dawnb72 Posted August 22, 2004 Share Posted August 22, 2004 My name is Dawn and my mother was recently (Aug 18th) diagnosed with SCLC. I honest to God dont know what to do. I have researched it extensivley and I feel that I know enough about the disease but I cannot seem to find any answers out there about survival rates. Are there any miracles happening out there that I can tell her about. She has not had the bone scan yet or the head ct. From her previous ct scan the doctor did say that she only had one tumor and is is localized in the right lung. He also said that her surounding organs looked clear. Is that good news? Should I be worried about her brain? I have her set up to start the Multidisiplinary Lung Cancer Treatment Program at the Markey Cancer Center in Lexington, KY. She starts chemo next week. Have any of you heard of that program? If so I would love to hear feedback on it. I would take her to the edge of the earth if anyone knows anything better out there. I would appreciate it if someone could answer my questions. I need some good news.......I feel as if I am going to lose my mother and I am too young for that. I am 31 yrs old and she is 59. She is my rock, my best friend in the world. She is also a crusader for Christ. She is too young to die. I know that I have rattled on and on, but I have so much to say and it is so much easier to write than to say......somehow it seems less real. Thanks for listening, Dawn. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted August 22, 2004 Share Posted August 22, 2004 This is one of the hardest times - when you begin to absorb the fact that your mom has cancer. I don't know if you've seen the R. A. Block cancer site but I think you might find it helpful. Please post at lchelp.com whenever you need to. We're all in this together. My prayers to you. Cat http://www.blochcancer.org/ Quotes from the site: "9,322,986 Americans are alive today with a history of serious cancer because they didn't give up hope and fought their disease. There are treatments for every kind of cancer. There is no cancer from which someone has not been cured. Cancer is the most curable of all chronic diseases." Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted August 22, 2004 Share Posted August 22, 2004 Welcome! I remember what a scary time this is..........right after diagnosis. Your Mom sounds like she might have small cell lung cancer in the limited stage......if it hasn't traveled to other organs. Here on lchelp.come we have CindyRN who has small cell extensive stage. I believe that Cindy has been in remission for about a year. Sounds encouraging to me.........Again, welcome. Hang around here and you will find much support and information. In my thoughts and prayers~~~ Angie Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted August 22, 2004 Share Posted August 22, 2004 Welcome, Dawn. You'll find a lot of information and hope here. SCLC can respond very well to treatment, so hang in there. My mom has the same disease and is currently in remission. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted August 22, 2004 Share Posted August 22, 2004 Hang in there!!!!!!! First off you were the age I was when my mom was diagnosed-mom was 58 when she died. That has been TEN years ago and many new treatments have come along. She had nsclc. I my self was diagnosed with extensive (spread to different organs) sclc back in 2/01 it is now 3 yrs 6 mos. ago and I am doing very well. I was 44 at the time of diagnosis. You do everything you can to get the Dr to keep on top of things, write down questions BEFORE the Dr visits and if he doesn't have time for them---FIND A NEW DR. If your mom is going to fight this she needs to stay positive-as should you. There lots of us out here with good track records. God has blessed me-I think to keep nagging others on here. Whatever the reason, make yourself at home and use the pm to contact anyone with questions. Love Cindy Quote Link to comment Share on other sites More sharing options...
Addie Posted August 22, 2004 Share Posted August 22, 2004 Dawn... A word or two about survival rates that you'll find on the internet: Ignore them!! Seriously!! The internet stats are pretty dismal and they don't reflect the most current rates of survival....and in any case, they can NOT tell you what course the disease will take with your mom. They stats on the web are outdated. And there are plenty of people here who have already far outlived the stats on their particular type or stage of cancer!! Our Cindy is a perfect example! I'm almost 58 and my kids are 25 and 30...so my situation is similar to your mom's. I was dx'd with limited stage sclc in May. I saw the stats on the internet and was feeling pretty bleak about my future prior to seeing my oncologist the first time. And then...sitting in his office, the onc said to me, "You know, this is curable!" I made him repeat himself. And when he did...I decided that THAT was the only "stat" I needed to consider.....that this IS curable. Mind you, he also said "no guarantees".....but then again, I don't have any guarantee that if I cross the street tomorrow, I won't get hit by a car or a beer truck....do I? A positive attitude is vital in the fight against cancer. I believe that completely. Each day we wake up...we are still alive and should be LIVING our lives with as much gusto and appreciation as we can. Someday....we all will reach the end of our lives....and when my time comes, I don't want to look back and feel like I spent all the time between my diagnosis of cancer up to my death, in misery...or fear....or NOT enjoying each day that I had, as much as possible. Having cancer and going thru treatment is not a complete cakewalk. There are days when it's harder to remain positive and days when my body feels like it's under attack from the treatment...but still, I fight to keep my optimism. I've finished 31 days of radiation and four cycles of chemo...and I can tell you quite honestly that I am feeling very good! I'm tolerating the treatments well, maintaining my weight and unless and until I am told otherwise, I'm STILL planning on being cured! I find great joy in being able to eat Chinese food again and keep it down...as during radiation the spicy stuff didn't settle very well! But it's funny now, how something as simple as General Tso chicken can make me so happy!! Knowledge is power.....so educate yourself and help your mom to do the same....but keep things always, on as positive a note as possible. I got so I just quit reading anything that was very negative or that caused me to feel fearful about this disease. A lot of the info that is out there may or MAY NOT apply to any individual case....and so I choose not to wallow too much in the "what ifs"....and rather, I try keep up with information that seems more likely to apply to my individual case...so that I can ask intelligent questions! Sometimes, the miracle in beating this disease IS attitude. It's the part that science cannot measure....but believing that it's possible to beat this beast has produced some survivors who were given a really dismal prognosis when diagnosed. So....stay strong and positive, and help your mom do the same! Best of luck and keep us posted. It sounds like you're being very proactive in helping to set up treatment for your mom...and this is great. Waiting for all the tests to rule out any distant metastases is hard...but try to remain patient and positive. The fact that treatment is set to start soon is also great. There are lots of good resources here...even if there aren't as many of us with sclc....so come back often when you have questions and let us know how things go with your mom. I'm sure she really appreciates having you there to help her through this! Quote Link to comment Share on other sites More sharing options...
Bill Posted August 22, 2004 Share Posted August 22, 2004 dawnb72 I have researched it extensivley and I feel that I know enough about the disease but I cannot seem to find any answers out there about survival rates. Are there any miracles happening out there that I can tell her about. ////////////////// IMO there are alot of variables that go into the outcome for a person with cancer. Prayer and / or luck, timing, type of cancer, location, treatment regimen, general health, genetics and so forth. IMO this disease still has more unknowns than knowns. Survival rate predictions and prognoses ( esp. those made early on ) are notoriously inaccurate. My wife has already outlived her first predicted life expectancy. The med onc made this prediction just after her second spine surgery but before radiation and chemo had even begun ! Sounded more like a statistical opinion. I hear alot of educated guessing, speculation and the like when I speak to these treating physicians. Maybe tell your mother about Lance Armstrong. I have no reason to doubt his story ( but check it out to your satisfaction ) and, if completely truthful, he went thru the usual treatment grind and appears to have beat his cancer. A mix of the above-mentioned variables clicked in his favor. Good luck. Quote Link to comment Share on other sites More sharing options...
SDianneB Posted August 23, 2004 Share Posted August 23, 2004 Well, of course there are miracles to tell about -- each and every one of us posting here is a miracle in one way or another. At least I think so! Ditto what Addie wrote -- she and I are very close in stories and timing, although I'm a little behind her schedule. I will admit that the "dread" side of the scale sometimes tends to get a little heavy, but when good sense returns, I remember that I'm blessed to just be here on earth anyway, for whatever time period that may be, and that I had no guarantees of even one more minute/hour/day at any point in my life, nor will I ever. I see my survival a day at a time -- just as I always did. My plans got put on hold when I got sick, but being a human, I will continue to plan for the future and hope for the best, but not fear the unknown as that's something I can't control. Best wishes to you, Dawn. Dianne Quote Link to comment Share on other sites More sharing options...
renee_ky Posted August 24, 2004 Share Posted August 24, 2004 Dawn- I really can not add much to what everyone else has sent you. But, I did want to tell you that my thoughts and prayers are with you and your Mom. I hope that no other areas are found in the upcoming tests. Renee Quote Link to comment Share on other sites More sharing options...
jamie Posted August 24, 2004 Share Posted August 24, 2004 Dawn, About the statistics... dont even worry about them. Read the stories on this board, and you will see that they are wrong... ALOT of the time! Welcome to the board.. if you need anything... you know where to find us Jamie Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted August 24, 2004 Share Posted August 24, 2004 first of all don't pay any attention to statistics. Go the the My Story forum on this board and read my husband's story (David C). Click on the link there that takes you to the article "The Median is Not the Message". It's hard to read but basically says don't pay attention to the statistics. why doom yourself (your mom)? If there is a 5% survival rate, for instance, mentally put your mom in that 5%. you probably have to wait until all the tests are done, but it sounds like your mom has limited SCLC. that's good. I don't know a thing about that cancer center, sorry. hang in there and updated us as the test results come in. p.s. please read our story - I really think it will help. Karen C. Quote Link to comment Share on other sites More sharing options...
Geri Posted August 25, 2004 Share Posted August 25, 2004 Hi Dawn, First thing to do is take a deep breath.......I am the same age as your mom and if you go to 'my story' you'll see Geri's tale. That's me. I'm almost 3 yrs from dx and I'm going great guns. I have no more signs of cancer and have not had any for a very long time. Yes there are miracles out there, more, I think than we know. I like to think that most survivors are probably like me..........too busy getting on with life to dwell on the fact that we've HAD cancer. It's very frightening right now, the what ifs will mess with your head...they do with all of us, but it's important not to let them rule your life. Everyone on this site knows how either you or your mom feels right now, take comfort that we are rooting for you both and there is life after a cancer dx. I know, I'm living mine to the fullest. Take care Geri Quote Link to comment Share on other sites More sharing options...
Bill Posted August 25, 2004 Share Posted August 25, 2004 dawnb72 She has not had the bone scan yet or the head ct. From her previous ct scan the doctor did say that she only had one tumor and is is localized in the right lung. He also said that her surounding organs looked clear. Is that good news? Should I be worried about her brain? ///////////////// You need to wait until there is some results to even worry about. Based on your post your mother has a single tumor in the right lung. IMO that usually carries a good prognosis. Most of the LCSC readers are dealing with metastatic cancer. Quite a different world. Should your mother have mets you can get some good input from this forum. Good luck. Quote Link to comment Share on other sites More sharing options...
john Posted August 25, 2004 Share Posted August 25, 2004 The news so far is at least fairly good, since it doenst seem like they have found metastasis (the cancer is only in the lungs) In some rare cases resection (removal) of the tumor is done for SCLC. If you mother is this lucky then I would ask about it. Usually chemo and radiation is given. Also check into clinical trials. Markey Cancer Center I heard is trying to become NCI designated, which means they are approved by the National cancer Institute as a cancer center. This is good. Did they do a PET scan or other scans to look for the cancer in other parts of her body? I imagine they did a biopsy to determine it is SCLC? http://www3.cancer.gov/cancercenters/centerslist.html http://www.clinicaltrials.gov Quote Link to comment Share on other sites More sharing options...
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