Are you a Puccini enthusiast? Aloha, Ned Quote Link to comment Share on other sites More sharing options...
J.C. Posted November 23, 2007 Share Posted November 23, 2007 Hello Nick, You will find help in this forum, already Ellen B. is ready to help with the language and all the rest of the team gave you good ideas. Keep us posted on what will be done. Jackie Quote Link to comment Share on other sites More sharing options...
Judy-OK Posted November 23, 2007 Share Posted November 23, 2007 Welcome to a wonderful board full of very helpful people. Keep us updated on what is going on with you. Quote Link to comment Share on other sites More sharing options...
trish2418 Posted November 24, 2007 Share Posted November 24, 2007 Welcome, Nick. I'm sending prayers that your treatment goes well. Trish Quote Link to comment Share on other sites More sharing options...
Patti B Posted November 24, 2007 Share Posted November 24, 2007 Nick - Sending thoughts and prayers across the ocean to you. Please keep us posted on how you are doing. There are so many wonderful, caring people on this forum that are willing to help or just listen to you. By the way, I agree - Dr. West from www.onctalk.com is a godsend!! You will recognize some of us on those postings! You really should check him out. Hugs- Patti B Quote Link to comment Share on other sites More sharing options...
Don M Posted November 25, 2007 Share Posted November 25, 2007 Just want to say welcome Nick. Don M Quote Link to comment Share on other sites More sharing options...
barbara5452 Posted November 26, 2007 Share Posted November 26, 2007 Welcome Nick, keep us updated, if surgery is an option that is a good thing. Quote Link to comment Share on other sites More sharing options...
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