kdaru Posted October 17, 2004 Share Posted October 17, 2004 Hello, my name is Katie, and my Dad was just diagnosed with NSCLS via CT-guided biopsy last week. The whole mess started with a routine CXR 9/22 which showed a new 1" lesion in the R apex. CT showed this lesion plus two 1 cm lesions elsewhere in his lungs. All three lit up on PET, hence the biopsy. We're now anxiously awaiting his first onc appointment. This man is my hero, a WWII vet who just last week replaced two water heaters and fixed a leak in the water line. He's still strong at 82, but I get the feeling that his primary thinks it's game over, don't buy the big jar of mayonnaise. I'm kind of ticked now that we putzed around with this thing for almost a month, feels like we should be moving faster. Is this normal? Even waiting over the weekend for news of when his onc appointment will be has me chewing my nails. What if it's a month from now? How long will it take to get staged? What if we miss our window of opportunity, or everybody says, nah, he's too old? I have a medical background, and for lack of other ideas am studying up on NSCLC. He's going to the Mayo Clinic in Scottsdale, are they good? How can I best fight for him? Any advice appreciated. Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 17, 2004 Share Posted October 17, 2004 Katie- Sorry your Dad is ill and that you have to find the site. You'll meet alot of nice people here. From what I have seen in others posts the clinic you are going to is good, I personally don't know, I've only heard. When my tumor was found on xray then confirmed within a few days by CT Scan, I saw the thorasic surgeon within a week and was on the table in two weeks. It was so fast. I guess everyone moves at their own pass. I did flip out about the amount of time it was taking. The surgeon would have moved surgery up but he wanted me to quit smoking so it took two weeks to have surgery. Good luck! Quote Link to comment Share on other sites More sharing options...
mjb Posted October 17, 2004 Share Posted October 17, 2004 Katie - Sorry you have to be here but since you are, there are hundreds of kind people who will help. One of the best things you can do is read these boards and look for messages similar to what you're asking about. And continue doing that as new questions come up. You can also search them by keyword. And people will respond - you'll be hearing from others. There are a couple of oncologists on here as well who often make comments. It's also a great place to come when you need to vent! You can say anything here. I can't answer your question because we're dealing with a different type, but good luck to you and your father and God Bless. MJB Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted October 17, 2004 Share Posted October 17, 2004 Katie,Welcome aboard.You will find lots of caring and knowing people here.The time frame for staging etc. is different for everyone.You will need to be somewhat patient with the docs as there are a lot of diff. things that need to be done,however don't let them fall asleep on the job either.Any questions you have someone here has been there and done it.Also as you read all the diff.signatures attached to everyones posts you will find there are many survivors here. Quote Link to comment Share on other sites More sharing options...
gail p-m Posted October 17, 2004 Share Posted October 17, 2004 Katie Just because your Dad isn't "young", don't give up! My Dad was diagnosed at age 76 and he turned 80 in Feb. We've certainly had some "roller coaster" times but overall, he's done very well and has had a good quality of life during these years. During these years, he has been to Mexico with my family, gone on a cruise with his 4 grandchildren, daughters and their husbands and danced at his younger daughter's wedding. He still lives on his own and functions well. Chemo was a hard time but I moved in and he got through it. Radiation, for him, wasn't bad and very effective. Personally, I don't know much about the Mayo Scottsdale but I do know that the Mayo Clinic has a worldwide reputation. Make sure you're comfortable with the oncologist and their advice. That's so important. Never be afraid to seek a second opinion. And as you've probably noticed, there is a lot of experience and expertise on this board. So also continue to ask your questions and share your experiences with us. Good luck to you and your family. Gail p-m Quote Link to comment Share on other sites More sharing options...
stand4hope Posted October 17, 2004 Share Posted October 17, 2004 Hi Katie and a great big WELCOME to you! I'm sorry you have a reason to find us, but I know you will be glad you did. You will get the love and support and answers here that you are looking for. Please take time to read through some of the threads here, particularly in the NSCLC forum. You will find lots of information there. I know it's hard, but try to be calm and patient about the waiting. NSCLC is a slow-growing cancer, compared to SCLC which grows quite rapidly, so it will be ok to wait a bit for your appointment, but like Frank said, don't let them stretch it out too long. Please know that you are going to find many survivors here of NSCLC. When my husband's NSCLC was found, it was quite advanced, including 8 brain mets. Currently, he has it in his brain, bones, liver, pericardium, and, of course, his lung. The good part is that he is doing great, and I mean he is really doing well. We've had a rough year, but since mid-summer, after recovering from chemo and radiation, and after starting Iressa, he has rebounded and is doing very well. He works every day, took a 3-day motorcyle trip, racking up 1400 miles, takes care of our yard (about an acre), prunes trees, waxes his truck, and just keeps on keeping on. It sounds like your dad is in great physical health for his age, and since he put in those water heaters and is still doing physical labor, I just bet he's going to do very well with treatment. Performance status is very important, and it sounds like your dad's score is way up there, so he should do very well. Please keep us posted on his progress. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Nancy B Posted October 17, 2004 Share Posted October 17, 2004 Hi Katie, welcome, sorry you have to be here. When I was diagnosed with nsclc 4 years ago, in December, I finally had surgery on Feb. 10th. They had to do alot of scans, bone, abdomen, pelvic, to make sure it hadn't spread before they did surgery. NSC is very slow growing. This last time I was diagnosed last of April and had surgery June 2nd. They really thought it was probably nsc since that is what I had last time, but this time it was sc - which grows very quickly. But, after 4 rounds of chemo, I am all clear. They really need to do all their tests to properly treat and stage - I KNOW it seems like forever but it really is best that the docs know what they are dealing with. Just don't let anybody tell you he is too old. My Dad is 83 and still plays tennis 3 times a week. If you can, go to his appointments with him. I know my parents tend to just take the word of the doctor and go with it. Sometimes you need to step in and insist on things....treatment, etc. Please keep in touch and let us know how things are going. My prayers are with you and your Dad. Love and hugs, Nancy B Quote Link to comment Share on other sites More sharing options...
Kaffie Posted October 17, 2004 Share Posted October 17, 2004 Welcome Katie, I have to agree with the rest, don't let the docs persuade you. If your father's health is generally good with the exception of the cancer, there are most likely treatments for him. My father was very ill with other problems when he was diagnosed and we knew not to even attempt to put him through any kind of treatment, he wouldn't have survived. You know your father and once you have the facts you will have a feeling in your stomach about what to do. If he's playing tennis 3 times a week, he sounds pretty healthy to me Kathy Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 17, 2004 Share Posted October 17, 2004 Hi Katie, welcome. Many of us start this ride by seeing lots of doctors, and having lots of tests, PFTs, bone scans, radialogists, pulmonologists, onocologists etc. Depending on where the tumor or tumors are, how good your PFTs are, etc a plan is put in place. For me the best plan was chemo and radiation to shrink the tumor then surgery , and more chemo. That was 7 yrs ago, and I continue to keep my companion NED ( No evidence of disease) . Keep us posted what the plan is for your Dad. Donna G Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted October 17, 2004 Share Posted October 17, 2004 Don't give up, and don't let anyone else give up on him. Go to Sam's Club and get a REALLY big jar of mayonnaise. Glad you found this great site. Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted October 18, 2004 Share Posted October 18, 2004 Katie; as you see above there are all different procedures folks go thru...I can only add that things can be rushed too fast sometimes. I was rushed into surgery after diagnosis, with nothing but a bone scan (which I insisted on) to rule out other possible areas of involvement. I was naive then, but since I learned more I marveled that it luckily all worked out...(subsequent scans, order ed by onc. showed no more problem areas) but, ....it was just luck...we didnt really know at the time of surgery whether the tumor was an isolated one or not! sheesh... As our Oncodoc member informed me, many hospitals have the protocols in place to ensure all necessary scans, and thus the total picture of patients disease, are done and known BEFORE surgery can proceed. My surgeon obiously is not under any such rules...be a good thing to find out whether yours is. Seems to me at least the PET scan should be done (whole body)...probly more, check with oncologist ...he is the expert on this...(also, some hospitals have a "tumor board" , or multi-doctor panel to review and recomend best possible treatment.) These include docs from many different specialties in conference with each other, as I understand it. Ok....welcome to the group, and best of luck to you and Dad...and see the Oncologist before rushing into anything. Rich B. For more on this; search keywords like "protocols", "tumor boards", maybe... Quote Link to comment Share on other sites More sharing options...
David P Posted October 21, 2004 Share Posted October 21, 2004 Hi Katie, and welcome. Your father sounds just like mine -- it's going to take alot to punch his ticket. I'm sorry, but I have to admit, I did get a chuckle from reading part of your post. I have never heard "don't buy the big jar of mayo" before. TeeTaa beat me to what my advice was going to be, but I think you should go out and buy a CASE of the REALLY BIG mayo jars just to reinforce the idea that no one can determine when some one's time is up. And age has nothing to do with it. If you read through some past posts here on the message board, you will find plenty of examples of people who are around years after "the experts" said their time was due. I hope your dad likes mayonnaise. Take care Katie, and keep us posted. Quote Link to comment Share on other sites More sharing options...
kdaru Posted October 25, 2004 Author Share Posted October 25, 2004 Many thanks for all the kind responses and reassurances. Things are moving now, posted an update on the NSCLC board. No, Dad doesn't like mayonnaise (we're all on a perpetual low-fat diet b/c of Mom's cholesterol), but he's shown an affinity for peanut M&M's lately, perhaps I should go buy a case of that. Peanuts are healthy, right? And chocolate has antioxidants. Maybe two cases... Glad someone directed me to this board, y'all are a really special and courageous group of people. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 25, 2004 Share Posted October 25, 2004 Katie, My husband loved peanut M&M's. We called them hors d'oerves (sp). He ate a lot of them the last few months and I would just keep the bowl filled. I hope your father is doing well. 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.