Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Hi guys, Heard from my onc. today re: ct scan follow up to PET results. Seems they could find nothing by the bladder, but they didn't think that would show as it had only slight uptake. , I asked about the bladder showing uptake and how could something be seen clearly beside it and my onc. said that the bladder was very distinct from this spot. Said it could be in the soft tissue or the bowel. It isn't the bowel, as I had a colonoscopy today (1 yr. follow up) and with nothing showing on ct scan, no real answers there. Here's the ever present bad news - the paraortic lymph nodes have grown dramatically since my ct on 5/2/02. Big enough to biopsy now, to be scheduled for Thurs. or Fri. this week. She said that if they are malignant, she was sending me on to a major cancer center. Fox Chase, Univ. of Penn. she mentioned, but I am located halfway between Phila. and Baltimore, so s Hopkins would be an option also. I have had a gut feeling to move on to somewhere myself. Any suggestions as to which place may be the best option for cc pts. would be appreciated. Take care, Kathy O. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Kathy, I am sorry the news wasn't more upbeat and definative. My mom has recurrent cc and I know how frustrating the vague answers and seemingly endless testing can be. We went to Dana Farber in Boston today, for a second opinion. We found it enlightening and also felt more secure and positive about the findings and " game plan" of her local Onc. When it comes to your life, it is my belief you can never be too informed. If your gut is telling you something...listen to it!! Never leave your life in anyone's hands. Be active in your recovery and be sure to not allow for regrets in the future for things you " could of / should of " done. Best wishes to you and yours , a oconnor@... wrote: Hi guys, Heard from my onc. today re: ct scan follow up to PET results. Seems they could find nothing by the bladder, but they didn't think that would show as it had only slight uptake. , I asked about the bladder showing uptake and how could something be seen clearly beside it and my onc. said that the bladder was very distinct from this spot. Said it could be in the soft tissue or the bowel. It isn't the bowel, as I had a colonoscopy today (1 yr. follow up) and with nothing showing on ct scan, no real answers there. Here's the ever present bad news - the paraortic lymph nodes have grown dramatically since my ct on 5/2/02. Big enough to biopsy now, to be scheduled for Thurs. or Fri. this week. She said that if they are malignant, she was sending me on to a major cancer center. Fox Chase, Univ. of Penn. she mentioned, but I am located halfway between Phila. and Baltimore, so s Hopkins would be an option also. I have had a gut feeling to move on to somewhere myself. Any suggestions as to which place may be the best option for cc pts. would be appreciated. Take care, Kathy O. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Hi Kathy, Oh gosh, sorry to hear this...but don't panic yet there still may be other explanations for enlarged nodes and ambiguous PETs.... I think the major cancer center is an excellent idea - maybe which one depends on what treatment/followup is " best " (e.g. which center has the " best " clinical trials - they are not all the same!). But the MOST IMPORTANT thing right now is to figure out EXACTLY what the problem is - IF there is a recurrence or not, and if it is, the extent of spread. You already had Camptosar as a stage III, didn't you? So there are some trials you would not be eligible for. Lemme think about this one for a bit....remember this is not an " either/or " sorta thing, you can ALWAYS get a " second opinion " at BOTH! And let's not assume the worst - it is VERY possible everything is fine! I will be hoping..... Best Wishes, > Hi guys, > Heard from my onc. today re: ct scan follow up to PET results. Seems they could find nothing by the bladder, but they didn't think that would show as it had only slight uptake. , I asked about the bladder showing uptake and how could something be seen clearly beside it and my onc. said that the bladder was very distinct from this spot. Said it could be in the soft tissue or the bowel. It isn't the bowel, as I had a colonoscopy today (1 yr. follow up) and with nothing showing on ct scan, no real answers there. > Here's the ever present bad news - the paraortic lymph nodes have grown dramatically since my ct on 5/2/02. Big enough to biopsy now, to be scheduled for Thurs. or Fri. this week. She said that if they are malignant, she was sending me on to a major cancer center. Fox Chase, Univ. of Penn. she mentioned, but I am located halfway between Phila. and Baltimore, so s Hopkins would be an option also. I have had a gut feeling to move on to somewhere myself. > Any suggestions as to which place may be the best option for cc pts. would be appreciated. > Take care, > Kathy O. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Well ........we'll be praying right along with you! There is strength in numbers they say. Sending an e-hug your way!! Donna S. > I picked up my ct films/report today, and it is unfortunately not > good news. " There are axillary lymph nodes up to 8x5 mm in size. > There is no hilar or mediastinal lymphadenopathy. Innumerable > pulmonary nodules representing diffuse metastatic disease have > increased in size and number considerably. " ......liver, gallbladder, > pancreas, etc. still good though. I'm not sure where the nodes are > physically located, still have no symptoms, pain, etc. Like Mark, > , and probably many of us I feel well, function fine, look > normal, and no one would ever know that I have this disease and to > this extent. Unreal. Going to Hopkins tomorrow, starting cycle 3, > they had told me not to expect anything at the first scan, but I was > still hoping. Guess I'll give this six more weeks and rescan, > praying it will start to do something. > Take Care, > Kathy O. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2003 Report Share Posted May 13, 2003 Kathy, I'm sorry you didn't get the news you were hoping to hear. I will be thinking of you. Best, Quote Link to comment Share on other sites More sharing options...
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