patscan Posted September 15, 2006 Share Posted September 15, 2006 Last Saturday morning, my mom called me complaining of Shortness of Breath. When I arrived at her home, she was clearly in respiratory distress and had absent left lung sounds. A trip to the ER and 5 days later we are dealing with non-small cell lung cancer. CT scan shows a pleural effision, 1.8 cm mass in the left lower and 5 mm in left upper. Pathology confirmed the malignant cells in the pleural fluid (Stage IIIB/IV). Our first Oncology appointment is Tuesday. Not sure what to expect. My beautiful mom is 56 years old, heavy smoker since age 15. I am her number one biggest fan, her nurse adovcate and daughter, age 35. We both quit smoking last Saturday. Her biggest fear is her breathing...she continues to have SOB (and looking back realizes many other symptoms--cough, fatique, easily winded). Will the oncologist treat the SOB with oxygen, steorids, inhalers? I just want my mom to have some relief. Is it likely the fluid will build up again? The past 5 days have been horrific. The fear of losing her or her suffering is with me every waking moment. I just want her to be able to BREATHE-I know she is sooo scared. I'm battling between thinking like a nurse and being her daughter. Please pray for her. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 15, 2006 Share Posted September 15, 2006 Hello patscan and welcome I am so sorry about your mom's diagnosis, but you have come to the best place for support and help. Please feel free to ask ANY and ALL questions you have and know that the wonderful people here will help you as much as we can. One of the best pieces of advice I can offer is for you (or mom) to get a small notebook or an organizer to keep track of all the questions and tests etc that will be forthcoming. Write it ALL down so as not to forget. This is a very difficult time right after the initial diagnosis and it is so easy to get overwhelmed. Please try and remain calm and take care of yourself during this time, too. Your mom will need you and being healthy and rested is so important. Not easy to do of course but it is important. Remember to keep us all posted here and tell us what you need and how we can help you. Sending you and mom tons of prayers and positive thoughts, Chris Quote Link to comment Share on other sites More sharing options...
Don M Posted September 15, 2006 Share Posted September 15, 2006 Hi; your mom certainly has my prayers. So do you. Maybe your mom should see a pulmonologist to help with the breathing. Is your mom going to a comprehensive cancer center? If so, there should be a pulmonologist available as part of the team. Maybe you or your mom could call and emphasize the sob problem and set up an apointment the same day with the pulmonolgist. Perhaps the pleural effusion brought about the severe shortness of breath. If that is gone, she must have had some relief. Others on the board have had the effusion return and they eventually had to have a talc procedure done to make the lung stick to its lining thus denying the effusion a space to collect. I hope your mom starts treatment quickly. Having a plan in hand and implmenting it can relieve a lot of axiety. Speaking of which, many of us here take anti anxiety or anti depressant meds. Your mom might want to consider it. Her onc could write a Rx for her. I take lexapro, and it helps me. Don M Quote Link to comment Share on other sites More sharing options...
RandyW Posted September 16, 2006 Share Posted September 16, 2006 Fluid can be drained I believe. Not difficult as i recall unless i am thinking of different Fluid Build up. Surgery and recovery not too bad. there are a lot of Chemo options available for her. We have several long term 3B or 4 survivors here. go through Good News and Survivor forums if you have not already done so. Will give additional Support and Hope. Remeber thisis not the End Only the Beginning of a new path. W eare great at helping you find your way along that path. Quote Link to comment Share on other sites More sharing options...
michelepal Posted September 16, 2006 Share Posted September 16, 2006 I'm so so sorry about your Moms DX Lung Cancer just sucks! But it can be treated keep positived and never give up hope.. I will pray for your Family! (((HUGS))) Love, Michele Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 16, 2006 Share Posted September 16, 2006 Welcome. Prayers for your mom. Don Quote Link to comment Share on other sites More sharing options...
sharonjo Posted September 16, 2006 Share Posted September 16, 2006 Hi Patscan, I also went to the ER because I could not breathe and found I had a large pleural effusion. I had it drained (1400 cc's). I felt 100% better after that. My doctor said that getting treatment (chemo) should keep it from coming back. As you can see in my profile my treatment was very effective, and my effusion has not come back. I have talked to others that had to have a procedure to "glue" the pleura to the chest wall so the fluid would not build up again. I think it is called pleuridesis. Hopefully your mom will respond to treatment and she won't need the procedure. Did they drain her effusion? How is her hemoglobin? Did her scans show any emphysema? As you know any or all of these things could be causing or contributing to her SOB. I would discuss with her oncologist, and see what he thinks is causing it. It may improve once she starts chemo. Hang in there and try to stay strong. I will keep you and your mom in my prayers. God Bless, Sharon Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted September 16, 2006 Share Posted September 16, 2006 Hi Patscan, As the queen of SOB, I can tell you that there are so many things by themselves or in combo that can be causing the SOB. How bad is it? Is she able to walk to the kitchen without losing her breath? Able to toilet? Is she able to sleep comfortably? How is her heart? Some of us have pericardial effusions along with pleural effusions. Sometimes there are infections. I see this it seems esp. with sclc. How large was the effusion? Keep asking questions. We are here to help. Don't be afraid of another ER visit if her SOB is more than uncomfortable. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Raindog Posted September 16, 2006 Share Posted September 16, 2006 Hi Patscan, and welcome. Sorry you need to be here, however, this place is FULL of wonderful survivors and care givers with mountains of advice and inspiration! I know the fear and anxiety that you are going though, my Dad has Stage IV LC. The un-answered questions and waiting are SO difficult, Hang in there as best as you can. I assure you that you will feel MUCH better once your Mom gets on a treatment plan. That made a world of difference for me and my family! My prayers and thoughts for you and your lovely Mom. Warmest regards, -Rod Quote Link to comment Share on other sites More sharing options...
hollyanne Posted September 16, 2006 Share Posted September 16, 2006 Welcome - I am so sorry you are here. This disease is terrifying...yet you will feel a little sense of control once treatment gets started. Don M, Cindi O'h and other will give you the best first hand advice for SOB and treatments....the rest of us will give you whatever emotional support you need. Many, too many of us have gone through this with our moms who are/were our best friend. The panic for me never subsided, I was scared of what each morning would bring...yet I learned to cope with it better on some days than others. Arm yourself with as much info as you can...and love your mom each and every day. We are here for you. Holly Quote Link to comment Share on other sites More sharing options...
Welthy Posted September 16, 2006 Share Posted September 16, 2006 Patscan, So sorry you had to find us. I know what an overwhelming time this is for you and yours. Somehow we all manage to muddle through the initial shock and get into a routine. That will come for you too, although nothing ever really seems routine with lung cancer, more of a roller coaster ride. My husband, Tony was extremely SOB and couldn't walk from one room to another before he was diagnosed. His was a result of one of the tumors compressing part of one of his bronchial tubes to the left lung. Once he started chemo, the shrinkage took the tumor off and he was breathing better. We also have a lung specialist working with us to monitor his lungs along with the oncologist. He has emphysema also. During the course of his many chemos he had a reaction to long term use of taxotere and radiation. Pleural effusions began in both sides. This also made him SOB. He has been tapped 7 times. It's not a big deal and has made a difference in his breathing. He's basically been on oxygen 24/7 for most of the past 18 mos. At this point we opted not to have the "sealing" procedure done for his effusion, as we are being very conservative with his non-chemo treatment. His effusions have slowly begun to subside. Make sure you talk to the Doctors about all the possibilities. Tony's effusions have been free of cancer cells. Once your Mom begins chemo and it takes hold, it can make the effusion disappear also. Basically, hang in there and check out the people's bios on this board. They are tremendously helpful and give a realistic insight into what you can expect in the time ahead. It's a real challenge, but not without rewards. There will still be great times ahead for you and your Mother. May God bless you. Welthy... who didn't mean to be so long winded!! Quote Link to comment Share on other sites More sharing options...
marym Posted September 16, 2006 Share Posted September 16, 2006 Sorry for your need to find us. I hope all your questions can be answered. Mary Quote Link to comment Share on other sites More sharing options...
patscan Posted September 16, 2006 Author Share Posted September 16, 2006 I'm so thankful I found you...it has been helpful hearing about others' experiences. Our first appointment with the Oncologist is this Tuesday. Her PMD has ordered another CXR to see if the effusion is back...but Mom had to go to her favorite campground this weekend, so the CXR will have to wait until Monday. Again it has been so helpful to hear your stories, thank you for that. I've also started writing down my questions for the MD appointment (excellent advice), also comforted that some anxiety may pass after the treatment plan is in place. The wondering/guessing/speculating/ is the worse. Also found a great "wellness journal" online and Mom has been journaling when she feels like it. Again, thank you for your well wishes and sharing your stories. Candy Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 16, 2006 Share Posted September 16, 2006 [patscan] I'm so thankful I found you...it has been helpful hearing about others' experiences. Ditto for me. Isn't this a great discussion board! And so fast -- at least on my computer. As you can see from my profile, I'm about a week ahead of your mom and haven't yet started chemo. Another difference is that I quit smoking 43 years ago. But then, they say non-small cell lung cancer can be caused by things other than smoking. SOB is my main problem at the moment too, and as I await a few other tests and chemo (and possibly radiation) I was told to call my oncologist if the SOB got worse, and he'd set up another draining (thoracentecis) to relieve it. The first one removed almost a liter of fluid and definitely helped my breathing. Local anesthetic, no discomfort, I just sat on the edge of the table and watched the ultrasound screen as the radiologist guided in the needle. I could feel the pressure on the lung releasing as the fluid came out. If you add your chronology to the signature block in your profile, we can compare notes as we go through this thing together. Also, I've started posting in the NSCLC & Mesothelioma section as recommended by some old-timers here. Good luck, and aloha. Quote Link to comment Share on other sites More sharing options...
ma's kid Posted September 16, 2006 Share Posted September 16, 2006 Hi and welcome to the board! Please keep us updated on how your mom is doing and feel free to come here for whatever it is that you need..info, support or just to vent. Your mom is in my prayers. Libby Quote Link to comment Share on other sites More sharing options...
prairiecrow Posted September 17, 2006 Share Posted September 17, 2006 Hello, patscan: I'm new here myself, and just found out about my own mother's SCLC, so I know how it feels to be in shock over the discovery that something is so very wrong with someone you love. All I can really say is, hang in there and be sure to take good care of yourself. Eat, sleep, take little breaks when you can... a pretty hard prescription (I'm finding it very hard to follow!), but I think it's essential. Blessings to you and your mother, Laurie Quote Link to comment Share on other sites More sharing options...
patscan Posted September 19, 2006 Author Share Posted September 19, 2006 Mom's SOB increased this weekend. Another effusion. Although I begged the advice nurse for a clinic visit, instructed to go to ER. ER doc busy---did not feel it was an emergency and wanted to admit Mom. Mom did not want to spend the night in ER, we pushed back and they sent her home with Valium and a 0800 PULM appointment. Once we have a relationship with the PULM MD, we won't have to visit the ER and she can get "tapped" in the office. So tomorrow we will make 2 trips to the Hospital in the AM for the "draining" and the PM for the first ONC consultation. She's exhausted....really beat, but glad to be home tonight. Called my MD for valium--I'm having pain in my chest (anxiety). But we are all hanging tough. I bookmarked this site for her and when she has the energy she will check it out. I told her how helpful it is. So if you are reading this MOM...I LOVE YOU and I'm on your team. XOX Candy Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 19, 2006 Share Posted September 19, 2006 "patscan" ER doc busy---did not feel it was an emergency Candy -- you and your mom don't need that kind of hassle right now, that's for sure! I'm glad you stood your ground. I believe she'll feel a lot better after the draining Tuesday, and hope your oncology appointment gives you some reassurance. I'm seeing the radiation oncologist for the first time tomorrow and will update my profile after that. Best wishes and Aloha, Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 19, 2006 Share Posted September 19, 2006 Patscan,keeping you and your mom in our prayers. Quote Link to comment Share on other sites More sharing options...
ernrol Posted September 21, 2006 Share Posted September 21, 2006 Petscan, Your mom's cancer is very similar to my own. Mine was stage IIIb/IV nsclc inoperable and they could not use radiation. I have been cancer free since November 2005. Any way I can help let me know. Keep positive. Ernie Quote Link to comment Share on other sites More sharing options...
sharonjo Posted September 21, 2006 Share Posted September 21, 2006 Candy, I'm keeping you and your mom in my prayers. Stay strong! Sharon Quote Link to comment Share on other sites More sharing options...
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