mama4zach Posted January 28, 2005 Share Posted January 28, 2005 What I was trying to say is i am confused. I went to Johns Hopkins for my appt with the Dr. and to get all my pre-op done for the mediastinoscopy. When we got into disscussion, he said he was going to do the pulmonary resection and I said no, you told me mediastinoscopy. He said well I thought about it and if I find cancer then you will go for treatment with chemo, if I don't find cancer, I will go ahead with the resection. But i didn't know there would be a back up. I could not understand why the lung surgery if there is no cancer. Does anyone understand what I mean. I am just so scared. I have to be here for baby zach. His life without me really bothers me. If any of you have been to johns hopkins or any other hospital that does it this way, please let me know. Also. how bad is the actualy resection i know they cut under arm and around the back and go thru ribs but how is the pain, and every thing else that goes with it. I am sorry for being such a baby but I can not stand to be sick like this. Again, Thank you and God Bless you Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 28, 2005 Share Posted January 28, 2005 Hi. You are NOT being a baby, this is all scary! Are you sure he did not mean if he did not find cancer in the lymph nodes he would do the full surgery? I cannot answer you about the pain b/c I was not the one who had it done, but I CAN tell you that my mom said it was NOT anywhere as nearly bad as she expected it to be!! Quote Link to comment Share on other sites More sharing options...
mama4zach Posted January 28, 2005 Author Share Posted January 28, 2005 no i am sure he said if he finds no cancer on the mediastinoscopy the he will go ahead with the surgery to take the upper lobe where the mass is because they will not know what is without taking it out. If it is not cancer what is it???????? Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 28, 2005 Share Posted January 28, 2005 Nancy. Have they done a biopsy of the suspicious mass? A needle biopsy? And then put it under the scope to determine what it is? If not...why not? Is it in a place that cannot be biopsied? Did they say how big this mass is? In centimeters? Have you had a PET scan done? Did they do an initial CT and then a follow up CT a couple months later to look for growth? I would think that a needle biopsy would be done before the mediastinoscopy and possible resection. Please let me know. It sounds as if you need someone there with you at your appointments to help you to understand what is going on. Is there someone close to you who can come with you to your appointments? Or is there a person...a social worker or a patient advocate who can sit in with you at your appointments? You need to understand your treatmnent plans and be able to participate in the decision making. It is difficult to participate if you don't know what is put in front of you. Please call and ask for some help with this. Johns Hopkins will have these services available to you. And take a deep breath. Everything is going to be all right. Cindi o'h Quote Link to comment Share on other sites More sharing options...
chloesmom Posted January 28, 2005 Share Posted January 28, 2005 Here's what it sounds like to me: Surgeon wants to check lymph nodes via mediastinoscopy to determine if there is any lymph node involvement. If there is, he may not feel that putting you through the major surgery to remove a lobe of your lung is wise. If not, he will proceed to removal of the mass, have a frozen section done to determine what the mass is, and then, based on that information, will remove an entire lobe, or if it is a benign mass, just do the wedge resection and be done. When I had my surgery, there was no needle biopsy--the surgeon said they are way too dangerous and whatever that was it needed to come out anyway. He did not do a mediastinoscopy, but did do a bronchoscopy prior to opening my chest to look at my windpipe and bronchial tubes leading to the lungs and the nodes in the center of my chest. Once they were all clear and he had the samples of the nodes he wanted, they did the thorocotomy. Just my experience, for what it's worth, but there is not always a biopsy, and sometimes, they do a less invasive procedure to see whether major surgery is in the best interest of the patient. Cindy Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 28, 2005 Share Posted January 28, 2005 Hi I'm not sure why they are doing what they are doing without all of the medical information but my dad is being seen at Hopkins for his cancer and they really seem to know what they are doing. Who is your doctor? My dad had Dr. Yang as his surgeon. Feel free to email me at home with any other questions........ Quote Link to comment Share on other sites More sharing options...
Elaine Posted January 28, 2005 Share Posted January 28, 2005 It seems he is basing this decision on the results of the tests you took yesterday. You have the right to get copies of those results and in those results you may find the answer. Call them and arrange to pick them up. THere are many things it could be, however. Let us know. elaine Quote Link to comment Share on other sites More sharing options...
stand4hope Posted January 29, 2005 Share Posted January 29, 2005 Nancy, My knowledge on this subject is zip, so I have no advice. I can only sense your desperation and just wanted to you to know that you will be in my prayers. Love, Peggy Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 29, 2005 Share Posted January 29, 2005 I wrote a long response to this last night, but it didn't take. I suspect that the reason the doc isn't doing a fine needle aspiration biopsy is because he is an expert, and he wants to remove the tumor intact and undisturbed because he knows that there is a very real and well documented risk for the seeding of maligant cells along the needle tract. Wish my docs had been this careful with me when I was first diagnosed. The mediastinoscopy was done to insure that the cancer had not spread from the lung, and for me in the first big thoracotomy, it was done just before the surgery to remove tumors from the upper and lower lobes of the right lung. I've had this surgery three times on my right lung. I now have only my left lung, but if I needed it, and the docs were willing to do it I would have this operation done again in a heartbeat if it would give me a better chance at being able to live longer. You will need help to take care of your grandson while you recover. You won't be able to lift him-or anything else-for about 6 weeks or so, if they do the standard thoracotomy. It's a very rough operation to recover from. But the docs have good pain meds and good delivery systems. I've always been told that if you are considered operable then this is the best way to go. When I was diagnosed I wondered if I would be alive to see my youngest graduate High School. I'm now planning to attend her College Graduation. I don't see why you can't do the same with Zach. Someone HAS to fall in the Long Term Survivor Group. Make up your mind that you will do what you must to be one. Send me your phone number in a private message. I'll call you if you want me to. Quote Link to comment Share on other sites More sharing options...
paddy Posted January 29, 2005 Share Posted January 29, 2005 No Baby Here! Just a courageous and concerned Mom . My prayers and positive thoughts are with you. Love, Paddy Quote Link to comment Share on other sites More sharing options...
Elaine Posted January 29, 2005 Share Posted January 29, 2005 I thiink what he means is that if the mass(IF it is cancer) has not spread to the lymph nodes, then he will take out the lobe to see for sure the mass is not cancer. I think I read that you already had a needle biopsy that turned out negative? If that is the case, then I guess based on the other tests you had, they still aren't sure and it's better to be safe than sorry. It really is a good thing that they are being aggressive even if it sounds like a horrible ordeal Everyone else has given you good advice about the surgery. I wish you well and let us know. Lots of people here have been through this and can offer you support and answer questions. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
Don M Posted January 29, 2005 Share Posted January 29, 2005 Nancy: Once I made up my mind to have my upper left lobe removed, the waiting for the operation was the hardest part. I had a bronchosopy, a lung needle biopsy and a PET scan before the surgery. The first 2 tests were inconclusive. The PET scan lit up the mass and showed me to very likely have cancer. They did not know the extent of it going into surgery. The first thng they did was to biopsy my lymph nodes at the mediastinal area. If they were cancerous, I would have been put back together and put on chemo after healing. My mediastinal area was clear. The next thing they did was to biopsy a suspicious nodule at the bottom of my left lung. If it was cancerous, l would have lost my whole lung. The nodule was benign, so they proceeded to do the upper left lobectomy. After the operation, my lobe was biopsied to determine cancer type and to see if any nodes in the lobe itself had cancer. If the nodes had cancer, I would have gone on chemo. The nodes were clear. It was determined that the cancer was confned to the mass itelf. I was staged IB because of the size. I think I could have chosen not to do the PET scan, but then the next step would have been to have an operation to explore the pathology. Eventually, during the course of the operation, they would have removed the entire upper left lobe. The pain was well managed. I had an epidural. Be sure to ask for one. I had my operation in Jan 2004. I feel fine now. It took me about 5 months before I was fully recovered. I have lost some lung capacity, but have most of it back. I just can't huff and puff up steep mountainsides like I used to do. Maybe if I lost 30 pounds I would do better. Quote Link to comment Share on other sites More sharing options...
chloesmom Posted January 29, 2005 Share Posted January 29, 2005 Nancy, When all this started with me, I was so terrified that I barely remembered being at doctor's appointments. I couldn't remember what the PET scan looked like, even though I was in it for about an hour. It's just so terrifying, it's no wonder that you leave the doctor's office more confused and more afraid than when you went in. Can you take someone with you who is better able to ask questions and listen to the answers? That helped me. I remember my surgeon talking about maybe only cutting a small incision right in the notch of my collarbone and looking down with a scope-- I later learned he was talking about the mediastinoscopy. He was talking about that because based on the CT scan, he thought my nodes were borderline enlarged and if they were positive, then he wouldn't be doing surgery. This of course, I found out much much later. The PET lit up nothing but the mass in my lung, so we went ahead with surgery. Point is, this is all foreign territory to us when we're first diagnosed. Good luck, Cindy Quote Link to comment Share on other sites More sharing options...
mama4zach Posted January 30, 2005 Author Share Posted January 30, 2005 After I went to the dr at Hopkins on Wednesday I guess I was in shock. I have the very best dr at Hopkins and I called my primary dr thurs and he had me to call hopkins dr to have him to confer with. My primary dr said it was fine what hopkins was gonna do because all of my test have been negative and they have to know what this thing is growing in my lung. So I probably won't be on the board for awhile as I leave tomorrow for a early 6am surgery at hopkins. But I want to thank each and every one of you who have helped me thru some difficult times. A big thank you to Tammy who called me because we found out that her dad's dr and my dr were the same dr. Oh well, it is a small world. Pray for me guys. I got to get thru this somehow someway. Love and Prayers Nancy Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 30, 2005 Share Posted January 30, 2005 Nancy, You have been through so much! Too much. Of course you have been in shock. You have been under undue stress now for a long time. Decision making can be difficult if not impossible. I do hear you say that you have confidence in your surgeon.. that means so much when you turn over the process to him. That leaves you off the hook. You only need to show up. I am sure that they are taking extra good care of you because of your circumstances. Please know that I will keep you in my prayers for nothing but the best outcome for you. You will get through this. And when you do, come back and let us know how everything went. hugs to you, Nancy. Cindi o'h Quote Link to comment Share on other sites More sharing options...
J.C. Posted January 30, 2005 Share Posted January 30, 2005 Nancy, Just sending you prayers. J.C. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted January 30, 2005 Share Posted January 30, 2005 Nancy, I know it's too late for you to see this before your surgery, but we will see you when you get back! Many prayers! Love, Peggy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.