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Stage IV melanoma pet scans prognosis CA-125

Forums Cutaneous Melanoma Community Stage IV melanoma pet scans prognosis CA-125

  • Post
    Jlynn2303
    Participant
    Hi,
    Last October, my 63-year-old step-mother was taken to the ER for a GI problem resulting from old bariatric surgery. They did a CT scan of her abdomen and picked up spots on her lower lungs. The radiologist compared the CT scan to one taken three years previously when she had gone to the same ER for the same GI stuff and found that the masses had grown. It turned out that her doctor had forgotten to inform her. She had surgery to biopsy and remove the larger lump, (they removed a lung lobe) last November (’10) and it came back as melanoma, stage IV. A Pet scan in December came back clear. Apparently, she also has cysts on her ovaries and her CA-125 came back extremely high (over 1000). She is scheduled to have another PET in April, although the insurance company still is not certain it wants to pay for the first one. They have denied Interleukin treatment. Her father, brother and grandmother all died of various cancers. They did a skin inspection and found nothing. She seems to be feeling the same as always, no worse, no healthier.

    I am having trouble getting a straight answer out of people and have some questions.

    1. They actually discovered stage IV melanoma in her lungs over three years ago. When they talk about prognosis, how do they figure the time?
    2. How accurate are PET scans? Everyone seems to think they are infallible, but I’ve seen stats of 81% accuracy. What does a clear pet scan + a positive CA-125 mean?
    3. How does having had melanoma impact all of the other, unrelated surgeries and stuff that she will have to have to tx her many other ailments?

    Thanks,
    Jennifer

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  • Replies
      lhaley
      Participant

      Jennifer,

      Welcome to the board but I'm sorry that you've had to join us. That is so upsetting that the Dr. knew about the tumors in the lungs and did not tell your step-mom!!!  I do hope someone is dealing with that issue although it's not the most important one now.

      If the melanoma was left untreated 3 years ago in the lungs it's a sign that it's not extremly aggressive, however, that can change with time.  Many of us here tend to not look at statistics because we are individuals and they don't always fit us. Your step-mom is an example of that!  Many stage IV patients would have already passed away 2 years previous to this had they not done anything.

      Pet scans are known for their false positives and their false negatives.  But, it's the best we have!  Many with active disease only have ct's that focus on the main organs plus a brain mri.  A PET/CT is known to only have nodules that are at least 1cm show up due to the size factor. That's why on this site you will see people say they are NED – no evidence of disease.  For those that are NED a PET is a great idea because melanoma does not have boundaries and it can show up on your extremities even though it started on another part of the body.  A CT would not be scanning the leg or arms. Also sub-q's show up on the PET.

      As far as her insurance goes I would have the hospital involved, the Doctor and also call the insurance commision.  IL2 is an FDA approved drug for stage IV!!  Right now it's the one of 2 so she should be able to get it! Some have had issues with the cap on their insurance because it's frightfully expensive but I thought the new health care bill was dealing with that – maybe it hasn't started yet.   I did hear at a conference last year that at least in NC, BCBS was only allowing PET/CT's if you had active disease within the last year. (I haven't been NED for a year to have that issue).

      Is your step-mom going to a melanoma specialist?  When I have other health issues my mel. Dr. usually guides me on who to see. Since I go to a major cancer center he has even left his office and come back with another Dr. if they have someone that can deal with something else that is going on.

      Linda

      Stage IV since 06

      Stable

      Dealing with mel since 1979

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      lhaley
      Participant

      Jennifer,

      Welcome to the board but I'm sorry that you've had to join us. That is so upsetting that the Dr. knew about the tumors in the lungs and did not tell your step-mom!!!  I do hope someone is dealing with that issue although it's not the most important one now.

      If the melanoma was left untreated 3 years ago in the lungs it's a sign that it's not extremly aggressive, however, that can change with time.  Many of us here tend to not look at statistics because we are individuals and they don't always fit us. Your step-mom is an example of that!  Many stage IV patients would have already passed away 2 years previous to this had they not done anything.

      Pet scans are known for their false positives and their false negatives.  But, it's the best we have!  Many with active disease only have ct's that focus on the main organs plus a brain mri.  A PET/CT is known to only have nodules that are at least 1cm show up due to the size factor. That's why on this site you will see people say they are NED – no evidence of disease.  For those that are NED a PET is a great idea because melanoma does not have boundaries and it can show up on your extremities even though it started on another part of the body.  A CT would not be scanning the leg or arms. Also sub-q's show up on the PET.

      As far as her insurance goes I would have the hospital involved, the Doctor and also call the insurance commision.  IL2 is an FDA approved drug for stage IV!!  Right now it's the one of 2 so she should be able to get it! Some have had issues with the cap on their insurance because it's frightfully expensive but I thought the new health care bill was dealing with that – maybe it hasn't started yet.   I did hear at a conference last year that at least in NC, BCBS was only allowing PET/CT's if you had active disease within the last year. (I haven't been NED for a year to have that issue).

      Is your step-mom going to a melanoma specialist?  When I have other health issues my mel. Dr. usually guides me on who to see. Since I go to a major cancer center he has even left his office and come back with another Dr. if they have someone that can deal with something else that is going on.

      Linda

      Stage IV since 06

      Stable

      Dealing with mel since 1979

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