lkraham Posted July 23, 2010 Share Posted July 23, 2010 Hello everyone. I am new here. My mother, an otherwise perfectly healthy 65 year old, was just diagnosed with Lung Cancer a week and a half ago. This has come as a complete shock to all of us, and I am just devastated. I'm trying to deal with this the best I can and do as much research as possible so that I can help her understand all her treatment options and make the best possible decision. I've been reading through so many of your posts, and just your storied and information in your signatures has been such an inspiration. I would like my mother to join this group as I can tell that you all offer each other incredible support and advice and it seems invaluable. All of your stories, good and bad, have brought me to tears and I wish the best to everyone of you. Since we're so new to the process, and didn't even know all of the questions to ask, I'm still a bit uncertain of all of the details. My mother has a large tumor in her right lung, near the esophagus, and a small lesion in the left. She had a biopsy of the small one yesterday and will have one done of the large in the next week or so. At this point, they are giving her the benefit of the doubt and assuming, based on appearance, that they both primaries, which would put her at a stage IIIa. We have been told that the course of action will be radiation 5x/week for a total of 31-33 treatments and chemo 1x/week for 6 weeks and that surgery is not an option. I'm not entirely clear why it's not an option. One doctor said something about the mediastinum being invaded thus ruling out the surgery and the other said surgery would require removal of the whole lung, so it's not an option. But, I see in some of your posts that lung removal can be effective, so I'm wondering if we should be pushing for this. Also, how many treatments of radiation will eliminate surgery as an option down the road? Someone here mentioned that they had 3 opinions saying non-surgical and then finally a 4th opinion at NIH agreed to the surgery. I did not know that patients can see doctors at NIH. Can anyone recommend a doctor? We are in NJ, but of course, we're willing to travel. Sorry for so many questions, but I'm feeling a bit desperate for info right now. Thanks in advance for any help you can offer. Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 23, 2010 Share Posted July 23, 2010 Right now everything is in turmoil for you. When all the tests are done and the treatments start the panic kind of goes away. we can and do offer a lot of support and stability here and one of the perks we have is that we have our very own Lung cancer Oncologist with his own forum. Dr. West runs Cancer grace a great place for the medical questions we throw at him from all sides and sizes and does a great job of getting our questions medically answered as well. this is a link to his site and registration is free, Most of us especially patients, so you probably wont see me over there but I am Here a lot of the time for support and help when I can be of assistance! Here is the Link, and click to get to his site! http://cancergrace.org/ We can get you answers to a lot of questions also but if we cant, Dr West can! But we can give you and Mom the fighting inspiration and the patient and caregiver perspective here! Welcome to the place no one wants to be but is glad they are. Stick around and post up and we look forward to getting to know all about you and mom for a very long time to come and thats a good thing right now!! Quote Link to comment Share on other sites More sharing options...
ts Posted July 23, 2010 Share Posted July 23, 2010 So sorry you needed to find this site, but welcome. The info you want to know is the size of the nodules or tumors. For example, I had one almost 3 cm in my right lung, and one 5 mm as well. One the right side, I had one that was 6 mm. After all the treatment I have had, the left one is still there and not growing or shrinking. The docs and I believe that one is NOT cancer. I did have surgery; unfortunately, during surgery we found out my Petscan was a false negative and I did have lymph node involvement, so I went on to have chemo and radiation after. Later, I had recurrence in my liver, so I am continuing on treatment. My reason for telling you all of this is that if the secondary lesion is small and not active, it may not be cancer. So please wait for the biopsy results before you get ahead of yourselves. You want to know: size of nodules type - adenocarcinoma? NSCLC, assumed by staging. Staging - why are they saying IIIa? Has the tumor invaded the esophagus? If it has, that might explain why surgery is not an option. It's really hard to take a step back when all this activity is happening, but in hindsight, I do wish I would have gotten a second opinion from a cancer research institute or another lung cancer specialist prior to any treatment. Once you start down a road, it can close off other options. I'm not familiar with the facilities in your area, though of course we hear of Memorial Sloan-Kettering often. Take care. Quote Link to comment Share on other sites More sharing options...
Joppette Posted July 23, 2010 Share Posted July 23, 2010 Hello, so glad you decided to post to get some answers. Do visit the cancergrace.org web site. Dr. West is amazing and will help you. ts gave you some good questions to ask. And I agree, that it is best to get a second opinion before going one course or another. Like it was said, some times you take one action and it closes off others down the road. When I was told that I had to have my left upper lobe removed, I was horrified. It seemed so extreme to me. So we flew out to Mayo Clinic for another opinion. I have to say I was so impressed with the Mayo Clinic. When I made my plane reservations, I told them where I was going and why, and they gave us a 50% discount off our airfare because I had cancer. My hotel was also 50% off. And the doctors only charged me a minimal free for their second opinion. It was well worth it. They confirmed what the doctors at home said, but it made me feel better to get their confirmation. It will calm down once you get all the answers you need. I agree with ts that if it has invaded the esophogus, surgery may not be an option. They won't operate unless they are convinced they can get all of it. Taking out a piece of the esophogus is probably not an option. Take care, we look forward to hearing back as you get more answers. We'll do all we can to help, support, and motivate positively! Judy in MI Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 23, 2010 Share Posted July 23, 2010 oh and don't listen or pay any attention to the "You have so much time left!" spiel This place would be very lonely if they were all true!!! and I am not kidding either! Most people here have beaten that speech several times over by now!!!! Quote Link to comment Share on other sites More sharing options...
Donna G Posted July 24, 2010 Share Posted July 24, 2010 Hello to you and welcome. I had chemo and daily radiation so that my tumor would shrink and become operable , so no that does not make you inoperable. You can read my story by clicking below. Hope your Mom's tumor shrinks with treatment too. Keep us posted on how things are going Donna G Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted July 25, 2010 Share Posted July 25, 2010 Welcome, but sorry you need to be here. This early part where you don't have answers for so many questions is one of the scariest times. We all feel better when we know more and have a plan in place. Keep us updated. Quote Link to comment Share on other sites More sharing options...
lkraham Posted July 26, 2010 Author Share Posted July 26, 2010 Thanks everyone for the warm welcome and all of your advice. It really does help so much and I'm glad to meet you all, even under these terrible circumstances. Quote Link to comment Share on other sites More sharing options...
beatlemike Posted July 30, 2010 Share Posted July 30, 2010 Sorry about your mother's diagnosis. Prayer said for a successful treatment with good results. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 30, 2010 Share Posted July 30, 2010 Welcome and sorry you had to find us. Sending many healing thoughts your mother's way. If you can't get your mother to join on the site, one caretaker reported she would print the relevant posts and read them to her mother. Wishing you strength. Keep us posted. Judy in KW Quote Link to comment Share on other sites More sharing options...
Van55 Posted July 30, 2010 Share Posted July 30, 2010 Welcome. As with others I am sorry you needed to find this place. From the point of view of the patient, I can't tell you how very important it is for you to supporty your mom in a positive, optimistic way. As the saying here goes, "cancer" is a word, not a sentence. When I told my 20-something children of my diagnosis, they wept. That was not what I needed, I had enough sorrow for myself! When they walked with me through the processes I have experienced and learned the facts etc. they came to be my optimistic support group. Keep the faith! Quote Link to comment Share on other sites More sharing options...
fillise Posted July 30, 2010 Share Posted July 30, 2010 Don't be afraid to ask questions. Ask your mom's doctors, ask us, ask the docs at Grace. . . .don't think any question is stupid or insignificant. We are here for you. Susan Quote Link to comment Share on other sites More sharing options...
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