77 years old, female, no symptoms still being diagnosed. Tumor in left lower lung and left lung lymph node. Tumor board meets on Thursday.
I’m going to be getting a 2nd opinion. Can anyone recommend a center that has experience with lung NETs diagnosis and treatment. So much more is known about midgut NETs.
Thanks
Hello! Diagnosed with large Right lower lobe carcinoid tumor Jan. 2023. Robotic surgical removal of right lower lobe and lymph nodes near tumor. 4 day hospitalization. Surgeon was confident he got it all and nodes were negative. Every 6 month screening tests have been negative so far. I do use an inhaler now for vigorous exercise. I did not do well on pulmonary function tests and was worried about surgery. I was determined to get out of bed to walk and move apparently starting in the recovery room so I was told. Even if hurts -move as much as possible.
77 years old, female, no symptoms still being diagnosed. Tumor in left lower lung and left lung lymph node. Tumor board meets on Thursday.
I’m going to be getting a 2nd opinion. Can anyone recommend a center that has experience with lung NETs diagnosis and treatment. So much more is known about midgut NETs.
Thanks
@emilyfaith, offering you a virtual shoulder to lean on as you wait to hear bck from the tumor board. You're wise to seek a second opinion with a NETs specialty team. Mayo Clinic ranks among the best hospitals of neuroendocrine tumors if you would like to consider one of the Mayo locations in Rochester, Minnesota, Jacksonville, Florida, or Phoenix/Scottsdale, Arizona.
@emilyfaith, offering you a virtual shoulder to lean on as you wait to hear bck from the tumor board. You're wise to seek a second opinion with a NETs specialty team. Mayo Clinic ranks among the best hospitals of neuroendocrine tumors if you would like to consider one of the Mayo locations in Rochester, Minnesota, Jacksonville, Florida, or Phoenix/Scottsdale, Arizona.
We are all scared at some point. If not, you are not normal. Take a deep breath. Collect your thoughts and emotions. Share. Ask questions. You are amongst friends here. The more prepared you are for your treatment, the better it usually goes.
Hello! Diagnosed with large Right lower lobe carcinoid tumor Jan. 2023. Robotic surgical removal of right lower lobe and lymph nodes near tumor. 4 day hospitalization. Surgeon was confident he got it all and nodes were negative. Every 6 month screening tests have been negative so far. I do use an inhaler now for vigorous exercise. I did not do well on pulmonary function tests and was worried about surgery. I was determined to get out of bed to walk and move apparently starting in the recovery room so I was told. Even if hurts -move as much as possible.
It is good to hear from you again now that you are post-surgery. You must be very pleased to have the surgery behind you. That is wonderful that you are determined to walk as much as possible. It sounds like you are on the right road.
Regular follow ups are very typical after carcinoid surgery. Do you have a date for your next follow up?
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Welcome, @lchaney1951. I moved your question to the Neuroendocrine Tumors (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/ where you can meet others with lung carcinoid tumors like @collielady @tonyhasumners @emilyfaith @pattirushing @diana5 @kristin3 @californiazebra @rogo @melmangen @coco1 and many others.
@lchaney1951, have you had surgery or is it coming up?
I should also tag members @gmapam @ekri @jhhaas, whose carcinoid tumor was found in the right middle lobe to share their experiences.
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1 ReactionThank you.
Not yet. Have to have a PFT first. However I am so scared.
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1 Reaction77 years old, female, no symptoms still being diagnosed. Tumor in left lower lung and left lung lymph node. Tumor board meets on Thursday.
I’m going to be getting a 2nd opinion. Can anyone recommend a center that has experience with lung NETs diagnosis and treatment. So much more is known about midgut NETs.
Thanks
Hello! Diagnosed with large Right lower lobe carcinoid tumor Jan. 2023. Robotic surgical removal of right lower lobe and lymph nodes near tumor. 4 day hospitalization. Surgeon was confident he got it all and nodes were negative. Every 6 month screening tests have been negative so far. I do use an inhaler now for vigorous exercise. I did not do well on pulmonary function tests and was worried about surgery. I was determined to get out of bed to walk and move apparently starting in the recovery room so I was told. Even if hurts -move as much as possible.
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3 Reactions@emilyfaith, offering you a virtual shoulder to lean on as you wait to hear bck from the tumor board. You're wise to seek a second opinion with a NETs specialty team. Mayo Clinic ranks among the best hospitals of neuroendocrine tumors if you would like to consider one of the Mayo locations in Rochester, Minnesota, Jacksonville, Florida, or Phoenix/Scottsdale, Arizona.
Here's where to get started to request a second opinion http://mayocl.in/1mtmR63
@hopeful33250, would you be so kind as to post the list of NETs specialists from across the nation? I can't seem to put my finger on it.
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1 ReactionHello @emilyfaith,
If, for any reason, a Mayo appointment is not possible, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
Will you keep in touch as you seek a treatment plan?
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2 ReactionsWe are all scared at some point. If not, you are not normal. Take a deep breath. Collect your thoughts and emotions. Share. Ask questions. You are amongst friends here. The more prepared you are for your treatment, the better it usually goes.
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6 ReactionsHello @tonyhasumners
It is good to hear from you again now that you are post-surgery. You must be very pleased to have the surgery behind you. That is wonderful that you are determined to walk as much as possible. It sounds like you are on the right road.
Regular follow ups are very typical after carcinoid surgery. Do you have a date for your next follow up?