alyssa0323 Posted January 13, 2009 Share Posted January 13, 2009 Hello everyone. I am reaching out and asking for help. Any advice and suggestions that you can give me would be soooo greatly appreciated. My mom was just diagnosed with Lung Cancer. She was admitted into the hospital a little over two week ago because she could not breath well at all. She has yet to come home. The dr's are trying to stop the fluid from coming back into her lungs which is being caused by the cancer, of course. The lung dr and cancer dr are both disagreeing on her care and prognosis. The lung dr told my sister today that he gives her 2-3 months to live. The cancer dr. is telling us that there are options to explore and that we cannot say how long she will live when all the avenues have yet to be explored. We are trying to stay positive for my mom but the lung dr. especially is bringing her down with every visit. We want him off her case immediately and are trying to find out how to go about that. We are not being nieve to what lies ahead... but we are trying to be positive and optimistic for her. If there is anyone out there that has or is beating this awful disease, will you please contact me and share your story!!! :0( I'm lost. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 13, 2009 Share Posted January 13, 2009 Alyssa Hello and welcome to the family! I am so sorry you have reason to be here but I am so glad you have posted so we can help! I agree that the lung doctor has to go!!!! Nobody can accurately predict how long your Mom has!! Don't pay any attention to the statistics! Your Mom is an individual and will respond uniquely to the treatments. We have members on this site who were diagnosed 12+ years ago and are still here and still living active and relatively healthy lives. Please give us more information about the type of lung cancer your Mom has as well as her treatments in order to give us all a better idea of what's going on. We are here for you and will continue to be here. Just let us know how we can help and know that there is always someone here to offer advice, information, support and HOPE... Warmly Christine Quote Link to comment Share on other sites More sharing options...
alyssa0323 Posted January 13, 2009 Author Share Posted January 13, 2009 The doctors are still in the process of running many tests. What we have been given so far is that she has small cell lung cancer, stage IIIb. Extensive and aggressive is what the lung doctor has told us. However, she is still in need of Pet scan to see if the cancer has spread. We are hoping to have that done soon... Thank you for everything! Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 13, 2009 Share Posted January 13, 2009 Alyssa Read through the small cell forum as well as the GOOD NEWS. I think you will find a lot of great information as well as a large dose of HOPE in those places. This is a very, very intense time with having just learned about the diagnosis etc. There is so much going on, so much information being tossed at you that it is just overwhelming. Please get a notebook or a small student organizer and write everything down. Questions for the dr's, their answers, test times, dates and results as well as asking for copies of EVERYTHING so you will have them for future reference or second opinions. (We are all for second opinions here!) Don't be afraid to ask questions. You are the best advocate for your Mom and knowledge is power! As I mentioned before, keep posting and let us know how we can help! Hugs to you Christine Quote Link to comment Share on other sites More sharing options...
alyssa0323 Posted January 13, 2009 Author Share Posted January 13, 2009 Thank you Christine. I will do all that you mentioned! Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 13, 2009 Share Posted January 13, 2009 Hi, Alyssa, welcome to the group. I agree with Christine that your mom (or you on her behalf) should get and keep copies of all her written reports — surgeries (if any), biopsies, scans, etc. And I definitely side with the approach of your cancer doctor (oncologist). Your mom may respond very well to chemo, and the picture may look a lot brighter in a few months. Once she begins treatment, the oncologist will be in charge of her care, and she may have little need to see the lung doctor (pulmonologist). My pulmonologist is a nice guy, but I've seen him only twice — back in 2006 when I was being diagnosed — while I've seen my oncologist or one of his associates every 3 or 4 weeks for the past 28 months. There appears to be a discrepancy in part of the information you received. The numbered stages (such as your mom's IIIb) are associated with non-small cell lung cancer (NSCLC), not small cell lung cancer (SCLC). It does make a difference in the treatment given. I started my cancer journey much like your mom, short of breath with a large collection of fluid between the lung and the chest wall (pleural effusion), and the same IIIb staging. If you're interested in the details, follow the link below. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
SandraL Posted January 14, 2009 Share Posted January 14, 2009 Hi Alyssa. I am sorry that you need to be here but you have come to the right place. Please do tell your mom that their are MANY of us out here fighting this disease successfully. Sounds like your mom's journey started off similar to mine with liquid on her lung which is presumably drained now. Mine never came back. And I have been on many treatments over the past year and a bit. My Story is in that section of this site. I agree, get rid of the horrid lung doc...don't need that. Some doctors just have no idea what an impact their words can have on our outlook. Very harmful when we need to have hope and get in fight mode. The beginning is so very very scary. As the med onc says, be a bit patient and explore all the treatment plan options available. Once a treatment plan is in place all will start to feel a bit better. Please keep us posted on how you and your mom are doing. Take care Sandra Quote Link to comment Share on other sites More sharing options...
alyssa0323 Posted January 14, 2009 Author Share Posted January 14, 2009 Your right Ned, I apologize. I have so many thoughts running through my head and cant seem to write them fast enough on paper. Originally the dr's told us that she had non-small cell stage IIIB, (the lung dr), now he is saying that he was wrong.. she has small cell cancer - extensive..... The lung dr. was again in the hospital room with my mom yesterday and was giving her his negative attitude again, bu tthis time, my sister who was also in the room, blew up at him. He says our family is in denial. That is not the case, our family is HOPEFUL... all the options and avenues have not been explored and I refuse to let my mom be another one of this dr's statistics. !!!! He originally told me my mom has 1-2 years, now he is saying 2-3 months. The cancer dr is optimistic that treatment will help her, not necessarily "cure" her but help her to live a long time.... All i want is a chance for her. :0( Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 14, 2009 Share Posted January 14, 2009 Alyssa I am SO SORRY you are still having to deal with that negative doctor! I am glad your sister blew up at him. It sure sounds like he could use a few good lessons in bedside manner and a course in optimism! What a shame he has to be involved. You just keep focusing on the HOPE because there definitely IS hope. As someone else pointed out, once you get the treatments underway you won't have to deal much with a lung doctor and that will be a blessing! Keep us posted!!!! Hugs Christine Quote Link to comment Share on other sites More sharing options...
Nick C Posted January 14, 2009 Share Posted January 14, 2009 I don't know if it makes you feel better, but it seems by nature, cancer doctors are hopeful treatment works...afterall, it's what they do. On the flip side, I think pulmonary docs see so many different things and probably in their experience feel they have more control in the non cancer situations and so maybe just feel less optimistic about what is somewhat out of their control. That said, I think it is fair to ask the doc to tone down the delivery while still delivering the info needed. I am sorry for the diagnosis, it is hard to fight for your mom and get all the info and read all the "odds". But odds are a joke...it's a bell curve, and sure there is an average...but individuals aren't averages...so truly try to not get too bogged down in that stuff. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 14, 2009 Share Posted January 14, 2009 Alyssa, I also started my cancer journey with fluid on the lung. Those of us for whom it did not come back are lucky, but there are procedures for sealing it so the fluid doesn't come back. Do you know if they've done them yet? I hope you are successful in getting a new lung doctor even though, as Ned said, you won't need him much once oncology takes over. Small cell or non small cell, we have survivors of all types of cancers on this site. It's way too early to believe a doomsdayer in your mom's case. Focus on that HOPE. Judy in Key West Quote Link to comment Share on other sites More sharing options...
alyssa0323 Posted January 14, 2009 Author Share Posted January 14, 2009 My mom is scheduled for a pleurodesis procedure tomorrow morning (1/15) God willing, she will get through it okay and that it will keep the fluid from coming back. She is having alot of pain and trouble breathing from this fluid that keeps returning. This weekend will be three weeks that she has been in the hospital. She was told that she has cancer the Monday before Christmas.. :0( She is such a strong woman Judy.. She put on a happy face and pushed through the holidays just so her family would be all together. She didnt want to go to the hospital that following weekend but we told her we werent giving her a choice... that she needed to go... I just cant lose her to this. I have a 7 month old daughter that needs to get to know her grammy ! :0) Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 14, 2009 Share Posted January 14, 2009 Alyssa There are a lot of members on here that have had this procedure done and it has gone very well and been very successful. You can use the search feature and type in pleurodesis procedure to see some of the posts regarding our members and their experiences with it. I know that several folks have posted about feeling so much better in short order afterward! Praying for you and Mom that will be the case for her as well. Keep us posted and let me know if I can do anything to help.. And hugs for that baby!!! Christine Quote Link to comment Share on other sites More sharing options...
alyssa0323 Posted January 14, 2009 Author Share Posted January 14, 2009 He will be taking a "back seat" from now on my mom's case and letting my mom's Oncologist take over from here !! And your right Ned, soon she will be only needing to deal with her Oncologist,thankfully ! He apologized for his less than favorable bedside manner towards my mom. He stated that he just wanted to make sure he is being realistic with my mom and our family. We are realistic, but we are also Hopeful and Optimistic. My mom is a fighter and I hope proves this lung doctor wrong ! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 14, 2009 Share Posted January 14, 2009 You go girl, that optomism will only help you. I can tell you from the personal point of view, don't underestimate the power of a grandchild to add incentive for your mom to keep fighting. Good luck to your mom and keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 14, 2009 Share Posted January 14, 2009 Okay, Alyssa, I'm starting to feel a lot better about this now. You too, huh? Ned Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 14, 2009 Share Posted January 14, 2009 I agree!!! Sounds like things are beginning to move in the right and POSITIVE direction now... Lovely picture by the way, what a gorgeous baby!!!!! Christine Quote Link to comment Share on other sites More sharing options...
Joe B Posted January 15, 2009 Share Posted January 15, 2009 Hi Alyssa, Get ahold of the pathology report. i do not belive it can be BOTh small cell and referred to as stage IIIb. That leads me to think it is NON small cell. That would be good as it has a much better prognosis than small cell. What area are you in? You need to find a NCI accredited cancer center in your area and run do not walk to get a second opinion. Places like the NIH in Bethesda , MD and Sloan Kettering on th eeast coast as well as MD Andersen in Texas are the best centers. Also, its a good idea to call Cancer Treatment Centers of America as they take a holistic approach and can certainly help you weed through the various options out there. I am 5.5 years out from a stage IIIa NSCLC diagnosis and am going strong (I even had a brain metasisis 2.5 years ago) Don't give up stay positive and do the things you can do to help your Mom. God Bless...Joe B Quote Link to comment Share on other sites More sharing options...
Joe B Posted January 15, 2009 Share Posted January 15, 2009 Moffit in Tampa is the only NCI accredited Cancer Center in Florida . they have one of the best lung cancer programs in the country. Thats were you should be.... here's the link http://www.moffitt.org/Site.aspx?spid=118E9FC4656A4C53B88400A358FA22A4 Quote Link to comment Share on other sites More sharing options...
alyssa0323 Posted January 16, 2009 Author Share Posted January 16, 2009 Thank you all very much for all the advice and concern !! My mom underwent that pleurodesis surgery and came through just fine yesterday! Thank GOD !!! And Joe, unfortunately, it is small cell cancer, extensive is what we are being told. The lung dr. told us wrong in the beginning. Also Joe, we are exploring Moffit Cancer Center in Tampa. That is the best place for her Im sure ! We are in the process of finding out when she can be discharged from the hospital that we admitted her into three weeks ago. We really have a great Oncologist, who is positive and optimistic with my mom. He refuses to give her a "time frame" of how much longer she can expect to live because he said that no one can accurately do that.... What a relief this dr is !! :0) Will keep everyone updated and you have no idea how much help you have been to me and my family!!!! :0) Quote Link to comment Share on other sites More sharing options...
alyssa0323 Posted January 16, 2009 Author Share Posted January 16, 2009 Thanks for the compliment!!! My daughter Rylan, is 7 months tomorrow!! I am a single mom to her but I believe she was put on this earth for motivation for my mom to fight this horrible disease... I brought the baby to the hospital the other night to see my mom and my mom just lit up automatically when she saw the baby!! Anything I can do to see her smile............. :0) Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 16, 2009 Share Posted January 16, 2009 Alyssa Thank you for the update! I am so happy to hear that your Mom came through the procedure so well!! Onward and upward now!! I have never heard anything bad about the Moffit Center. I truly believe that as long as your Mom is confident with her oncologist that is more than half the battle! If you are comfortable with the treatment plan then I say GO FOR IT and give it hell! Rylan is just beautiful and I am sure she will be an incredible inspiration for your Mom.. Keep us posted!!! Hugs Christine Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 16, 2009 Share Posted January 16, 2009 Alyssa, I'm so glad your mom is doing so well. Just at the outside chance she doesn't get into Moffit, there are other great centers in FL. Moffit wouldn't even talk to me without insurance so I am at MD Anderson in Orlando. It was my PCP's first recommendation. I don't know how the NCI works but it says on their website it is part of the National Institute of Health so I don't understand why I was turned away because of lack of insurance. MD Anderson in Orlando enjoys all the benefits of resources and research of the center in Texas. My oncologist, in fact, spent 10 years in Texas before becoming the head of medical oncology in Orlando. I agree with Christine. The most important thing may be the relationship with her oncologist. Judy in Key West Quote Link to comment Share on other sites More sharing options...
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