I was just diagnosed with Neuroendocrine tumor located next to my vocal cord which I am told is very rare. My first visit it was an assumption that is what it maybe and a biopsy confirmed it. It is about the size of a walnut. I know it is slow growing but do not know if it is producing hormones which could later affect me in different ways. I am 63 years old and just want it out of me however the risk is damaging vocal cords. I guess what I am asking it should I have the surgery and take it out now while healthy rather waiting 3 or more years to see if still growing and could spread.
I was just diagnosed with Neuroendocrine tumor located next to my vocal cord which I am told is very rare. My first visit it was an assumption that is what it maybe and a biopsy confirmed it. It is about the size of a walnut. I know it is slow growing but do not know if it is producing hormones which could later affect me in different ways. I am 63 years old and just want it out of me however the risk is damaging vocal cords. I guess what I am asking it should I have the surgery and take it out now while healthy rather waiting 3 or more years to see if still growing and could spread.
Hello @sgt147 and welcome to the NETs discussion group on Mayo Clinic Connect. Yes, I'm sure that a NET next to the vocal cord is very rare. You are asking very good questions about whether or not to have surgery now or wait.
Has your medical team suggested that you have a 68 Gallium Dotatate PET to determine if there are any other NETs in other locations? Here is some information about this specialized test to locate other NETs. https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
This test is usually available at research-oriented and/or cancer centers but probably not available at smaller hospital systems.
If you are comfortable sharing more, what type of symptoms were you having that led to the discovery of this NET?
Hi @hopeful33250, They said it was well defined and not in any glands or thyroid so its not spreading yet. It was discovered through a routine physical on a xray. My hcp questioned it to have more tests so I had a MRI and PET done. I did then have the biopsy and confirmed the diagnosis. I have and appointment to view the pathology report with my specialist this Monday. As I mentioned initially he said it is a probably slow growing tumor but my concern is of course he cant tell me it won't grow or interfere with anything but why wait. As you get older its not any easier and why not be cancer free if it is taken out.
I am curious since this is in a rare area for this type of surgery, do you know of any Dr. that has performed this surgery and how many times. My surgeon said he has only seen a few of these in 15 years so I believe he may not have the skills to perform this type of surgery in the are that the tumor is in
I am curious since this is in a rare area for this type of surgery, do you know of any Dr. that has performed this surgery and how many times. My surgeon said he has only seen a few of these in 15 years so I believe he may not have the skills to perform this type of surgery in the are that the tumor is in
This is a good question, @sgt147. I have had vocal cord surgery, but not because of NETs. It is probably important to seek out a specialist in vocal cord surgery. If it were me, I would search out a specialist in this area. When you have your next appointment, you might ask who the best surgeon for this surgery would be.
It’s wise to seek medical advice however know with treatments there is a possibility to shrink the tumor size to something that is more workable with a higher success rate. You just have to weigh the risk vs the reward.
My treatments reduced my tumors by 50 percent. My tumors were deed non-removable so I was happy with the results.
It’s wise to seek medical advice however know with treatments there is a possibility to shrink the tumor size to something that is more workable with a higher success rate. You just have to weigh the risk vs the reward.
My treatments reduced my tumors by 50 percent. My tumors were deed non-removable so I was happy with the results.
My wife has stage 4 technically with mass on pancreas and metastasis on liver. But after 8 months of chemo/Lanreotide injections, our team was able to take out what was left after a 80% reduction in size in both areas. We are looking good for now, need to keep checking it every 90 days to monitor bit.
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I was just diagnosed with Neuroendocrine tumor located next to my vocal cord which I am told is very rare. My first visit it was an assumption that is what it maybe and a biopsy confirmed it. It is about the size of a walnut. I know it is slow growing but do not know if it is producing hormones which could later affect me in different ways. I am 63 years old and just want it out of me however the risk is damaging vocal cords. I guess what I am asking it should I have the surgery and take it out now while healthy rather waiting 3 or more years to see if still growing and could spread.
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Hug
2 ReactionsHello @sgt147 and welcome to the NETs discussion group on Mayo Clinic Connect. Yes, I'm sure that a NET next to the vocal cord is very rare. You are asking very good questions about whether or not to have surgery now or wait.
Has your medical team suggested that you have a 68 Gallium Dotatate PET to determine if there are any other NETs in other locations? Here is some information about this specialized test to locate other NETs.
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
This test is usually available at research-oriented and/or cancer centers but probably not available at smaller hospital systems.
If you are comfortable sharing more, what type of symptoms were you having that led to the discovery of this NET?
-
Like -
Helpful -
Hug
1 ReactionHi @hopeful33250, They said it was well defined and not in any glands or thyroid so its not spreading yet. It was discovered through a routine physical on a xray. My hcp questioned it to have more tests so I had a MRI and PET done. I did then have the biopsy and confirmed the diagnosis. I have and appointment to view the pathology report with my specialist this Monday. As I mentioned initially he said it is a probably slow growing tumor but my concern is of course he cant tell me it won't grow or interfere with anything but why wait. As you get older its not any easier and why not be cancer free if it is taken out.
-
Like -
Helpful -
Hug
3 ReactionsI am curious since this is in a rare area for this type of surgery, do you know of any Dr. that has performed this surgery and how many times. My surgeon said he has only seen a few of these in 15 years so I believe he may not have the skills to perform this type of surgery in the are that the tumor is in
-
Like -
Helpful -
Hug
2 ReactionsThis is a good question, @sgt147. I have had vocal cord surgery, but not because of NETs. It is probably important to seek out a specialist in vocal cord surgery. If it were me, I would search out a specialist in this area. When you have your next appointment, you might ask who the best surgeon for this surgery would be.
It’s wise to seek medical advice however know with treatments there is a possibility to shrink the tumor size to something that is more workable with a higher success rate. You just have to weigh the risk vs the reward.
My treatments reduced my tumors by 50 percent. My tumors were deed non-removable so I was happy with the results.
-
Like -
Helpful -
Hug
2 ReactionsMy wife has stage 4 technically with mass on pancreas and metastasis on liver. But after 8 months of chemo/Lanreotide injections, our team was able to take out what was left after a 80% reduction in size in both areas. We are looking good for now, need to keep checking it every 90 days to monitor bit.
-
Like -
Helpful -
Hug
3 Reactions