creekgirlsc Posted December 17, 2008 Share Posted December 17, 2008 Well I managed to go from stage 111A to stage IV at my onc appt. on 12/15 so things are different now & I need to get my mind wrapped around it. I had a CT of pelvis on 12/10 (just as a precautionary measure my onc tells me) & the bronc on 12/12. Pul doc confirms cancer in lymph nodes. Onc doc tells me results of CT show bone mets so having lymph nodes on left side & bone mets changes things to stage IV. Then tells me that maybe Avastin might not be right for me. But first he wants a MRI of my brain to see if there are any mets there. That is scheduled for 12/23. I have no idea what the plan of action will be if there are mets. I am still going to have a power port put in. I like my onc but didn't like what he said next & I don't think he liked saying it. This is the first time that he has ever put the cancer in a time frame so I was surprised. "Since all this has occured I have to tell you that your prognosis is different. Actually we don't think your cancer ever went away. It was just too small to see. We also see tumors in your left lung but they are very small. I will give you from 3 to 6 months at the least and 1 to 2 years at the most. I know that this comes as a shock to you but I promise that we are going to do our very best for you". And then he gave me a hug & a little back rub. Now scheduled for an office visit 12/31 with him. Sure hope that he has some good news. I know that many people on this message board have been around for a long time & that gives me hope & maybe I'll be one of them. I have a lot of things I want to do.......gardening, quilting, reading, travel, etc. Creekgirl Quote Link to comment Share on other sites More sharing options...
Muriel Posted December 17, 2008 Share Posted December 17, 2008 (((((Creekgirl))))) I'm sorry about your bad news. Remember, tho., statistics describe an average and you aren't average. Muriel Quote Link to comment Share on other sites More sharing options...
SandraL Posted December 17, 2008 Share Posted December 17, 2008 Hi creekgirl. I absolutely know the feeling of devastation that you are going through. I have experienced it myself a few times. Last Feb I went from NED to Stage 4. And it does really take awhile to get your mind wrapped around that and back in fighting mode. You just have to go through the down part, and then the rest does come, including much hope. Shame on that doctor for telling you that. I feel that nobody should be told their prognosis unless they specifically ask to be told. Some people need and want to know and others do not. We are all different. And really, you don't need to be explicity told by a doc either. We all know in our hearts that this isn't good. And somehow hearing it come from a doctor's mouth makes it even worse and makes it take longer for us to get back in fighting spirits. And a fighting spirit is what we need to increase our chances of being long term survivors. Giving up just isn't an option. There is too much to live for. I hope your tests get completed quickly and that they get you on a more suitable treatment plan asap. And most of all I pray for your strength in getting through this latest blow. May you know that many others have done so and are thinking of you. Please take care Sandra Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 17, 2008 Share Posted December 17, 2008 This is the first time that he has ever put the cancer in a time frame so I was surprised. I'm surprised too. Maybe your onc thought he heard a question and responded accordingly. But basically I agree with Sandra. Wishing you the best. Ned Quote Link to comment Share on other sites More sharing options...
Wendy Posted December 18, 2008 Share Posted December 18, 2008 Creekgirl, I truly know how you feel right now. I know my head was spinning non-stop when my cancer came back and spread. There are just no words to explain the experience. Go ahead and freak out, scream, holler, cry, scream, holler, and then some more crying. I really think going through all the emotions is good therapy. Try not to focus on the docs time frame. I am a stage iv survivor of 3 years and almost a 5 year survivor of lc. I just had my pet scan and I am still doing good on Avastin and Tarceva. My doc doesn't know how long I will continue to respond to treatment, but in the meantime I am taking advantage of every day! You can live with stage iv disease. I will keep you in my prayers. Let us know what your new treatment plan will be. Wendy Quote Link to comment Share on other sites More sharing options...
creekgirlsc Posted December 19, 2008 Author Share Posted December 19, 2008 Thanks for the replies & well wishes. I've got my mind wrapped around it fairly well now. I think the onc doc was so candid was that when we first started off together back in Aug. 2007 that he told me some patients don't want to have any prognosis told to them & others do. And I probably told him that I did want to be kept informed of my situation. So, it is my own darn fault for being so nosy....lol. Power port scheduled for Monday, brain MRI for Tuesday. Wednesday I will decorate the tree & on Thursday will Thank God for letting me have a another Christmas to celebrate the birth of his son. Best wishes to all....& again thanks, Connie Quote Link to comment Share on other sites More sharing options...
grimie Posted December 20, 2008 Share Posted December 20, 2008 creekgirlsc, Just hang in there!!!!.It is a roller coaster ride that is totally unbelievable. Ruth Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 20, 2008 Share Posted December 20, 2008 Connie, you got the news all of us who have ever met NED dread (not you Ned). That micrometastic cancer can be hiding anywhere in anyone. But those of us who have already had the diagnosis just feel initially it can't be happening again. Unfortunately, it can. Your bounce back is awesome. Hang in there with that great attitude of thankfulness. And keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 21, 2008 Share Posted December 21, 2008 (((Creekgirl))), First of all, I'm sorry about these recent changes , but I am not a believer in doctors who think they can tell you the one thing that only God knows and that is how long you have to live. They can only go by averages and statistics and so many of those figures are based on cases treated before a lot of the newer treatments became available. I love your spirit and your plan to take it one step at a time and go from there. Remember, we are here for you too. Please keep us posted on the outcome of all your tests and let us support you in whatever treatment plan you have. God Bless, Sue Quote Link to comment Share on other sites More sharing options...
creekgirlsc Posted December 25, 2008 Author Share Posted December 25, 2008 Merry Christmas to all. We are having beautiful weather today so will take a little ride in the golf cart later. I wanted to let you know that I had the 'power port' put in on Monday 12/22 and that procedure went well. It was done by the same surgeon who did my lobectomy & she was very reassuring about my prognosis when I told her what the onc doc told me....that I was strong & could handle just about anything. She did tell me that the 'signet ring feature' of the cancer cells in my lymph nodes are rare & also an agressive type. I had the MRI of the brain done Tuesday 12/23 in mid afternoon & that night around 6pm one of the doctors in the practice called to tell me that they found 2 mets. One is 1 cm & the other is smaller. She said my onc would probably call me with more info. But she did want me to know that it would be either radiation or gamma knife and that they were going to hop on this a.s.a.p. I hadn't expected to find out about this until I saw him on 12/31 but at least I don't need to spend Christmas Day fretting about the results. I'll just eat my share of the turkey & maybe even a little bit more than my share of the pumpkin pie. Blessings on all......& thanks for being here when I need you. Connie Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 25, 2008 Share Posted December 25, 2008 I hadn't expected to find out about this until I saw him on 12/31 but at least I don't need to spend Christmas Day fretting about the results. That's good — I would have wanted to know too. Knowledge is strength. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 26, 2008 Share Posted December 26, 2008 Connie, glad they didn't keep you hanging. Waiting is the worst. And thrilled that, if you have to have mets, they are so small. Hope you enjoyed that Christmas dinner and ate plenty of pumpkin pie. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted December 28, 2008 Share Posted December 28, 2008 Hi Creekgirl. I am sorry the news wasn't better, but as Ned says, knowledge is power and it can be settling to know what is going on and that there is a plan to deal with it. I hoped you enjoyed your xmas dinner. Sandra Quote Link to comment Share on other sites More sharing options...
fillise Posted December 29, 2008 Share Posted December 29, 2008 Creekgirl--Just wanted you to know that I an thinking about you. Sounds like you have some aggressive Drs and a good fighting plan! Susan Quote Link to comment Share on other sites More sharing options...
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