Alli Posted January 15, 2007 Share Posted January 15, 2007 My name is Alli and I have been reading the posts on this fantastic website for a few weeks now. Last week my mother was officially diagnosed with NSCLC - Adenocarcinoma as a result of a biopsy. Initially, a tumor was identified on an x-ray in her right middle lobe (back in October 2006), but we found out last week that the first tumor is actually located on the periphery of her lung - right lower lobe, and it has spread to the middle lobe. Several lymph nodes are also involved. My mother received a phone call last week from the hospital and was told that surgery is not an option (as it was when it appeared that the solitary mass was the problem). We are awaiting a meeting with the oncologist this week. I have a question in regards to staging of LC: I have read that when a tumor has spread to a different lobe, even of the same lung, that this is Stage 4 disease (this is also described in the staging link provided recently on this site). Alternately I have read that if it is confined to one lung that it is Stage 2. Could anyone please provide advice on this matter? Finally, can anyone give me some advice on the best way to support my mother during this very difficult time? Thanks and good wishes Alli Quote Link to comment Share on other sites More sharing options...
Connie22 Posted January 15, 2007 Share Posted January 15, 2007 Welcome to this wonderful LC support site-although I am sorry that you have a need to be here. One of the most important things that I learned was just to be there for my mother. I am so thankful that I could be. Sometimes it takes a lot of inner strength and a whole lot of soul searching to find the strength, but for me, looking back now, I am so thankful that I was there. It can be such a rollercoaster at times but just know that we are here for you! Hugs and Prayers Connie Quote Link to comment Share on other sites More sharing options...
mary colleen Posted January 15, 2007 Share Posted January 15, 2007 Alli, welcome. Usually, people are diagnosed in Stage 4 have distant spread, such as spread to the liver, adrenal glands, brain or bones. However, you are right - according to the staging literature, spread into a second lobe is also listed as Stage 4. I wasn't aware of that until you pointed it out. Remember that being inoperable does not mean that it is untreatable. There are a lot of people here whose tumors were inoperable, but who have maintained good quality of life for extended periods through chemo, radiation, and targeted therapies like Tarceva. If you spend time reading the many posts stored on this site, you will find many such cases. Sometimes, tumors are intitially inoperable at diagnosis, but become operable later after shrinkage. resulting from other therapies. In addition, if you seek more than one opinion - and I certainly would, if the first opinion was that I was inoperable - you will sometimes get a different view on whether a cancer is operable. There are a lot of other important factors that play into your Mom's diagnosis and treatment - for example, whether the involved lymph nodes are within the lung, in the other lung, or in the mediastinum between the lungs. You may want to go to www.onctalk.com and register. Dr. West has a forum there for folks to e-mail questions, and is great about answering them in plain language. Again, welcome and let us know how we can help you as you undertake this journey. Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 15, 2007 Share Posted January 15, 2007 Adenocarinoma is the most common and most researched type of NSCLC. Welcome. Click on the profile button at top when you find out med treatment plan. You can enter it and will not need to re enter every time you post. Let usu know when you get details. If you do not like what you hear, Consider a second opinion. Quote Link to comment Share on other sites More sharing options...
ernrol Posted January 15, 2007 Share Posted January 15, 2007 Alli, Welcome to the site. I was told that my cancer was inoperable and that radiation was not an option. After 6 cycles of chemo they thought they might be able to use radiation, but when they checked there was nothing to radiate, just scar tissue. They never mentioned operating on the scar tissue. So I have had no operation or radiation. I am cancer free. It can be treated with chemo with good results. As far as staging, one doctor said IIIb and the other said IV, either way it did not change anything. To support your mom, just be there and be part of her team to beat this. If your mom would do some of her own posting here it could be a big help to her. I found that taking control of my treatment was a big help to me mentally there is so much to learn and the doctors do not have all the answers. Your mom’s attitude is most important and she can get some support here that will help keep her positive. I would get a second opinion from one of the leading cancer centers like M.D. Anderson or Sloan Kettering. We will give you and your mom support on this site. Please post some more info in regard to test etc. Use the profile. I have some question about the tumor being found in October and they are still staging it in the middle of January. Feel free to PM or e-mail me. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
hollyanne Posted January 15, 2007 Share Posted January 15, 2007 Alli - Welcome to this wonderful support group. We are here for you...to support you... to answer questions, whatever you need. How do you support your mom? Just love her. Once treatment starts you will find tangible things she needs help with...basically just be there with ears open and arms ready to love her. Many of us daughters know exactly what you are going through...and we are here. Holly Quote Link to comment Share on other sites More sharing options...
marym Posted January 15, 2007 Share Posted January 15, 2007 Wewlcome to the site, Alie, I'm so sorry that you had need to find us. I think the best support I get from my family is just being there. Early on, they let me be sad and cry when I needed to and now they just assist me as needed. They often come to appointments with me and when I'm tired or not feeling great, they'll take care of shopping, dinner or whatever. But mostly they are with me and we try to enjoy every day. You also need to go through that grieving and the anger and get to the place where we're ready to fight. I was originally diagnosed with 6 to 12 month. Its been 21 months and I still go about my normal business, work part time and have not been hospitalized or even in bed for a day of tnhe time. So the disease can be treated - if not cured (yet). By the wasy, those who have been operated on can tell you this surgery is major and has a long recovery time - I'm not sure I would have the surgery if it were possible for me. Best of luck to you and your Mom. Let us know how things work out. Mary Quote Link to comment Share on other sites More sharing options...
Liz13 Posted January 15, 2007 Share Posted January 15, 2007 Hi Allie, Sounds a bit like me. They thought mine was confined to the left upper lobe and went in to take it out. When they got there they saw it had spread to the lower lobe and attached itself to the chest wall. That made it stage 4 and inoperable. They started me on chemo and radiation in the hopes of shrinking it enough to do surgury. I go in Friday for a CAT scan to see if it worked. Fingers are crossed. Chemo doctor said stage 4, radiation doctor said stage 3b. Either way, it's there and needs to be treated. Email with any questions. Hugs, Liz Quote Link to comment Share on other sites More sharing options...
missyk Posted January 16, 2007 Share Posted January 16, 2007 Hi Alli and welcome. Glad you found this site...sorry you had to. I know (as does everyone else on this board, I'm sure) that hearing stage 4 seems like insurmountable odds...but there are many people here who are beating those odds every single day. Hope is the most important thing. A positive attitude. It's not always easy...but it's do-able with lots of love and support for the person doing battle. As far as support goes. My experience is just to be how you've always been with your mom. If you've always joked around...try to find times where you still can laugh together. If you normally have had in-depth conversations with her, keep those going. Just remind her that you love her, that you're there to help her any way you can, and that you're behind her 100%! Mom tells me that (other than the grandbabies) that's what helps her the most. Quote Link to comment Share on other sites More sharing options...
patscan Posted January 16, 2007 Share Posted January 16, 2007 Welcome to the site...sorry you had to find us. My mom was Staged at IV because she had cancer cells in the fluid surrounding the lung (malignant pleural effusion)..but she also has 2 spots on the same lung. Surgery was not an option for her, but she is doing remarkably well with Chemo. Stay positive--it is a roller coaster--grab one and hold tight as you take this ride with your Mom. Come here for advice and support and take care of yourself. Candy Quote Link to comment Share on other sites More sharing options...
trish2418 Posted January 16, 2007 Share Posted January 16, 2007 Welcome, Alli. Trish Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 16, 2007 Share Posted January 16, 2007 Hello Alli and welcome So sorry you had reason to find a site such as this, but glad you have joined us. You have gotten some wonderful advice here already and I cannot add to that other than to say please let us know how we can help you along this journey and know that there will always be someone here for you. My best to you Christine Quote Link to comment Share on other sites More sharing options...
Don M Posted January 16, 2007 Share Posted January 16, 2007 Welcome Alli. Don M Quote Link to comment Share on other sites More sharing options...
Alli Posted January 17, 2007 Author Share Posted January 17, 2007 Thank you all so much for taking the time to respond to my post. Finally - we have an appointment with the oncologist next Monday, so we can find out more, and then treatment... It's been such a long wait. As I mentioned earlier, mum's initial x-ray was back in Oct. Two unsuccessful bronchoscopies and a needle biopsy were done prior to the last successful(?) biopsy very recently. The bad news resulting from the biopsy was given the day before the first anniversary of my dad's death Mum is 65, and has never smoked, which initially made it difficult for us to believe that she could have lung cancer. We've since learnt a thing or two. In my life, I have been feeling quite sensitive to others' reactions when I tell them about mum, and at times find myself feeling angry about what people say. It's like a rollercoaster ride at the moment. I can't imagine what it must be like for my mum. She is feeling scared at the moment, because she doesn't know what she is to deal with. And of course she misses my dad. Thank you so much again for your support. I want to show mum this website soon. Alli Quote Link to comment Share on other sites More sharing options...
Nick C Posted January 17, 2007 Share Posted January 17, 2007 Alli, I will echo what others have said here. First welcome, and second, inoperable does not mean untreatable. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 17, 2007 Share Posted January 17, 2007 Alli So glad that you have the appt. Please let us know how things go. Looking forward to your Mum joining us! My best to you, Christine Quote Link to comment Share on other sites More sharing options...
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