nyka69 Posted December 27, 2006 Share Posted December 27, 2006 Greetings to all of you! I have been reading the posts on this site for months (this is the best site on the web!). You've all been a great source of hope and valuable information. In case my signature isn't applied, here is our situation. My 46 year old husband was diagnosed with extensive sclc in September 2006. Until now, he has only been using natural therapies. We have our first appt. with an oncologist at MSK tomorrow. I have a list of questions, but want to be sure I don't miss anything. What are the key questions I should be asking? Thank you. My best wishes to you in your battle. Quote Link to comment Share on other sites More sharing options...
enyaw061032 Posted December 28, 2006 Share Posted December 28, 2006 Welcome to this loving family of lung cancer survivors, loved ones, and caretakers. You have come to a good place where you can get support and information and share yours. I think having someone with you at the time of the visit is important, and the written questions. Some could include: What stage cancer? What kind cancer (nonsmall cell or small cell) and the type under that heading - for example if it is nonsmall cell, is it bronchoalveolar or what? And if small cell - is it limited or extensive? What treatments would you recommend and why? Can surgery be performed after the cancer has been shrunk via chemo and/or radiation? Where all has the cancer spread? Is a PET scan recommended? What is the prognosis with treatment, and what is it without treatment? Suggestions you may make? Barb Quote Link to comment Share on other sites More sharing options...
blaze100 Posted December 28, 2006 Share Posted December 28, 2006 Hi Nyka, Your hubby has a large tumor - me too. I noticed that his came back as small cell. I think there was a posting yesterday from someone in Portland area who was dx'd as sclc...she was retested at a larger facility and it was not small cell but instead a carcinoid tumor which responds to different treatment and has better survival rates. From what I read on web search, carcinoid tumor cells can be mistaken for small cell. I mention this because you might ask onc for second independent test on bronchoscopy specimens. I think it is strange this tumor is so large and has not spread to other side. Anyway, it might be worthwhile to double check that hubby actually has sclc not carcinoid tumor before deciding on treatment path. Barb Quote Link to comment Share on other sites More sharing options...
blaze100 Posted December 28, 2006 Share Posted December 28, 2006 That posting was from Nancyf267. I will respond to her post and it should appear immediately above this post on the "messages posted since last visit list". Barb Quote Link to comment Share on other sites More sharing options...
P.S. I Love You Posted December 28, 2006 Share Posted December 28, 2006 Hey! Good luck today at MSK. The beast can be beaten. You two look strong enough to be able to do it. Best wishes, Kim & Bev Quote Link to comment Share on other sites More sharing options...
joanie55 Posted December 28, 2006 Share Posted December 28, 2006 Hi, Best wishes to you both. MSK is where I've been treated for almost 20 months. If I can be of any help, just let me know. Joan Quote Link to comment Share on other sites More sharing options...
teriw Posted December 29, 2006 Share Posted December 29, 2006 I'm so sorry to hear about your husband's diagnosis. I don't have specific questions for your onc, but my suggestion is this. Ask him to take the time to explain the type of cancer your husband has to you, the standard treatments, how the treatments will be measured, how the cancer typically behaves, etc. The idea being that you come away from the meeting with a solid grasp on what you're dealing with. We were a bit shell shocked at first and didn't ask enough questions, and have been playing catch-up as far as information seeking goes. Your husband is set to have the same chemo as mine -- he just had his first PET/CT since starting treatment and has had great results! I pray that your husband will too. All the best to you. Quote Link to comment Share on other sites More sharing options...
twodogs Posted December 29, 2006 Share Posted December 29, 2006 Hello, Your minds are probably so full of questions and concerns that they're running into and over each other. They're probably hitting you like a hail storm right about now. We've been at this for a while now and still have occasional questions. Way back when this all began we started writing down all our spontaneous questions wherever we were and whoever asked. Sometimes we used napkins and other times a pocket notebook which we still use. Later on we'd refine them and ask the doc's when next we saw them. Things pop up and then flee from our minds and keeping notes worked for us then and still does Good luck on your visit. We will all be pulling for you. Quote Link to comment Share on other sites More sharing options...
Lassie Posted December 29, 2006 Share Posted December 29, 2006 Welcome to this great place with tons of information and lots of folks with experience. I did as much homework as possible before going to the oncologist. I wrote all of my questions down so I would not forget them. I also had started my own alternative regieme prior to seeing the Oncologist. I ran each and every one by him. Right off the top he told me what for sure not to take and what he felt was safe and then what he was unsure of. I also have extensive small cell and have been in remission for a year and a half now. Good luck to you both and your in my prayers. ~Bummer~ Just looked at the date and realized your appt was today. Thought I would sent this anyway. Val Quote Link to comment Share on other sites More sharing options...
nyka69 Posted December 29, 2006 Author Share Posted December 29, 2006 Thanks to all of you. I brought my little notebook (I'm learning to carry it at all times) and was able to ask a lot of educated questions (thanks to reading these boards!) I'm just so relieved that treatment is finally going to start. Hubby has been feeling good and was afraid to do chemo because he didn't want to "get sick". We talked with the onc a lot about managing side effects and I think it put his mind at ease. It's still a long road ahead, but it helps to know that others have taken this path before us - unfortunately. Wishing you all a wonderdul New Year. Quote Link to comment Share on other sites More sharing options...
teriw Posted December 29, 2006 Share Posted December 29, 2006 I know everyone has different side effects with the chemo, but my hubby has done very well with the type of chemo your hubby is having. I was SO scared of him being extremely ill with it. The first cycle, he said the hardest thing was feeling total exhaustion. The second cycle, he felt a bit less tired. The third cycle he had 3 or 4 days of feeling quite sick. Other than that, he's felt good -- particularly the past few weeks. He's used the Emend each cycle, and has taken maybe 10 Zofran pills the entire time. Put it this way, if I didn't know he was sick, I wouldn't guess it. All the best to you both! I'm glad treatment is starting soon. Quote Link to comment Share on other sites More sharing options...
trish2418 Posted December 29, 2006 Share Posted December 29, 2006 I'm sorry you had the need to find us, but welcome to our community. I hope your husband's treatment is successful. Remember to take care of yourself through this process so you can take care of him. Happy New Year and keep us posted. Trish Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted December 29, 2006 Share Posted December 29, 2006 Here is a list of things that Katie B posted in another thread.... SOME THINGS TO ASK YOUR DOCTOR What type of lung cancer do I have? What stage is my cancer? Has my cancer spread to other parts of my body? What are my treatment options? Am I a candidate for radiation or surgery? Is this facility trained and familiar with my type of lung cancer? RESEARCH: Find out everything you can about your lung cancer. There are excellent resources online about L/C, hospitals, specialists, new treatments options, chemotherapy, radiation, RFA, Gamma Knife, PCI and the latest in clinical trials across the country. DO NOT let the statistics scare you. Put them on a shelf in the back of your mind and know that the survival rate is NOT “0” and that there ARE survivors! GET SUPPORT: From your family, church, workplace, and friends, you need all the support you can get. If there is not a L/C support group in your area, START one! Or you can Go online to www.lchelp.org and visit our message board for support from almost 3000 members! OTHER THINGS THAT YOU SHOULD KNOW. Keep a copy of your medical records. This will help you in your research and always come in handy if you should need to see another doctor or get a second opinion. FIND A DOCTOR WHO CARES ABOUT YOUR SURVIVAL! Tell your doctor EVERYTHING. It is important that your doctor know exactly how you feel, any and all side-effects, or new problems that occur. Quote Link to comment Share on other sites More sharing options...
ernrol Posted December 29, 2006 Share Posted December 29, 2006 Welcome, It is good your husband will be starting his treatment. I went to MSK for a second opinion. I was very satisfied with them. One of the nurses said that she had heard good things about a supplement that I was taking, AHCC. This pleased me, because so many say supplements and herbs will do no good. I see your husband was trying natural therapies. I take a lot of herbs and supplements. I can’t say any one works more than the other, but I think they do help. I think they are one of the reasons I never had any bad side effects. I was raised on Long Island, Garden City. We may be ex neighbors. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.