Three tests were done - Sept 2015, April 2016 and Oct 2016. The Sept 2015 showed a low probability of NETs (this was followed by open abdominal surgery to rescect ileum and liver. The April 2016 showed a 'high, 80% probability) and my wife was NED at that time.
The third in Oct 2016 showed a 26.7% probability and was followed in Dec 2016 with open abdominal surgery in Dec 2016. Dr. Haldanarson's office notes were - She has had three NETests done. The study done on September 28, 2015, was 26.7, which falls into the low-risk range; the study April 15, 2016, was 80%, or in the high-risk range; and lastly, it was done on October 14, 2016, and it was down to 26.7. I do not know if the NETest is reliable in her situation given the high suspicion for recurrent tumor in the setting of a low-risk result.
Dr. Kidd at WREN labs called her case 'interesting'. He requested and we sent them my wifes labs and surgical report.
Hi @gtassithomas, you'll notice that I moved your message to an existing discussion where @megansims asked similar questions about the NET test. Click VIEW & REPLY to read through past responses as well as today's replies by the ever-helpful @tomewilson
Three tests were done - Sept 2015, April 2016 and Oct 2016. The Sept 2015 showed a low probability of NETs (this was followed by open abdominal surgery to rescect ileum and liver. The April 2016 showed a 'high, 80% probability) and my wife was NED at that time.
The third in Oct 2016 showed a 26.7% probability and was followed in Dec 2016 with open abdominal surgery in Dec 2016. Dr. Haldanarson's office notes were - She has had three NETests done. The study done on September 28, 2015, was 26.7, which falls into the low-risk range; the study April 15, 2016, was 80%, or in the high-risk range; and lastly, it was done on October 14, 2016, and it was down to 26.7. I do not know if the NETest is reliable in her situation given the high suspicion for recurrent tumor in the setting of a low-risk result.
Dr. Kidd at WREN labs called her case 'interesting'. He requested and we sent them my wifes labs and surgical report.
When you last posted, you were going to be having some additional NET testing. Did you have those tests? I hope that you got some information that would be helpful. How are you feeling?
Teresa, Thanks for checking in. I just actually had the NETest repeated and am waiting for the result. I have been on quite the roller coaster rise, which is still continuing. I am scheduled to come back to Mayo at the end of October for more testing and to meet with a thoracic surgeon. THe doctors are still uncertain about my mediastinal mass and had been certain that it was an old scar formation from an old histoplasmosis infection. On further exam, the mass is quite vascular, though, which is more indicative of a NET than an old infection. We will see. It would be nice to have some answers after such a long, long time.
Teresa, Thanks for checking in. I just actually had the NETest repeated and am waiting for the result. I have been on quite the roller coaster rise, which is still continuing. I am scheduled to come back to Mayo at the end of October for more testing and to meet with a thoracic surgeon. THe doctors are still uncertain about my mediastinal mass and had been certain that it was an old scar formation from an old histoplasmosis infection. On further exam, the mass is quite vascular, though, which is more indicative of a NET than an old infection. We will see. It would be nice to have some answers after such a long, long time.
I so appreciate the update, @megansims. I agree that you have certainly been on a roller coaster ride. I admire your tenacity, you certainly don't give up easily which is so important in finding answers!
How are you feeling now? Do you have much discomfort or other bothersome symptoms?
Teresa, I have symptoms that come and go.sometimes I have long periods of time where I feel okay, but always have a persistent fatigue/exhaustion that is hard with three !little ones, homeschooling, working, etc. I have persistent flushing, mild tachycardia, and intermittent diarrhea. The most bothersome symptom, however, is the cough, wheezing, and feeling like someone is squeezing my left lung. It is so odd, however, because the symptoms all come and go. I would love to have some answers. We will see. The Pulmonologist from Mayo called last week. He had been under the impression that the last scan was fine, it when he looked into it further he realized that the mass was described as highly vascular. He seemed surprised by it and a little bit alarmed. Sometimes, I feel like they want to put me in a box that I just do not quite fit into....
Teresa, I have symptoms that come and go.sometimes I have long periods of time where I feel okay, but always have a persistent fatigue/exhaustion that is hard with three !little ones, homeschooling, working, etc. I have persistent flushing, mild tachycardia, and intermittent diarrhea. The most bothersome symptom, however, is the cough, wheezing, and feeling like someone is squeezing my left lung. It is so odd, however, because the symptoms all come and go. I would love to have some answers. We will see. The Pulmonologist from Mayo called last week. He had been under the impression that the last scan was fine, it when he looked into it further he realized that the mass was described as highly vascular. He seemed surprised by it and a little bit alarmed. Sometimes, I feel like they want to put me in a box that I just do not quite fit into....
So many of us with NETs just don't quite fit into "the box." It is frustrating for both the patient and the doctors who are treating the patient. I'm curious about what you describe as the "highly vascular" mass. Did the doctor say if this was typical of NETs?
Are there any meds that help with the flushing and intermittent diarrhea? What about the wheezing? Do inhalers, etc. help with that?
I do understand the exhaustion. You have a busy schedule with young children, homeschooling and working. Take as many rest breaks as you can, you undoubtedly need that.
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Three tests were done - Sept 2015, April 2016 and Oct 2016. The Sept 2015 showed a low probability of NETs (this was followed by open abdominal surgery to rescect ileum and liver. The April 2016 showed a 'high, 80% probability) and my wife was NED at that time.
The third in Oct 2016 showed a 26.7% probability and was followed in Dec 2016 with open abdominal surgery in Dec 2016. Dr. Haldanarson's office notes were - She has had three NETests done. The study done on September 28, 2015, was 26.7, which falls into the low-risk range; the study April 15, 2016, was 80%, or in the high-risk range; and lastly, it was done on October 14, 2016, and it was down to 26.7. I do not know if the NETest is reliable in her situation given the high suspicion for recurrent tumor in the setting of a low-risk result.
Dr. Kidd at WREN labs called her case 'interesting'. He requested and we sent them my wifes labs and surgical report.
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1 ReactionHi @gtassithomas, you'll notice that I moved your message to an existing discussion where @megansims asked similar questions about the NET test. Click VIEW & REPLY to read through past responses as well as today's replies by the ever-helpful @tomewilson
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1 ReactionThank you for that info.
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1 ReactionHello @megansims
When you last posted, you were going to be having some additional NET testing. Did you have those tests? I hope that you got some information that would be helpful. How are you feeling?
Teresa, Thanks for checking in. I just actually had the NETest repeated and am waiting for the result. I have been on quite the roller coaster rise, which is still continuing. I am scheduled to come back to Mayo at the end of October for more testing and to meet with a thoracic surgeon. THe doctors are still uncertain about my mediastinal mass and had been certain that it was an old scar formation from an old histoplasmosis infection. On further exam, the mass is quite vascular, though, which is more indicative of a NET than an old infection. We will see. It would be nice to have some answers after such a long, long time.
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Like -
Helpful -
Hug
1 ReactionI so appreciate the update, @megansims. I agree that you have certainly been on a roller coaster ride. I admire your tenacity, you certainly don't give up easily which is so important in finding answers!
How are you feeling now? Do you have much discomfort or other bothersome symptoms?
Teresa, I have symptoms that come and go.sometimes I have long periods of time where I feel okay, but always have a persistent fatigue/exhaustion that is hard with three !little ones, homeschooling, working, etc. I have persistent flushing, mild tachycardia, and intermittent diarrhea. The most bothersome symptom, however, is the cough, wheezing, and feeling like someone is squeezing my left lung. It is so odd, however, because the symptoms all come and go. I would love to have some answers. We will see. The Pulmonologist from Mayo called last week. He had been under the impression that the last scan was fine, it when he looked into it further he realized that the mass was described as highly vascular. He seemed surprised by it and a little bit alarmed. Sometimes, I feel like they want to put me in a box that I just do not quite fit into....
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Like -
Helpful -
Hug
1 Reaction@megansims
So many of us with NETs just don't quite fit into "the box." It is frustrating for both the patient and the doctors who are treating the patient. I'm curious about what you describe as the "highly vascular" mass. Did the doctor say if this was typical of NETs?
Are there any meds that help with the flushing and intermittent diarrhea? What about the wheezing? Do inhalers, etc. help with that?
I do understand the exhaustion. You have a busy schedule with young children, homeschooling and working. Take as many rest breaks as you can, you undoubtedly need that.