begonia Posted January 25, 2006 Share Posted January 25, 2006 We just got the diagnosis yesterday (1/24/06), pathology is not confirmed yet, surgeon did open lung biopsy. We hope to get more information tomorrow at her pulmonary appt. We have been through a medical nightmare, wait and see, wait and see. All we want is information. It is such a long drawn out process. The doctors need to put themselves in our shoes, waiting can sometimes cause more stress than the actual information. I think the dr's are afraid to be the one to break the news. We have been told it is cancer and stage IIIA, have any of you have medical nightmares in the beginning to find out the truth? By the way, I'm new and so glad I found this. I'm sorry my first post is negative but I feel better now that it is out. What can we do different? I'm up for suggestions. My mom keeps getting sicker and sicker. Valuable time has been wasted. They have been in no hurry to speed things along. Thanks for reading my post. I've enjoyed the message boards and the information. Gives me hope. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 25, 2006 Share Posted January 25, 2006 Welcome to the site. Take heart. There is a lot of waiting associated with lc. Don Quote Link to comment Share on other sites More sharing options...
kjude Posted January 25, 2006 Share Posted January 25, 2006 Yes there is A huge amount of waiting involved. Find something to read, I was amazed at how much I learned while " you hurry up to wait" Just hang in there. Welcome to the list. Judy Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 25, 2006 Share Posted January 25, 2006 Hi Begonia. Welcome. I am sorry that this has already been a long journey for you. There are some facilities that do have an expedited process for rapid diagnosis for lung cancer patients. You just needed to find one straight off the bat. I was fortunate. Within four days, I had a complete answer in my hands, from the time I showed up in the ER to the time that I was discharged from the hospital. From there it was a long and arduous journey, but I agree with you. Right now, it is complete and total pins and needles. I feel for your family. Ask more questions. We will help with the answers. Best of luck to your family through this. I needed some tranquilizers to get me through the first few days and my sisters "borrowed" half of them. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Nushka Posted January 25, 2006 Share Posted January 25, 2006 Welcome to the site. I am sorry you are going through all of this. I hope my profile will give you some hope. February will be 3 years since dx. March 10th will be 3 years since treatment started. Nina Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted January 25, 2006 Share Posted January 25, 2006 Welcome to our support family.There are many here that will be able to answer questions and help ou along the way. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 25, 2006 Share Posted January 25, 2006 The beginning of the trek is by far the hardest time, it seems slow and very scary. As time goes on it does get easier and you will adapt. Live one day at a time. Keep us updated. jim Quote Link to comment Share on other sites More sharing options...
Kasey Posted January 25, 2006 Share Posted January 25, 2006 Welcome Begonia, There is plenty you can do. Begin by researching all you can about what you know so far and never stop reading and looking. Ask questions here and search the net. Find a second opinion. Read the Profiles of the folks here in the NSCLC forum and see where they have been. Finally, go to the MY STORY forum and read stories of hope. Be sure to read mine. Fill in you Mother's Profile when you have the info available. That will be helpful in us offering assistance. This is not a journey you would have chosen, nevertheless you are on it. Be vigilant. We can help you along the way. Kasey Quote Link to comment Share on other sites More sharing options...
Maryanne Posted January 25, 2006 Share Posted January 25, 2006 Welcome here. Sorry you had to find us. As you can see, many responses is to investigate this disease while you wait. The waiting is the worse. But once you get the results and they start a plan, it will be so much better for her and you. We are always here to help you through this. Keep us posted. Hang in there. Maryanne Quote Link to comment Share on other sites More sharing options...
dchurchi Posted January 25, 2006 Share Posted January 25, 2006 Begonia, sorry you need us, but glad you found us. As others have stated the 1st couple of months are the worst. So many unanswered questions. once that is done a plan of attack will be set and then the fighting begins. My husband was diagnosed just over a year ago and the loving people on this board got me through some very tough times. we will all help you and your mom through this unfortunate journey. Keep coming back and let us know more about your mom's situation. Many prayers for your family. Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted January 25, 2006 Share Posted January 25, 2006 Hi Welcome, Sorry for what you are going through. I had IIIA and have been clean for 2 1/2 yrs. I was 50 yrs. old at the time and in good health other than the LC. Hope mom does well. This is a good place for support and info. Take care. Mare Quote Link to comment Share on other sites More sharing options...
francesbean Posted January 25, 2006 Share Posted January 25, 2006 Hello and welcome, Begonia. Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted January 25, 2006 Share Posted January 25, 2006 Welcome, Begonia. Ellen. Quote Link to comment Share on other sites More sharing options...
Don M Posted January 25, 2006 Share Posted January 25, 2006 Welcome Begonia. The waiting is the hardest paert. I hope you get a treatment plan soon. It gets beeter once a plan is being implemented. Don M Quote Link to comment Share on other sites More sharing options...
begonia Posted January 25, 2006 Author Share Posted January 25, 2006 Wow. I can't believe the responses, so quickly. Question, how do I profile my mom's condition and update it? Now, for today. Went to pulmonologist this morning, he is ordering more scans of stomach, belly area and bones to see if there is any spreading to those areas. He still didn't give us any more information that we knew before. He has scheduled her to come back to his office in a month to discuss her tests. sounds like a long time to me. I would think that he would want to see her next week once he gets the path report and the scans back. Is this unusual? Thanks for all the posts. I read every one. I'm 49 years old and live in North Carolina. Thanks again. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 25, 2006 Share Posted January 25, 2006 NO, Begonia, that is totally not acceptable. Find another avenue. Check with the local hospitals to see if they have a thoracic cancer diagnostic program in place. See if there is a cancer center at a University Center. See about getting in touch with a thoracic surgeon. Is she well connected with her primary doctor? Maybe this "good" doctor can help sift through the maze. It is heart wrenching to hear that this doctor is putting a diagnosis on hold for this long. Cancer patients want a diagnosis and started on therapy, if for no other reason than peace of mind. I urge you to get on the horn and get something started in a place where Mom and rest of family feel cared for. Cindi o'h Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted January 25, 2006 Share Posted January 25, 2006 I agree with Cindi. Totally unacceptable. Find out if he ordered a Petscan, that might eliminate all the other testing, unless things are going on that you don't know. Ask for copies of pathology reports,xray,CT etc. so you can read for yourself. Good luck and take care. Mare Quote Link to comment Share on other sites More sharing options...
Carleen Posted January 25, 2006 Share Posted January 25, 2006 Welcome, As the others ahead of me have said, that time frame is totally unacceptable. Not only does waiting cause undue stress and anxiety, but if your mother's cancer is one that responds well to treatment, thenyou want to start that treatment as soon as possible and get those tumors retreating. Kasey mentioned getting a second opinion, and I whole heartedly agree with that. My husband and I have gone to 5 doctors now, and each agrees that more minds working towards a cure is never a bad thing. In Kasey's case, after several opinions, she found a doctor willing to do surgery for her, and surgery always provides the best chance for a cure out of all the options. For us, the multiple opinions let us to discover that Keith was misdiagnosed at he beginning, so now that we have the correct pathology we can look into treatments more geared towards him. If we had accepted a small cell diagnosis, we would have looked at chemo only, as SCLC responds well to chemo, but my husband's does not. Find a good cancer center near your area. If you feel comfortable telling us your region, maybe someone here is in the area and can recommend a good oncologist that they have experience with. I wish you the best, and your mother and your family will be in my prayers. I know this is very hard, but come here and let us support you through this. Please also know that now you and your mom are in our prayers and in our hearts, and we would love if you'd keep us posted on how she is doing. God Bless, Carleen Quote Link to comment Share on other sites More sharing options...
bunny Posted January 25, 2006 Share Posted January 25, 2006 "the first days are the hardest days", as the song goes. we've been relatively lucky re: not having to wait more than a few days for scary test results, but when they come there's nothing that can make them un-scary. just keep posting and let us help you. xoxo bunny Quote Link to comment Share on other sites More sharing options...
hollyanne Posted January 25, 2006 Share Posted January 25, 2006 COMPLETELY UNACCEPTABLE. As everyone else had said -- the longest we ever waiting for results was 48-72 hours. Please, please do not accept their timing. You are right time is of the essence if for nothing else, peace of mind. I am sorry that you had to find us, but you will get tremendous support from this group. Diagnosis is devastating, but you will feel better once you have a plan of action in place. Hang in there. Holly Quote Link to comment Share on other sites More sharing options...
begonia Posted January 25, 2006 Author Share Posted January 25, 2006 Thanks for the suggestions. As soon as the scans are done I will call the pulmonologist and tell him the time frame is not acceptable to us and we want answers now and treatment options available for discussions. Holly I'm glad your mom was still here to see your child. What a terrible thing to go through while one experience is beautiful and happy another sad. You have to be a strong person to handle all this. Congratulations on your baby. I'll keep everyone posted. Thanks to you all. Quote Link to comment Share on other sites More sharing options...
Don M Posted January 25, 2006 Share Posted January 25, 2006 Hi again Begonia: If your mom had a confirmed diagnosis, I think she should be seeing an oncologist at this point. A month IS way too long to discuss the results of a scan. A pulmonologist is just fine for lung function and what not. The times I saw a pulmonologist were preludes to surgery. I suppose he could go ahead and order the tests, but take the results to an oncologist and get a treatment plan implemented. You could have a copy of the radiologists report sent to an oncologist by the radiology department and see the oncologist instead of the pulmonologist. Don M Quote Link to comment Share on other sites More sharing options...
bethluvswill13 Posted January 26, 2006 Share Posted January 26, 2006 Welcome! I hate to tell you, but with a cancer diagnosis the waiting never ends. It'll seem like you wait for everything. It always worried me. Im sorry about the diagnosis. Hugs, Beth Quote Link to comment Share on other sites More sharing options...
begonia Posted January 26, 2006 Author Share Posted January 26, 2006 Well, I took you guys' advice and called the oncologist today. They were wonderful. They too agreed that the wait and see approach was not acceptable. They scheduled an appt and bone scan for next Friday. If I waited for the pulmonologist to get around to scheduling her appt with onco. it would probably be another month. Anyway, thanks to you guys and your suggestions she is now scheduled and we feel much better. The oncologist even said they would cancel her now scheduled tests (bone scans) at the other hospital and schedule them right away at their hospital (Which is an hour closer to us anyway). So now we feel like we are taking some control over the situation. I'm trying to figure out how to say this nice. I can't believe all the wait, test, wait, appt., wait, test, we have gone through. It should not be this way. It is hard enough to get this kind of news and deal with 3-4 doctors, hospitals, etc and still not know everything is unacceptable. Again, thank you so much for helping me take charge. Your posts hopefully have given us more time with my mom, for that I am so grateful. She is having a lot of pain right now around her lymph glands in her neck. With her having COPD it makes it even harder. Quote Link to comment Share on other sites More sharing options...
Miami Janet Posted January 27, 2006 Share Posted January 27, 2006 Welcome Begonia, Sorry you find yourself in this position...nobody would ever choose to be a member of this group. Hoping for quick information for you and Mom Janet Quote Link to comment Share on other sites More sharing options...
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