Liver mets mistaken as hemangioma or harmatoma on MRI

Posted by margaret12 @margaret12, Sep 12, 2022

Did anyone have liver mets from NET that were mistaken for hemangioma or harmatoma on MRI?
How small were the liver spots found with PETCT Gallium68 and Copper64?
Did anyone have both Gallium68 and Copper64 in short period of time , did one show more findings then other?
Anyone with bone, uterus findings on PETCT Gallium68 or Copper64?
Thank you,

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@avawein

Sorry. Had to go back and read my medical records. The first one was found by ultrasound in 2016 and was below a cm. An ER visit for a bowel blockage (was actually the NET in the terminal ileum) and CT scan in Jan of 2019 saw the second “hemangioma”. I had a follow up gallium CT PET scan in July of 2021. Everything looked fine but my serotonin was rapidly rising so my doctor ordered a copper scan in August of 2021. That’s when the tumors lit up. Oddly, the tumors got up to 2.4 cm then shrunk down to 1.9cm before the surgery. Going to say the copper scan was pretty uncomfortable for a few minutes. I had the strongest flushing episode ever when they were injecting me. With
the gallium scan I had a feeling of “I don’t feel good” but it was minor. I’m grateful that I was able to get the copper scan as
it seemed much more sensitive to my tumors and would do it again.

I wish the very best for
you and hope all turns out well.

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I appreciate You taking the time to look though Your records, this helps with my decision.
I greatly appreciate You and wish You best. If You would like to stay in touch, please let me know.

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@margaret12

I appreciate You taking the time to look though Your records, this helps with my decision.
I greatly appreciate You and wish You best. If You would like to stay in touch, please let me know.

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So glad to have found you on this forum. Know that I am rooting for you and would love to keep in touch. Let us know how everything turns out.

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@avawein

So glad to have found you on this forum. Know that I am rooting for you and would love to keep in touch. Let us know how everything turns out.

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Thank You. I will.
All best,

Margaret

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@margaret12

Have worsening symptoms for close to 20 years but much progression since Sep 21 with multiple liver hemangiomas and harmatomas, not convinced as they increased in size and number.

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I also just had a copper scan August 2022 they found a hemangioma in my 5th vertebrae lit up had SUV as well as a 5th rib fracture with high SUV so I am very concerned who actually interperts the scan results because it sure doesn’t seem like radiologists or specialist that are familiar with lung NETS or any NETS. I just had a right upper lobe lobectomy May 2022 and had no other growths, hemangiomas, no fractures, no nothing prior to surgery and nothing until 3 months later at the end of July 2022 when I was in so much tboracic pain and my heart beating funny while resting, worsening cough, crackling and ripping in my lung and burning throbbing rib pain.

What is mind boggling is the PET copper scan found a new nodule starting to grow in my lower right lobe, again just three months after my right upper lobe lobectomy for a 3.5cm “typical” carcinoid that had metastasis to the angiolymphvascular region. The mind boggling part about all this, the oncologist at Moffitt Cancer Center said there is nothing to be worried about! I am deeply concerned,
I am in physical pain and just had a CT and it shows my 7th rib had a fracture and is healing. In addition is showed an infection in my 6th rib which is the rib the surgeon took 2cm from and sent to the lab during the lobectomy.

I am concerned that I cannot find a lung NET doctor to connect the dots, that something is not right. I shouldn’t be going backwards 3 months after surgery when the first 3 months after surgery there was nothing, no pain beyond the normal surgery pain, I could breathe, I wasn’t coughing, there were no growths, no fractures, no fibrosis showing up on an X-ray, no middle lobe collapse. May, June and most of July everything was healing and then I was in pain, shortness of breath, etc. But yet the doctors say it is all post surgery effects. The hardest part, the pain has not gone away and it is not healing and they say there is nothing they can do but give me an inhaler and pain medicine, which the pulmonary function tests showed that the inhaler does nothing! Can I have just one oncologist, pulmonary lung NET specialist take an honest look at the scans and not rely on the technician’s or radiologist interpretation, or maybe a radiologist who is versed with lung NETS?

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@melmangen

I also just had a copper scan August 2022 they found a hemangioma in my 5th vertebrae lit up had SUV as well as a 5th rib fracture with high SUV so I am very concerned who actually interperts the scan results because it sure doesn’t seem like radiologists or specialist that are familiar with lung NETS or any NETS. I just had a right upper lobe lobectomy May 2022 and had no other growths, hemangiomas, no fractures, no nothing prior to surgery and nothing until 3 months later at the end of July 2022 when I was in so much tboracic pain and my heart beating funny while resting, worsening cough, crackling and ripping in my lung and burning throbbing rib pain.

What is mind boggling is the PET copper scan found a new nodule starting to grow in my lower right lobe, again just three months after my right upper lobe lobectomy for a 3.5cm “typical” carcinoid that had metastasis to the angiolymphvascular region. The mind boggling part about all this, the oncologist at Moffitt Cancer Center said there is nothing to be worried about! I am deeply concerned,
I am in physical pain and just had a CT and it shows my 7th rib had a fracture and is healing. In addition is showed an infection in my 6th rib which is the rib the surgeon took 2cm from and sent to the lab during the lobectomy.

I am concerned that I cannot find a lung NET doctor to connect the dots, that something is not right. I shouldn’t be going backwards 3 months after surgery when the first 3 months after surgery there was nothing, no pain beyond the normal surgery pain, I could breathe, I wasn’t coughing, there were no growths, no fractures, no fibrosis showing up on an X-ray, no middle lobe collapse. May, June and most of July everything was healing and then I was in pain, shortness of breath, etc. But yet the doctors say it is all post surgery effects. The hardest part, the pain has not gone away and it is not healing and they say there is nothing they can do but give me an inhaler and pain medicine, which the pulmonary function tests showed that the inhaler does nothing! Can I have just one oncologist, pulmonary lung NET specialist take an honest look at the scans and not rely on the technician’s or radiologist interpretation, or maybe a radiologist who is versed with lung NETS?

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I’m very sorry to hear it. It is difficult to cope when one is in pain. How did You feel after the Copper64 test? Wishing You the best,

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@margaret12

I’m very sorry to hear it. It is difficult to cope when one is in pain. How did You feel after the Copper64 test? Wishing You the best,

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The copper scan feels like any other nuclear medicine scan, it feels just like a gallium scan or CT scan with contrast even; warm and as though you have a full bladder and later a slight headache. Just drink a lot of water and take it easy for the rest of the day. I don’t like any scans, but the copper scan is faster and is very important.

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@melmangen

I also just had a copper scan August 2022 they found a hemangioma in my 5th vertebrae lit up had SUV as well as a 5th rib fracture with high SUV so I am very concerned who actually interperts the scan results because it sure doesn’t seem like radiologists or specialist that are familiar with lung NETS or any NETS. I just had a right upper lobe lobectomy May 2022 and had no other growths, hemangiomas, no fractures, no nothing prior to surgery and nothing until 3 months later at the end of July 2022 when I was in so much tboracic pain and my heart beating funny while resting, worsening cough, crackling and ripping in my lung and burning throbbing rib pain.

What is mind boggling is the PET copper scan found a new nodule starting to grow in my lower right lobe, again just three months after my right upper lobe lobectomy for a 3.5cm “typical” carcinoid that had metastasis to the angiolymphvascular region. The mind boggling part about all this, the oncologist at Moffitt Cancer Center said there is nothing to be worried about! I am deeply concerned,
I am in physical pain and just had a CT and it shows my 7th rib had a fracture and is healing. In addition is showed an infection in my 6th rib which is the rib the surgeon took 2cm from and sent to the lab during the lobectomy.

I am concerned that I cannot find a lung NET doctor to connect the dots, that something is not right. I shouldn’t be going backwards 3 months after surgery when the first 3 months after surgery there was nothing, no pain beyond the normal surgery pain, I could breathe, I wasn’t coughing, there were no growths, no fractures, no fibrosis showing up on an X-ray, no middle lobe collapse. May, June and most of July everything was healing and then I was in pain, shortness of breath, etc. But yet the doctors say it is all post surgery effects. The hardest part, the pain has not gone away and it is not healing and they say there is nothing they can do but give me an inhaler and pain medicine, which the pulmonary function tests showed that the inhaler does nothing! Can I have just one oncologist, pulmonary lung NET specialist take an honest look at the scans and not rely on the technician’s or radiologist interpretation, or maybe a radiologist who is versed with lung NETS?

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Mel, I responded to you in another discussion but thought I might answer your question here too.

Mayo Clinic in Jacksonville, Florida might be an option for you. Mayo Clinic, Florida has top-ranking NETs and lung cancer specialists. Your care team is composed of experts in different fields who work together to determine your lung NETs cancer treatment options. This team approach means your care is coordinated to meet your needs so that you receive the treatment that's best for you.

You can find out more about seeking a second opinion, either by scheduling a phone appointment with a coordinator or submitting an online form. See more here: http://mayocl.in/1mtmR63

Let me know if you have any question about submitting a request online.

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