Need some advice!!!

vchildbeloved
vchildbeloved Member Posts: 133
edited March 2014 in Colorectal Cancer #1
I got the results of my liver scan test that I had to retake. Well, the spot that was originally seen in Mar., was 1.5mm; checked by pet scan, there was no spot; checked again last week, the spot was there again only it was 1.6mm; had it rechecked Mon. - the results: I was told the spot never had changed from 1.5 to 1.6, that it was the same and that the doctor did not think that it was a metastisis from colon cancer. All my bloodwork came back good, as well as my CEA which has been a good indicator for me; it was 1.1 from less than 1.0 in Mar. If the spot is not a metastasis, what is it. I don't want to get down the road a bit and it become a huge problem for me. I asked them if there was another test that I could tske that could determine what it is and they said no; but that they would continue to monitor it. In the meantime, I'm still in pain on my right side, and there is still a spot on my liver! What would you do?

Valerie

Comments

  • Erinb
    Erinb Member Posts: 293
    #2
    Valerie,
    It is hard not to
    Valerie,
    It is hard not to REACT to this news. My husband had a similar situation, nothing showed up on a pet, but on the CT it did. I had a radiologist look at the scan and in her opinion it had grown in size. I also sent the scans to his surgeon and then had a second opinion at OSU. Both the surgeon and the doc at the University hospital wanted my husband to wait and see because the growth could have been an error in the cut due to the small size. But, his oncologist started him on Chemo the next day. He is still on Chemo 5 treatments later and we'll see what the next CT and PET look like.
    Do you have access to the records? Can you look at the transcription- I read my husband's and it said there was a concern for progression of metastatic disease. I try to get the reports from the scans to make sure I get all of the info before going into the office.
    In your case, the CEA should also be an indicator 1.1 sounds great to me!
    Best of Luck!
    Erin
  • vchildbeloved
    vchildbeloved Member Posts: 133
    #3
    Erinb said:

    Valerie,
    It is hard not to
    Valerie,
    It is hard not to REACT to this news. My husband had a similar situation, nothing showed up on a pet, but on the CT it did. I had a radiologist look at the scan and in her opinion it had grown in size. I also sent the scans to his surgeon and then had a second opinion at OSU. Both the surgeon and the doc at the University hospital wanted my husband to wait and see because the growth could have been an error in the cut due to the small size. But, his oncologist started him on Chemo the next day. He is still on Chemo 5 treatments later and we'll see what the next CT and PET look like.
    Do you have access to the records? Can you look at the transcription- I read my husband's and it said there was a concern for progression of metastatic disease. I try to get the reports from the scans to make sure I get all of the info before going into the office.
    In your case, the CEA should also be an indicator 1.1 sounds great to me!
    Best of Luck!
    Erin

    Thanks Erin. What size was
    Thanks Erin. What size was your husbands spot? I see my oncologist tomorrow to discuss things with him. I'm sure that he won't mind sharing the records with me.
    Best of luck to your husband!
    Valerie
  • SueRelays
    SueRelays Member Posts: 485
    #4
    Hi Valerie
    I had a similar
    Hi Valerie

    I had a similar situation. I was dx'd with anal cancer in 2008. At the time they saw a couple spots on my liver, but said they weren't worried as everyone has "spots" on their organs, but they would watch them.....same thing on my lung. Lung was more of a concern at the time. So after 3 scans it grew....minimally, but they biopsied it. At first, they weren't going to because it was so small they weren't even sure if they could. Well luckily they did, as it turned out to be a second primary cancer. Non smoker, no syptoms, so Thank God they watched it. Then just this year one of my scans came back with the liver spot changing some. I also had a pain in my side for about 9 months. They did all kinds of tests and couldn't figure out what it was. Thought it was scar tissue from the lung surgery. Biopsied liver, and anal cancer had mets to the liver....even though it was a stage 1 to begin with and they said anal cancer RARELY spreads....so not sure if I was misdiagnosed to begin with.....but the bottom line is as long as they stay on top of it, and even though the whole scan thing is a catch 22, we have to have them to find these cancers early. I had a scan every 3 months. It SUCKS not knowing what is going on....but sometimes when they are so small they can't get an accurate result either.
    I would just make sure you have another scan in 3 months.
    I'll be thinking good thoughts for you!!!!
  • coolvdub
    coolvdub Member Posts: 408 Member
    #5
    SueRelays said:

    Hi Valerie
    I had a similar
    Hi Valerie

    I had a similar situation. I was dx'd with anal cancer in 2008. At the time they saw a couple spots on my liver, but said they weren't worried as everyone has "spots" on their organs, but they would watch them.....same thing on my lung. Lung was more of a concern at the time. So after 3 scans it grew....minimally, but they biopsied it. At first, they weren't going to because it was so small they weren't even sure if they could. Well luckily they did, as it turned out to be a second primary cancer. Non smoker, no syptoms, so Thank God they watched it. Then just this year one of my scans came back with the liver spot changing some. I also had a pain in my side for about 9 months. They did all kinds of tests and couldn't figure out what it was. Thought it was scar tissue from the lung surgery. Biopsied liver, and anal cancer had mets to the liver....even though it was a stage 1 to begin with and they said anal cancer RARELY spreads....so not sure if I was misdiagnosed to begin with.....but the bottom line is as long as they stay on top of it, and even though the whole scan thing is a catch 22, we have to have them to find these cancers early. I had a scan every 3 months. It SUCKS not knowing what is going on....but sometimes when they are so small they can't get an accurate result either.
    I would just make sure you have another scan in 3 months.
    I'll be thinking good thoughts for you!!!!

    Hi Valerie,
    Unfortunately,
    Hi Valerie,

    Unfortunately, sometimes all we can do is the wait and see game. I had a lot of area light up on my PET scan, the interpretation was it's just scar tissue. Although the Doc who read the scan said he couldn't rule cancer out. My CEA levels are fine right now, so I'm doing the wait and see. When the surgeon did my Ileostomy last month, he did say there was a lot of scar tissue inside. Made forming a proper stoma impossible. Stay positive and i will be praying for good results for you in the future.

    Don
  • vchildbeloved
    vchildbeloved Member Posts: 133
    #6
    coolvdub said:

    Hi Valerie,
    Unfortunately,
    Hi Valerie,

    Unfortunately, sometimes all we can do is the wait and see game. I had a lot of area light up on my PET scan, the interpretation was it's just scar tissue. Although the Doc who read the scan said he couldn't rule cancer out. My CEA levels are fine right now, so I'm doing the wait and see. When the surgeon did my Ileostomy last month, he did say there was a lot of scar tissue inside. Made forming a proper stoma impossible. Stay positive and i will be praying for good results for you in the future.

    Don

    Thanks you guys. Saw my
    Thanks you guys. Saw my oncologist today and I feel confident that he is doing everything possible for me right now. He doesn't want me to have any more scans right now, from his own words and wound up lighting up like a Christmas tree. So I will have regular bloodwork in 3 months, and if anything has changed, then we will consider another scan. For now, I'm resting my mind!!!

    Valerie
  • Erinb
    Erinb Member Posts: 293
    #7
    vchildbeloved said:

    Thanks Erin. What size was
    Thanks Erin. What size was your husbands spot? I see my oncologist tomorrow to discuss things with him. I'm sure that he won't mind sharing the records with me.
    Best of luck to your husband!
    Valerie

    Hi Valerie
    My husband had a few of his tumors removed during a liver resection then he had three ablated. The one that increased in size was a ~7mm and increased to ~1.4cm. He has scar tissue from the ablation so the view and cut will change depending how he is positioned on the table. From what I understand, there is a 5mm possible measurement of error. It is hard to trust the doctors when they have very different opinions on how to interpret a scan or when to start treatment. If I were to interpret the scan, I would say OH NO IT DOUBLED! Obviously the doctors are well educated and hopefully want to help their patients the best way they know how. Enjoy the next three months and try not to worry about it. I hope your pain goes away!
    Erin

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