@lls8000
I was diagnosed with a right middle lobe endocrine tumor, 1st they said typical non thinking bordering on atypical.
Just had a second opinion and surgery is recommended for the best outcome. It is a large area to radiate. One said yes to radiation and the other said no. They are not sure if chemo would be successful for this type.
Tumor is very close to my heart.
After going back and forth and endless reading I have decided to go with the surgery.
I am worried about long term shortness of breath. That is worrying me the most.
@juliab56 i would strongly suggest you go to a cardiologist first and be checked out. that way you have a baseline of your heart‘s condition before you do any treatments. Afterwards, you can have your heart checked out again after treatment for damage.
Please keep us updated!
@juliab56 Have you had testing by a pulmonologist? Do you already have existing breathing issue?
I had copd before the surgery but I didn’t notice more difficulty breathing after. I remained very active
@lls8000
I was diagnosed with a right middle lobe endocrine tumor, 1st they said typical non thinking bordering on atypical.
Just had a second opinion and surgery is recommended for the best outcome. It is a large area to radiate. One said yes to radiation and the other said no. They are not sure if chemo would be successful for this type.
Tumor is very close to my heart.
After going back and forth and endless reading I have decided to go with the surgery.
I am worried about long term shortness of breath. That is worrying me the most.
@juliab56 Have you had testing by a pulmonologist? Do you already have existing breathing issue?
I had copd before the surgery but I didn’t notice more difficulty breathing after. I remained very active
@lls8000
I was diagnosed with a right middle lobe endocrine tumor, 1st they said typical non thinking bordering on atypical.
Just had a second opinion and surgery is recommended for the best outcome. It is a large area to radiate. One said yes to radiation and the other said no. They are not sure if chemo would be successful for this type.
Tumor is very close to my heart.
After going back and forth and endless reading I have decided to go with the surgery.
I am worried about long term shortness of breath. That is worrying me the most.
@juliab56 I had a right lower lobectomy almost 3 years ago and I really haven't noticed shortness of breath issues. Then again, I don't run marathons! Climbing stairs and normal daily activity is no problem . And remember, the lower lobe is bigger than the middle lobe so you'll do fine
@diyayane , I'm assuming that you are on the other side of surgery now and hope you are doing as well as expected. Were there any surprising findings, or are you still waiting for the final pathology report? When do you have a follow up appointment?
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@juliab56 i would strongly suggest you go to a cardiologist first and be checked out. that way you have a baseline of your heart‘s condition before you do any treatments. Afterwards, you can have your heart checked out again after treatment for damage.
Please keep us updated!
@juliab56 Have you had testing by a pulmonologist? Do you already have existing breathing issue?
I had copd before the surgery but I didn’t notice more difficulty breathing after. I remained very active
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1 Reaction@juliab56, I updated the title of your discussion to reflect your questions and added it to the Neuroendocrine Tumors (NETs) support group as well https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
I agree with @loulou2023 about working with cardiology. Have you heard about a specialty called cardio-oncology?
Mayo Clinic offers expertise in addressing heart problems (called cardio-oncology), potential or current issues. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.
You might ask if they have cardio-oncology as a specialty where you receive care.
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I don’t currently have any breathing issues. Spirometry was good. I am just worried about breathing after right pneumonectomy.
@colleenyoung
Thank you for informing me of that. I will be having an echo prior to surgery.
@juliab56 I had a right lower lobectomy almost 3 years ago and I really haven't noticed shortness of breath issues. Then again, I don't run marathons! Climbing stairs and normal daily activity is no problem . And remember, the lower lobe is bigger than the middle lobe so you'll do fine
@diyayane , I'm assuming that you are on the other side of surgery now and hope you are doing as well as expected. Were there any surprising findings, or are you still waiting for the final pathology report? When do you have a follow up appointment?
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