Guest NowakowDA Posted June 4, 2004 Share Posted June 4, 2004 My name is Don. I am 53 years old. I was 52 untill the 31st of May then I got older. I've been lurking in the backround of this web site for the past two weeks. I finally decided to sign up. I'm a computer tech by training. (A+ cert and N+ cert). Well! This has been a very strange fourteen days. I found out today that my mother has lung cancer. The doctor said she has NSCLC in the upper lobe of her right lung. He said it has not spread and there appears to be "some" node involvment. My mother is almost 79. June 27th is her birthday. We live in Albuquerque, New Mexico. My mother worked for AAFES (Army and Airforce Exchange Service) off and on for the past thirty years. She finally retired in 2001 at the age of 76. This all started back on May 22nd. Mom (who's been living with me for the past several years) got hungrey so I opened up a large can of Campbell's Chunky soup and we had breakfast. I went out to do some work in the yard. When I cam back in the house. I found Mom standing in the doorway between her bedroom and bathroom crying!. She said that she could not remember how to close the bathroom door. At First, I thought she was having a stroke. I got her to bed and covered her up. Latter she tried to get up but she was week that I had to help her stand and lead her to the bathroom. Then, the feaver hit. It reached 100.8 and stayed their. About 5:30 in the evening, I convinced her it was time to go to the hospital. Got her in the car and got her to the emergency room. At first, they thought she had a bladder or kidney infection. After several tests they ruled this out. They decided to do an x-ray, thinking sh had pneumonia. That's when my world took a dive. The doctor said she had an abnormality on her right lung and they wanted to do a CT scan. So. about 12:30 Sundat morning the did the CT scan. They told me she had a mass on her right lung. They kept her in the hospital overnight for observation. They gave her saling in an Iv to get some fluid back into her body. She had some infection in her lung so they gave her Levaquin to try and clear it up. Sunday morning, they released her from the hospital with perscriptions for oxygen (2ltrs for 2 months) and 500mgs tablets of Levaquin. The doctor said he would amke an appointment with a pulminary specialist for her. On Thursday, May 27th I took her to see the pulminary doctor. He told her that he wanted to do a Bronchoscopy and get some tissue for a biopsy. He asked her if she was free tomorrow Friday the 28th. He did the procedure that Friday. We had to wait until today to find out the results. Mom has cancer. He said that she has a Non Small Cell Lung Cancer in the upper lobe of her right lung. He wouldn't of couldn't tell me what stage it was. He couldn't or wouldn't tell me what type of Non Small Cell Lung Cancer she had. He did say that the cancer has "not" spread out of her lung. He said that she has some lymph node involvement, but not the upper nodes around her neck. Exactly which nodes and how many are involved her didn't or couldn't say. They haven't done a biopsy on her lymph nodes. When I asked what they could do for treatment he said that radiation would probably be the best bet. He said that the treatment would have to be handled by a cancer specialist. When I asked about surgery, all he did was shake his head. He couldn't or wouldn't give me a reason why they could not do surgery. He told Mom that if untreated she would have from six months to a year. If the cancer was treated the prognosis would be open ended. He said that the radiation would "not" kill the tumor. but it would shrink it. The pulminary specialist tried to find a cancer specialist that would take Mom as a patient. The first docter said she was not taking any new patients right now. The second doctor said it would be a month before he could see a new patient. After waiting for about an hour they told us to go home and they would call us when they got Mom an appointment with a cancer specialist. I was totally pissed off to say the least! When I got home there was a message from Mom's primarry care provider at the UNM (University of New Mexico) Family Helath Clinic. I had sent him an e-mail yesterday (June 2nd) explaining what had happened to Mom during the past ten days. When He called back I told him what had happened at the pulminary specialist's office today. I told him that they had given her Levaquin to try and clear up the infection in her chest. The pulminary specialist said the infection was caused by the tumor partialy blocking one her airways. Her primary care specialist asked if they tried to relieve that blockage when they did the Bronchoscopy. I told him all they did was take a biopsy. At this point her primary care provider (Michael Servilla) asked me if Mom would mind going to the UNM Cancer Center. He said he would talk to a chest surgeon at the Caner Center to see if he could get an appointment. Michael called back within the hour and told me he had made Mom an appointment for June 10th, next Thursday with a surgeon who specializes in pulminary cancer. It took Michael one hour to get Mom an appointment at the University Cancer Center. I still haven't heard from the pulminary specialist. Michael said that the doctor at the Cancer Center wants to see Mom's CT scan, lung X-ray and the slides of the tissue taken during the Bronchoscopy. They want the view the tests results for themselves. The UNM Cancer Center is run the University of New Mexico Hospital. The pulminary specialist works for Presbyterian Hospital. Two seperate and "competing" hospitals. So tomorrow, I will go and see if I can get the X-ray, CT scan and tissues slide from Presbyterian Hospital and take them to the UNM Cancer Center. The only sign that Mom has cancer is the CT scan an x-ray showing the mass. She does not have any pain. She can breath deeply. She can hold her breath and breath rapdily without pain. She has no swelling or tenderness in his back shoulders, stomach or sides. She can lift her arms over her head and there is no swelling in her legs. She has lost a little weight (about five pounds) but her primary care provider said that this is nothing to worry over. It could be because I've been cooking her meals for her. I think he was trying to insult my cooking? She gets tired and needs to rest. The pulminary specialist who did the bronc said the the mass looked raw and inflamed. He said it would bleed a little if he pressed it with the scope. Mom trusts her primary care provider and wants to go the UNM Cancer Center. So that's where I'll take her. What happens next? I have no idea, but it's going to be a rough road. Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted June 4, 2004 Share Posted June 4, 2004 Don, Sorry you had to seek us out, but VERY glad you found us. I can think of no other place that has the amount of caring, informed folks as here. The good thing I read in your post was the involvment and commitment of your Mom's primary care doctor. Having a doctor who's willing and able to "get things done" is a BIG help in the battle. I know. I'm lucky enough to have one of those myself. Prayers for you and your Mom, and keep us informed. Dean Quote Link to comment Share on other sites More sharing options...
Guest HerSon Posted June 4, 2004 Share Posted June 4, 2004 A similar thing happened with my mom last November. She had problems breathing one night, and the ER found a mass which was diagnosed as NSCLC. You need to find out her stage, because it may be operable if below stage 3B, and if she has no co existing conditions that would make the surgery too risky. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 4, 2004 Share Posted June 4, 2004 Hi Don and WELCOME. I just loved how informative your post was. I can also tell right off that you are going to fit right in with this group with your good sense of humor and great attitude: I was 52 untill the 31st of May then I got older. It could be because I've been cooking her meals for her. I think he was trying to insult my cooking? And also, I am impresed: (A+ cert and N+ cert). HEY KAREN - DID YOU SEE THIS? (Karen is having computer problems. ) Don, I am sorry that you had to come here because of your mother's diagnosis. I am also sorry that you didn't get much help from the pulmonary doctor. I don't quite understand how he could know that the cancer hasn't spread outside the lung. That sounds pretty strange to me. Since pieces of the tumor break off and travel through the blood and settle in other parts of the body, I wonder how he could say such a thing. It could be something I don't know about because I don't know much that's for sure, but I don't think I've ever heard anyone make that determination from a chest x-ray and chest ct. Hmmmm - weird I think. I'm very, very encouraged to hear that your mom is feeling so much better now - no breathing difficulties, no pain, etc., and I assume the fever is gone. I bet you will get a lot more information from the Cancer Center. We will be praying for you and your mom, Don. What is your mom's name? God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Margaret Posted June 4, 2004 Share Posted June 4, 2004 Hi Don, Yes, it will be a rough road, but you'll have all of us here to support you. Once your Mom is with the Cancer Center, you'll get far more information and feel more in control. I don't think you have to be told to ask all the questions you can think of...sounds like you have a pretty good handle on how to approach this. I'll be watching for the progress post on your Mom and, in the meantime, prayers for a doctor with encouragement and determination to tackle this for you both. Oh, and welcome to this Board. Margaret Quote Link to comment Share on other sites More sharing options...
ginnyde Posted June 4, 2004 Share Posted June 4, 2004 Don, Welcome to the group no one wants to join, but, if needed, is the most amazing place. If you have been reading here, you will see that many people have to research a lot of doctors until they find the doctor or cancer center that they feel comfortable with. One where you get the answers and the care that you need and deserve. We pray for good results for your Mother. It sounds like she has a loving son to support her on this journey. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 4, 2004 Share Posted June 4, 2004 Don, Welcome to our little family. I'm sorry you have reason to join, but am glad you have found your way to us. Becky Quote Link to comment Share on other sites More sharing options...
Addie Posted June 4, 2004 Share Posted June 4, 2004 Welcome, Don.... It sounds like your mom has a great advocate (and son) in you! I too, am sorry you have to be here. I'm sorry ANY of us have to be here....but the fact is, this is a wonderful place to find support, caring, information and advice. Prayers for your mom and you, and please keep us posted on how she is doing. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 4, 2004 Share Posted June 4, 2004 Don, Welcome, I'm glad your primary opened doors for you. Sounds like HE cares. If your mother's health and state of tumor allow, there's no good reason to not undergo chemo or/and surgery unless your oncologist says so. Just because she's not young is no reason to not try. Glad you're in good company now, all around. XOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Hebbie Posted June 4, 2004 Share Posted June 4, 2004 Hi Don, and welcome to our family! You sound like a wonderfuly caring son and your mom is very fortunate to have you in her corner, working for the best treatment possible! I too was diagnosed with a NSCLC tumor in my upper right lobe, and some node involvement in my mediastinium (middle of the chest). I had surgery to remove the lobe and nodes and was staged at IIIA. They will most likely do a PET Scan of your mother to determine how much lymphnode involvment your mother has -- it is a very sensitive test and can pick up almost all cancer spots. My surgery was followed by 6 weeks of radiation and chemo (together). It was a difficult road, but one I would do over again in a heartbeat to accomplish the same results. I applaud your efforts to get the best care for your mom and the doctor you are going to see next week sounds like a good one. I pray that you and your mom receive the answers to all of your questions and formulate an attack plan as quickly as possible to get your mom on the road to recovery!!! Heather Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 4, 2004 Share Posted June 4, 2004 Hi, Don! Good name. Welcome to our forum here. Lots of support and info here. Glad you decided to post. My wife also has NSCLC and is 20 months from diagnosis and one year from primary treatment, so keep hope. I also applaud your advocacy for your mom. I believe every cancer patient needs an advocate to run interference for them. The patient is often too tired, too medicated, too much in pain to deal with it. You have been and I know you will continue to be that great advocate for her. When you run into snags, seek other avenues. Don't stay with systems that neglect or delay her. It sounds like your primary doc and the university system are the ticket. I imagine the doc said "no surgery" because he believes it is in the nodes outside the lung. Normally, surgery for cancer is only done if it is contained in the primary site. If you are going to pick up records for your mom, you may want to have a signed note from her that she consents for you to do so. Because of recent privacy laws, hospitals can be sticklers for that. I take a signed note from my wife whenever I pick up scans, records, etc. This group here is the best at support and information, so please keep us posted on your feelings, your thoughts and your questions. We will help where we can. Blessings. Don W. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted June 8, 2004 Share Posted June 8, 2004 Don, what is going on this week with your Mom? I also love your sense of humor. that will get you through some tough times. You should like a wonderful son and your Mom sounds like someone I'd like to sit down with and hear stories. we lived in Albuquerque for three years when I was a kid. I absolutely loved it. When we moved back east I think I cried our way across the country. Drove my Dad insane. God Bless, Karen C. Quote Link to comment Share on other sites More sharing options...
J.C. Posted June 8, 2004 Share Posted June 8, 2004 Don, You good good answers from others in this forum, so all I will say is Good Luck and keep looking after your Mom and I am sure the meals are good. Keep us posted. J.C. Quote Link to comment Share on other sites More sharing options...
elnodel Posted June 9, 2004 Share Posted June 9, 2004 Welcome from another relative newcomer, Don. As the others have said, sorry that any of us have to be here but it's a wonderful group. And speaking of wonderful, your mother has a wonderful son -- and it sounds as if she also has a wonderful primary doctor. I'm so glad he went to bat for her and that you've found the university centre. Keeping up the good fight - I'm sure you'll be getting some real answers soon. And keep in touch with us to let us know how it's going. Ellen Quote Link to comment Share on other sites More sharing options...
elnodel Posted June 9, 2004 Share Posted June 9, 2004 Welcome from another relative newcomer, Don. As the others have said, sorry that any of us have to be here but it's a wonderful group. And speaking of wonderful, your mother has a wonderful son -- and it sounds as if she also has a wonderful primary doctor. I'm so glad he went to bat for her and that you've found the university centre. Keeping up the good fight - I'm sure you'll be getting some real answers soon. And keep in touch with us to let us know how it's going. Ellen Quote Link to comment Share on other sites More sharing options...
paddy Posted June 11, 2004 Share Posted June 11, 2004 Welcome Don, It sounds as if your Mom is in good hands with such a great son to keep an eye on her care and also with the concern of your primary doctor. I hope your Mom can see an oncologist and get treatment started as soon as possible. Sending you positive vibes. Paddy Quote Link to comment Share on other sites More sharing options...
Lisa O Posted June 13, 2004 Share Posted June 13, 2004 Hi Don.... Wow, You will sure be able to give the docs a great history. Welcome to the group. I know its hard to imagine, but you will come to get a handle on this diagnosis and deal with it in your own way. Your mom is very lucky to have you on her team. There are so many factors that play into what type of treatment we all receive. So many of us have had different combinations so it is hard to say which is in her future. I wish you both the best. Quote Link to comment Share on other sites More sharing options...
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