Lauri Posted October 16, 2003 Share Posted October 16, 2003 Hi, all. I desparately need some advice. I guess a little background would be helpful. I just found this site while searching around the internet trying to find out anything I could about lung cancer. I am glad that I did find it because I am having so much trouble dealing with this. My mother is 63 and very active all her life, including now. We are very close and my two children spend a great deal of time going places with her. She makes us laugh all the time. Lately she had trouble breathing and after a series of doctors' appointments (family, allergists(!), ear, nose and throat), she finally saw a pulmonary specialist who performed a lung PET scan. Last week, this scan revealed two "hot spots". One large tumor on the back of her upper right lung and an enlarged lymph node-very large. Tomorrow they are performing a VATS biopsy and we will know what exactly we are dealing with. She found out yesterday that she also has a "slow response" heart beat and surgery may not be an option. We need to see a cardiologist, too. She is depressed already, has started cleaning out her house, filling out donor cards and crying all the time. She lost both of her sisters (one to cancer and one to emphysema). She wants to stay close to home but depending on tomorrow's outcome, she may consider a cancer hospital further away. She just doesn't know which way to go or who to trust. Although I cry every day, I am trying to also gather information. I don't know what to do first! Please someone help direct me to finding out specifically how to help her select a great oncologist who will not give up her! Her doctor now has been optomistic but he's not an oncologist. I also need help telling my two daughters which I have put off pending the results of the biopsy. I figured I didn't have enough information for them to worry all week about it in school, etc...like I've worried. One is 16 and suspicious..she knows something is wrong. I need to tell her soon. The other is 8 and possibly oblivious to any signs of bad news coming her way. Should I tell them together? What exactly should I say? How would I begin? They are both EXTREMELY close to their grandmother and don't see her as a sick older person. Just someone who is strong, a lot of fun to be around and loves them each very much. I'm sorry this is so long. I've never dealt directly with cancer before but I want to fight it with every possible means available. It's just hard when my mom has just found out and she is going through all of her emotions and coming out extremely depressed, angry and confused. I don't know what to do or if I am handling this right. I try to tell her she has lots to live for, such as Melissa's graduation in two years, but that just makes her cry even harder. It doesn't seem to help much at all! I'm making her feel worse. I appreciate anyone who reads this and responds with any help or real direction at all. I've read some of your posts and I am so grateful that so many of you are doing well going down your paths of fighting cancer. I would love to have your advice if you can give any to me I dread tomorrow... Take care, Lauri Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 16, 2003 Share Posted October 16, 2003 Dear Lauri, My heart goes out to you and your family. I am sure that your mother is in the throes of original dianososis and will begin to get some fighting spirit. I see you are in NJ. We are in PA (outside Phila). We go to Fox Chase Cancer Center and find it to be a great hospital, dedicated only to cancer. Will add your mother to my prayer list. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted October 16, 2003 Share Posted October 16, 2003 Hi Lauri, Sorry to hear about your mother. Did you ask your regular doctor who he/she thought was a good oncologist? It is important to find out what type of cancer etc. your mother has. Below is a bunch of questions to ask. Have your mother talk to someone about her depression. Also join a support group for both of you. I would wait until you have all the facts before you tell your two daughters. Tell them together. Be open and direct about what has happened and what to expect when you tell them. Kids are very smart today and understand a lot more then when we were there age. Take one step at a time and one day at a time. Hang in there and never give up Hope this helps. Take care nand God bless. Rich The Wellness Community: (throughout the country) http://www.thewellnesscommunity.org From The ACS website: What kind of lung cancer do I have? Has my cancer spread beyond the primary site? What is the stage of my cancer and what does that mean in my case? What treatment choices do I have? What do you recommend and why? What is my expected survival rate, based on my cancer as you view it? What risks or side effects are there to the treatments you suggest? What are the chances of recurrence of my cancer with these treatment plans? What should I do to be ready for treatment? Would you please write down the exact type of lung cancer I have? May I have a copy of my pathology report? Has my cancer spread to lymph nodes or internal organs? What is the goal of this treatment? Will I lose my hair? If so, what can I do about it? Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 16, 2003 Share Posted October 16, 2003 Hi, Lauri. Sorry about your mom. On the question of telling your kids, DO it. They already know something is up and what they imagine, even the 8 year old, is worse than knowing. Trust them. And you can get support from them and give them support once it is out in the open. Tell them they suspect cancer but won't know until they do testing. And then keep them informed. You all need each other's support through this. Don Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted October 16, 2003 Share Posted October 16, 2003 Hi Lauri, I am so very sorry you have to be here, but you have found a great group of people for support and information. I know so much of what you are feeling. When my mom was diagnosed, I was so lost and didn't even know where to begin. First, take a deep breath and know there is hope...don't ever lose this. Second, here is a website that someone sent me that helped me to find an oncologist for my mom (she ended up only using this one for a second opinion): http://www3.cancer.gov/cancercenters/centerslist.html. Third, once you find out what type of cancer, stage, etc. and course of treatment this will truly help you focus. I felt completely out of control until my mom's treatment got underway and we had a plan of action. I have put my energy into researching any and all information for her, she doesn't have the energy. And I help her any other ways she needs. And tell your daughters! I think it is so very important to be honest. My parents have been completely honest with me and though it is heartbreaking to know how sick my mom is...I feel much more confident that they aren't hiding things from me and I in turn can fully deal with the situation. I am wishing you all the best. This is a difficult journey, but one that can be beaten and there is hope! Quote Link to comment Share on other sites More sharing options...
Hebbie Posted October 16, 2003 Share Posted October 16, 2003 Hi Lauri, I am sorry that you have to join us, but you will find much comfort and knowledge among this group. Welcome! I too am from New Jersey -- I don't know if you are from "North" or "South", but there are many wonderful hospitals in Philadelphia to consider for treatment. As someone above mentioned, there is FoxChase, which is dedicated to cancer. I believe that Dr. Cory Langer is the "top" lung oncologist over there. I myself had treatment at the Hospital at The University Of Pennsylvania (HUP), which has a wonderful Lung Cancer Center -- Dr. Larry Kaiser was my surgeon, Dr. Eli Glatstein is my radiation oncologist and Dr. Jamie Stevenson is my medical oncologist -- all wonderful doctors. Chosing the right doctor for your mom is important -- it's a combination of knowledge and personality -- if you don't feel comfortable with your doctor, it's not the right "match". I would encourage you to see at least two oncologist before making your decision. Get two recommendations for oncologist and set up the appointments quickly so you can make your decision and get the ball rolling! I wish you the best of luck through this journey!! Feel free to PM me at any time! Heather Quote Link to comment Share on other sites More sharing options...
Margaret Posted October 16, 2003 Share Posted October 16, 2003 Hi Lauri, I am about your Mom's age and the time of original diagnosis is so difficult. One's emotions are right on the surface and everything is so frightening. It gets better with knowledge. I would say don't hesitate to get second opinions...it is very important to feel confident of your doctor and the treatment course you decide on. I am a firm believer in an oncologist who specializes in lung cancer...you want someone who has seen it all. Once treatment starts you all will feel like you are getting control of life again. Your children will handle the information and they will be very happy to have a role in helping their Grandma through this. I would recommend that you go to www.blochcancer.org and read the newly diagnosed letter. Then take one step or day at a time and get all the information you need...never hesitate to ask or re-ask. Peace and blessings, Margaret Quote Link to comment Share on other sites More sharing options...
Snowflake Posted October 16, 2003 Share Posted October 16, 2003 Lauri, So sorry you have to walk this road...it's not the destination, it's the journey that counts - stop and smell the roses when you come to them. Cry yourself out and then set your mind to the task at hand. Release that pressure and give yourself the room for hope. As for telling the kids, tell them together, and since they are close to Gramma (the "patient"), have her there, too. I can tell you how MY family did the "telling" - at the time, our blended family consisted of his 25 y/o son (living close, but not our house nor his mother's), his 23 y/o daughter (living in CA, clear across the country), his 19 y/o daughter (she was living with us), his 17 y/o son (lives with his mother) and my 11 y/o son (also living with us). I told my mother first - she had my son while I had my biopsy and received the results. My husband and I mulled the whole thing over before beginning to tell the kids...(at this time, I told my ex-husband). Hubby's closer to the daughter who is far away and she was the first one he told (she's the most grown up one). We then set aside time for the two children living in our household and told them - reactions were different due to the age range. After the two living with us, we had his two boys over to tell them. He did not tell his children alone, I was there. I think it may be important for your mother to be there and to emphasize that she is not going to just give up, that she is going to fight this disease with all she has. I would not go into great detail with the children, the 8 y/o doesn't need the added "bad numbers" and the teenager can easily do a search and find out everything you could tell her. If she comes to you with what she has found, be honest with her, and STRESS that even if the odds are low, there IS the possibility of being on the positive side of the odds! I would suggest discussing an oncologist with the doctor your mother is comfortable with AND talking to friends/relatives that have experience with cancer to see who THEIR oncologist is and what they think of him/her. ...and if you choose a doctor that you later aren't happy with, go for a second, third, millionth opinion. I wish you all the best, Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
Lauri Posted October 16, 2003 Author Share Posted October 16, 2003 Wow, I am blown away by the responses received and touched that so many took the time to help me out. I thank you all so much! I have taken everything in like a sponge and am learning quite a lot here. Especially about the power of human caring and support. I don't feel so alone right now as I did all week. I'm scared to death about tomorrow, but knowledge is power and that's how I am choosing to deal with this even though I'd rather crawl into a hole and hide. Ginnyde - I live in South Jersey and, after I read your reply, I contacted Fox Chase and got all the information set aside. Thank you very, very much. They were very nice. Rich - My mother will surely ask about an oncologist from this surgeon she is seeing tomorrow. She loves this surgeon and has a great repoire with him. Her neighbor is a lung cancer survivor and he performed the surgery. I also printed those questions out and will take them with me tomorrow. Thanks for your help. Don - About when to tell the kids, I have truly struggled with that question and love to hear all advice on it. I do see your point 100%, too. Just didn't want the kids to worry about it in school. Thank you so much. Andrea - I'm sorry to hear we're in the same boat. Sounds like you have the right attitude and a close relationship with your mother, too, and it sure helps me to read your story. Thank you very much. Heather - We live pretty close to each other! I like in Elk Township, but worked in Cherry Hill as a paralegal up until June of last year. Now I am taking time to be at home with my children more and I go to college during the day. As for the information you gave....thank you. I agree that the "match" is so important, too. That means a lot to my mother, too. Thanks for your specific information....I am very grateful. Margaret - Thank you for your insights. I went to that website and printed out that letter. Wow! I felt better just going to that place....thank you! Becky - The "telling" to my children is an incredibly hard part right now. I'm sure we will do that this weekend. I'm not sure how well my mother will be feeling, but we need to get this out in the open ... thanks for sharing with me how your family handled it. I feel like I'm keeping a terrible secret from my children...it's not right. Thank you everyone for your kind words...I'm gonna be here for awhile and if I can offer some help to someone when I get through this horrible stage, I will be there for anyone! I will post again with any information I get. Surgery is at 9:30 tomorrow. I will probably be at the hospital all day as needed since she is spending the night. Please say a prayer for my wonderful mother and I will say a prayer for all of you tonight, too. Take care, Lauri Quote Link to comment Share on other sites More sharing options...
bobmc Posted October 16, 2003 Share Posted October 16, 2003 Hello Lauri; Also wanted to welcome you and let you know how very sorry I am that your mom was diagnosed with this terrible disease. I'm almost a 2 & 1/2 yr. survivor now but still remember the early days of anguish, confusion and anger at being diagnosed. It unfortunately goes with the disease and does effect the entire family. Yes, it's not fair but still we have to deal with it. The wonderful thing about this board is that you don't have to do it alone, others are with you, you will find much knowledge and caring people here. I live just a bit north of you in Northern NJ. I was operated on in Morristown, NJ and got second opinions at Sloan Kettering Cancer Institute. What you will find in this entire area is excellent Medical facilities and staff, Fox Chase as others have said is amoung the best. Get, information, write your questions down and by all means get second opinions. again welcome, sorry your here but also glad you found us God bless, be well and your mom will be in my prayers. Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
norme Posted October 16, 2003 Share Posted October 16, 2003 Lauri, Will be praying for your mom for tomorrow. Tell her to hang in there because there are a lot of cancer survivors on this board. My husband is stage IV and he is hanging in just great.... Our son told our grandchildren back when we found out. We are extremely close to them. We were not present. I think it would be rather stressful for your mom to be present the first time you talk with them but, that is only my opinion. You both will start to settle down just as soon as you know what type and stage of cancer she has and what the plans are to destroy the cancer. Once you start on the treatments, things tend to ease some... Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted October 17, 2003 Share Posted October 17, 2003 Lauri, I will keep your mother in my prayers today that the surgery is successful and that you get some good news about how to fight this beast. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Guest Posted October 18, 2003 Share Posted October 18, 2003 What an ordeal today has turned out to be. Mom's cancer is confirmed. Non-Small-Cell N2. The doctor actually called it "garden variety" cancer....unbelievable! Her VATS procedure turned out to be dreadful with two scary moments and several chest x-rays. She spent 5 hours in recovery before they admitted her into ICU for the night. She has a lot of pain that is being treated with morphine. The morphine has been interfering with respiration, hopefully, they won't have to intubate her tonight. They did NOT remove the single golf-ball sized tumor from her lung, but they DID remove the marble-sized lymph node that was deep in the root of her lung. My sister and I were told that her staging will be determined by an oncologist after more tests, but he felt she is a II or III since the cancer moved into a distant lymph node. He said that removing the tumor from the lung or removing the lung itself would not be an option for her. No surgery. Of course, we plan to follow up with a good oncologist, but I wish they would have removed the tumor while they were inside. I don't understand all of this yet, but I am trying! We told the children tonight. It was even harder than I expected it to be. But I had to get it over with. They both cried so hard, but I kept it together and told them we needed to battle this together...all of us. My teenager wants to go to the hospital tomorrow morning with me. After a long talk, I have agreed to it since ICU visits are limited to 20 minutes and I know she will put on a brave face and give her mom-mom a huge smile and sweet kiss. And, even though the news was deeply disturbing to her, she said she was glad I told her the truth. (thanks guys) After such a long day and a long weekend ahead of me, I am going to get some sleep now! I know that I am in good company here and all of you have been so supportive...I really do appreciate it and pray for all of us who are affected by this lousy, crappy, miserable disease. Take care, Lauri Quote Link to comment Share on other sites More sharing options...
Lauri Posted October 18, 2003 Author Share Posted October 18, 2003 Shoot! Looks like I sent in my last post as "Guest" since I didn't sign in before I submitted the post. Please have patience with me...I'm clearly a newbie ... Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 18, 2003 Share Posted October 18, 2003 Lauri, if you exit and don't log off, you will be permanently in log mode and not have to worry about logging in again. Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 18, 2003 Share Posted October 18, 2003 Lauri, This is an up and down roller coaster ride to be sure. My husband and I have been going through this since last November. He is stage IV and was given 2-6 months to live and is still here almost one year later!! This horrible disease can be beaten. Prayers for you and your children and of course your dear mom, Peg Quote Link to comment Share on other sites More sharing options...
karen335 Posted October 19, 2003 Share Posted October 19, 2003 Laurie, Prayers to you and your family. Your mom is a survivor, please remember that and keep the faith.... Glad to hear that you told your children. All will be ok, keep a positive attitude.... God Bless and praying for a "Cure" for all of us.... Karen Quote Link to comment Share on other sites More sharing options...
Lauri Posted October 20, 2003 Author Share Posted October 20, 2003 Hi again everybody! I have not had any time to post for the past few days. It's Monday afternoon and mom is finally being moved out of ICU after one heck of a long awful weekend there. I am having a hard time believing that she is having so much pain and complications from a VATS procedure, but she is. Her pain is severe and they cannot seem to locate where the leak in her lung is coming from. Since they did not open up her lung, they are "waiting and seeing" what happens. Anybody have any ideas in this area???? I know I don't. She also had a bout with subcutaneous crepitus Saturday night. Her face is blown up like a balloon ( a painful balloon) from air leaking in the her chest cavity that moved upwards. The resident doctor took x-rays and said no pneumothorax or dislodged tube...no ideas...but said it was a common complication that resolves itself over time...a few days. I have been at the hospital ALL weekend....the front desk volunteer at the hospital automatically smiles and pulls the ICU pass out as soon as she sees me enter the front door. Mom has been asking me about the biopsy results, but I told her the doctor has not really informed us of everything yet and that she needs to concentrate on getting out of the hospital. (my heart is breaking guys....just torn apart in little itty bitty bits (((((() Anyway, the little bit of joy I have experienced in the past two weeks came when I was able to make her laugh a little in her room. She has great spirit and spunk and I was able to bring it out for a few moments over the weekend and those were GREAT moments for me...seeing mom smile or laugh and then watching her get lovingly mad at me for making her laugh while she was miserable. The nurses love her and treat her very well...she never asks for anything but the nurses keep up with the special little touches just the same. Oh, and my daughter visited her in her room....she was a champ and I was extremely proud of her! Smiles all the way. She asked about the food and helped rearrange her pillows. And my mom, who at first didn't want her to come in, was very grateful to see her strength and smiles. Well my computer at home is soooo sloooow, I cannot possible post as much as I'd like to. I am overdue for a new computer but keep putting off making the big purchase. I have noticed that I an incapable of posting short, concise posts anyway...lol, so I'll just post long yet infrequent ones as a compromise! How is everyone doing? Please keep up the great support ...it's a one-of-a-kind place that everyone can seek help or just "get it off their chest", like I do sometimes. I do think of all of you and pray for you every night. Take care, Lauri Quote Link to comment Share on other sites More sharing options...
Ry Posted October 20, 2003 Share Posted October 20, 2003 Sorry to hear about your mom's complications. Hopefully she'll be home soon. Hang in there and let us know how she's doing. Quote Link to comment Share on other sites More sharing options...
karen335 Posted October 21, 2003 Share Posted October 21, 2003 Laurie, Praying for a speedy recovery for your mom.... Before you know it you'll be taking her hope to recoup. Praying for clean biopsy... Take care and keep the faith. God Bless and praying for a "Cure" for all of us.... Karen Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted October 27, 2003 Share Posted October 27, 2003 HI Laurie, First of all, so sorry to hear about your Mum. My Mum is 62 and was diagnosed with Non-small about two years ago. She did not have it in her Lymph nodes, but it was VERY high up on her left lung and they did surgery, then this year it moved into her spine, again surgery, both times they thought she might die in surgery etc etc, and she lived, so there is always hope and just hang in there. As for your daughters, I would tell them, they may get mad if your don't and especially your 16 year old, but them again, I don't know them and only you know what they can handle. *hugs* to you and your Mum! Quote Link to comment Share on other sites More sharing options...
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