CT / PET results back
There is a soft tissue density lesion of slightly higher attenuation than normal tongue tissue, measuring apprx. 4.8 x 1 x 5.3 cm and involves the left lateral tongue as well as crossing midline at the tip of the tongue and extends to the floor of the mouth. This lesion does not appear to invade the hard palate. There is also hypoattenuating lesion in the inferior lateral left tongue without rim enhancement measuring 1.1 x 1.3 cm. There is asymetrical enlargement of left lymph nodes at stations IB, IIB, III and IV. These scattered lymph nodes are not enlarged by CT criteria but are enhanced and concerning for malignant involvement.
The findings of the PET:
Hypermetabolic left-sided tongue masss on image mesures 4.5 x 2 x 5.5 cm in AP, transverse and craniocaudad with SUV value of 23.9. There are mildly enlarged hypermetabolic left lymph nodes at station IB and IIB and III. Mildly hypermetabolic left station IV lymph node on image. Minimal activity along the left lower lobe bronchus without associated pulmonary nodule is likely inflammatory. Normal GI and GU activity. No other PET abnormality identified.
SO.....I have no idea what all this means but this is what the ENT specialist suggested:
That surgery is going to be needed to be done first. He want to remove most of the left side of my tongue that is cancerous plus an additional 2 cm area around the tumor. He says that a feeding tube will be needed either thru the nose or stomach (he says go with the nose).
Also, he wants to do a neck dissection that will remove both the left and right side lymph nodes 'to be safe'.
My thoughts: I thought that I may be able to do some radiation treatments to reduce the size of the tumor as I am concerned to be losing so much of my tongue. Will I ever be able to eat real food again? Will my speech ever be normal again? etc...etc.
I am meeting with a Radiation Oncologist on Tuesday and a Chemo Oncologist the following Tuesday. The surgery is scheduled for June 21st and feel like I only have 3 weeks left of being 'normal' around my wife and two sons, ages 5 and 6. I have no idea how to even explain this to them.
Very scared and anxious right now.
Thanks for letting me share. Please share back with suggestions or thoughts.
Thank you all so much.
Bob
Comments
-
Hi Bob
Hard to think straight when so much gets piled on your plate. I have a few thoughts to share with you. You have two things going here. First, there is a large tumor in the left tongue, extending to the floor of the mouth. Second, there is presumptive evidence that tumor is present in more than one lymph node on the left. This puts you in a situation where you need treatment targeted to a fairly large area. It makes sense to operate for the tongue lesion. It is simply too large to count on radiation alone to remove it. As it extends past the tongue to the floor of the mouth, this will be pretty extensive surgery. For this surgery, an NG tube is ok. It will be small diameter, and probably wont need to be in for more than a week or so.
The plan to do a bilateral neck dissection makes less sense to me. My logic tells me you will need radiation after your tongue surgery anyway, and why you need a neck dissection on either side (especally on the right where there is no enidence of disease) is puzzling. They could do the tongue surgery first, decide the issue of radiation, and reserve the neck dissection for in case there are nodes that dont respond to rads. Or they could do the neck dissection later anyway, should your tongue surgery prove to be definitive (again, I dont think it will).
You are curable. But as you stated your situation, Im concerned you will end up being overtreated. This is really major stuff you are facing. Have you considered getting a second opinion?
best regards,
Pat0 -
Thanks Pat..longtermsurvivor said:Hi Bob
Hard to think straight when so much gets piled on your plate. I have a few thoughts to share with you. You have two things going here. First, there is a large tumor in the left tongue, extending to the floor of the mouth. Second, there is presumptive evidence that tumor is present in more than one lymph node on the left. This puts you in a situation where you need treatment targeted to a fairly large area. It makes sense to operate for the tongue lesion. It is simply too large to count on radiation alone to remove it. As it extends past the tongue to the floor of the mouth, this will be pretty extensive surgery. For this surgery, an NG tube is ok. It will be small diameter, and probably wont need to be in for more than a week or so.
The plan to do a bilateral neck dissection makes less sense to me. My logic tells me you will need radiation after your tongue surgery anyway, and why you need a neck dissection on either side (especally on the right where there is no enidence of disease) is puzzling. They could do the tongue surgery first, decide the issue of radiation, and reserve the neck dissection for in case there are nodes that dont respond to rads. Or they could do the neck dissection later anyway, should your tongue surgery prove to be definitive (again, I dont think it will).
You are curable. But as you stated your situation, Im concerned you will end up being overtreated. This is really major stuff you are facing. Have you considered getting a second opinion?
best regards,
Pat
Yes it is a lot to absorb at once for sure. I was originally under the impression that some rad treatment may be possible to at least shrink the size of the tumor on the tongue, to at least salvage as much as possible.
The area in question is a large amount of 'scar tissue' that has built up over time around my tongue from the top, side and underneath due to seizures in the past where I had bitten through my tongue. Just due to the fact that it gets in the way from normal every day eating and talking, I was always used to a bit of pain and biting it occasionally. This constant trauma to the tongue is possible (says the doctor) for the onset of the formation of cancer there.
So yes, I was thinking of getting my imaging results on disc from the hospital, and yes, getting a second opinion on how to go about the surgeries. Maybe having another doctor look at them may be a good idea. I don't want to sound vain, but I feel that trying to save as much of the tongue as possible is important. As far as the lymph node go - I don't understand either why they want to remove both sides.
Thank you so much for your input. For as the 21st approches, I'd rather have as much information and options as possible before I go under the knife.
- Bob0 -
Hi BobBarefootBob said:Thanks Pat..
Yes it is a lot to absorb at once for sure. I was originally under the impression that some rad treatment may be possible to at least shrink the size of the tumor on the tongue, to at least salvage as much as possible.
The area in question is a large amount of 'scar tissue' that has built up over time around my tongue from the top, side and underneath due to seizures in the past where I had bitten through my tongue. Just due to the fact that it gets in the way from normal every day eating and talking, I was always used to a bit of pain and biting it occasionally. This constant trauma to the tongue is possible (says the doctor) for the onset of the formation of cancer there.
So yes, I was thinking of getting my imaging results on disc from the hospital, and yes, getting a second opinion on how to go about the surgeries. Maybe having another doctor look at them may be a good idea. I don't want to sound vain, but I feel that trying to save as much of the tongue as possible is important. As far as the lymph node go - I don't understand either why they want to remove both sides.
Thank you so much for your input. For as the 21st approches, I'd rather have as much information and options as possible before I go under the knife.
- Bob
I agree with Pat on the second opinion as in my care I was not treated correctly the first time because I was the doctor’s first case of NPC cancer, but he did not tell me that. Sound like you have a lot on your plate right now but in the long run it will be worth it. I am not sure where you are getting your treatment just make sure it is at one of the major cancer institution and not some little city clinic.
Wishing you the very best and Welcome to CSN
Hondo0 -
don't feel pushed for timeBarefootBob said:Thanks Pat..
Yes it is a lot to absorb at once for sure. I was originally under the impression that some rad treatment may be possible to at least shrink the size of the tumor on the tongue, to at least salvage as much as possible.
The area in question is a large amount of 'scar tissue' that has built up over time around my tongue from the top, side and underneath due to seizures in the past where I had bitten through my tongue. Just due to the fact that it gets in the way from normal every day eating and talking, I was always used to a bit of pain and biting it occasionally. This constant trauma to the tongue is possible (says the doctor) for the onset of the formation of cancer there.
So yes, I was thinking of getting my imaging results on disc from the hospital, and yes, getting a second opinion on how to go about the surgeries. Maybe having another doctor look at them may be a good idea. I don't want to sound vain, but I feel that trying to save as much of the tongue as possible is important. As far as the lymph node go - I don't understand either why they want to remove both sides.
Thank you so much for your input. For as the 21st approches, I'd rather have as much information and options as possible before I go under the knife.
- Bob
knowing your surgery is scheduled for the 21st, it can be postponed, if necessary. The nerve supply to the tongue goes through the floor of the mouth, in close proximity to the underside of the tongue. You will almost for sure wind up with half a functional tongue no matter whether they are conser.vative in your surgery or not. One of my cancers was in the floor of the mouth, close to the tongue. I can guarantee you that half a tongue willnserve you acceptably. Both for speech, and for eating. Although if you can whistle afyer this surgery, you're a better man than me:)0 -
Don't rush.longtermsurvivor said:don't feel pushed for time
knowing your surgery is scheduled for the 21st, it can be postponed, if necessary. The nerve supply to the tongue goes through the floor of the mouth, in close proximity to the underside of the tongue. You will almost for sure wind up with half a functional tongue no matter whether they are conser.vative in your surgery or not. One of my cancers was in the floor of the mouth, close to the tongue. I can guarantee you that half a tongue willnserve you acceptably. Both for speech, and for eating. Although if you can whistle afyer this surgery, you're a better man than me:)
Hi Bob, I'm not one to give advice on which way to go as I'm not as
knowlegable on Cancers as many on the board but as Pat says get a second opinion.
My situation was :
ENT surgeon wanted to do TORS to remove tumor
( I had a 3.7 x 1.0 x 2.5 cm on left tonsil)
Neck disection even though no nodes were involved T20N0M
Followed by rads &chemo.
I met with the Rad Onc and she said she could have the
Same outcome with Rads ONLY.
So after long talks with my family I opted for the Rads only which I finished
Six weeks ago. My tumor was very visible in the mouth, now there is nothing
( only the usual blisters) but I will not know for sure until my first post treatment
scan at the end of june. But with the grace of god it will be NED.
Do what you think is best for you and not what is best for your doctor.
God bless
Tonsil dad,
Dan.0 -
Hi Barefoot...Tonsil Dad said:Don't rush.
Hi Bob, I'm not one to give advice on which way to go as I'm not as
knowlegable on Cancers as many on the board but as Pat says get a second opinion.
My situation was :
ENT surgeon wanted to do TORS to remove tumor
( I had a 3.7 x 1.0 x 2.5 cm on left tonsil)
Neck disection even though no nodes were involved T20N0M
Followed by rads &chemo.
I met with the Rad Onc and she said she could have the
Same outcome with Rads ONLY.
So after long talks with my family I opted for the Rads only which I finished
Six weeks ago. My tumor was very visible in the mouth, now there is nothing
( only the usual blisters) but I will not know for sure until my first post treatment
scan at the end of june. But with the grace of god it will be NED.
Do what you think is best for you and not what is best for your doctor.
God bless
Tonsil dad,
Dan.
Low guy on the totem pole here and the above forum posters are far more knowledgeable than me ...but I wanted to let you know I will be praying for you!!!!! It's all I have to offer and I think you are quite pro-active (as evidenced by your posts) and you will do great!!!
Best,
Tim0 -
ENT vs SurgeonPam M said:I'm with Tim
No useful info to contribute, but want you to know I'm in your cheering section.
Our cases are somewhat different but also alike in some ways. First, I am in total agreement with Pat's suggestions.
I had a base of tongue tumor and infected lymph nodes. My ENT did the biopsy but after that she referred me to the best Head and Neck Surgeon in Nevada. He removed the tumor first with TORS and left the neck dissection for later. I did ask why he wouldn't do them both at the same time and was told it was too much to heal from. Let the tongue heal then do the neck. My lymph nodes were on the right but he cut all the way across so as to move my left major salivary gland out of the way of radiation so I'd have at least 50% of saliva. After my first surgery I was very grateful we split it up.
Why he wants to do the right side of your neck is questionable. Like the others said, I would go for another opinion and try to find a H&N surgeon only. Mine had years of experience and it showed.
You will get through this just like we all have. It won't be fun but it will save your life. Be grateful you live in a time of great medical care.
Tom0 -
All I can share is what they are doing with me........tommyodavey said:ENT vs Surgeon
Our cases are somewhat different but also alike in some ways. First, I am in total agreement with Pat's suggestions.
I had a base of tongue tumor and infected lymph nodes. My ENT did the biopsy but after that she referred me to the best Head and Neck Surgeon in Nevada. He removed the tumor first with TORS and left the neck dissection for later. I did ask why he wouldn't do them both at the same time and was told it was too much to heal from. Let the tongue heal then do the neck. My lymph nodes were on the right but he cut all the way across so as to move my left major salivary gland out of the way of radiation so I'd have at least 50% of saliva. After my first surgery I was very grateful we split it up.
Why he wants to do the right side of your neck is questionable. Like the others said, I would go for another opinion and try to find a H&N surgeon only. Mine had years of experience and it showed.
You will get through this just like we all have. It won't be fun but it will save your life. Be grateful you live in a time of great medical care.
Tom
My ENT is also one for waiting on the neck dissection...we're treating my NPC with chemo and radiation....3 months after the rads are done, I will get another PET scan and see if the nodes that had cancer in them still light up. If they don't, then I will be able to skip that pleasure. If I'd had nothing light up originally, I'd be leery of getting the dissection "just in case" since you will be going for a scan again three months or so after the radiation is finished.
p0 -
In Agreement...phrannie51 said:All I can share is what they are doing with me........
My ENT is also one for waiting on the neck dissection...we're treating my NPC with chemo and radiation....3 months after the rads are done, I will get another PET scan and see if the nodes that had cancer in them still light up. If they don't, then I will be able to skip that pleasure. If I'd had nothing light up originally, I'd be leery of getting the dissection "just in case" since you will be going for a scan again three months or so after the radiation is finished.
p
First thank you all for all your input. You have all answered most of my concerns and informed me on the options that lay before me. When I see the Radiologist on Tuesday I will discuss with him the options, and the same with the Chemo Oncologist the following Tuesday. All of your suggestions are overwhelmingly helpful in this confusing and scary time. I have never felt so lost in being able to make a good, thorough, informed and most importantly, the BEST decision.
Thank you all again please continue to share as I will too as I know more on Tues. and possibly start looking for a second opinion.
Much Love,
Bob0 -
In Agreement...phrannie51 said:All I can share is what they are doing with me........
My ENT is also one for waiting on the neck dissection...we're treating my NPC with chemo and radiation....3 months after the rads are done, I will get another PET scan and see if the nodes that had cancer in them still light up. If they don't, then I will be able to skip that pleasure. If I'd had nothing light up originally, I'd be leery of getting the dissection "just in case" since you will be going for a scan again three months or so after the radiation is finished.
p
First thank you all for all your input. You have all answered most of my concerns and informed me on the options that lay before me. When I see the Radiologist on Tuesday I will discuss with him the options, and the same with the Chemo Oncologist the following Tuesday. All of your suggestions are overwhelmingly helpful in this confusing and scary time. I have never felt so lost in being able to make a good, thorough, informed and most importantly, the BEST decision.
Thank you all again please continue to share as I will too as I know more on Tues. and possibly start looking for a second opinion.
Much Love,
Bob0 -
Bob..BarefootBob said:In Agreement...
First thank you all for all your input. You have all answered most of my concerns and informed me on the options that lay before me. When I see the Radiologist on Tuesday I will discuss with him the options, and the same with the Chemo Oncologist the following Tuesday. All of your suggestions are overwhelmingly helpful in this confusing and scary time. I have never felt so lost in being able to make a good, thorough, informed and most importantly, the BEST decision.
Thank you all again please continue to share as I will too as I know more on Tues. and possibly start looking for a second opinion.
Much Love,
Bob
I am new to all of this but wanted you to know I was thinking of you and you will be in my prayers. I just like you have young kids and it was so very hard to explain to them what was going to be happening. My youngest still crys because he is scared I am going to be having surgery. It is so much to take in when you are first told. I also went to an ENT but then went to an oncologist to make sure what the ENT wanted to do was the best decesion. I knew nothing about all of this so when he told me the ENT had good plans I felt better about all of this. I have surgery on the 19th to have about 1/4 in taken off the left side of my tongue and about almost the whole legnth of my tongue. I am going to have a partial neck disection done to the same side as the lesion to check for any cancer that the pet scan didn't show. I also was told since I had an ulcer that kept showing up in the same spot on my tongue due to a bad tooth and then me biting my tongue at night because of stress probably caused the cancer spot. I would seek another opinion just because it does help you feel better about with whats about to happen. Good luck!0 -
get that second opinion
My husband had a tumor at the base of his tongue just a bit smaller than yours with two lyph nodes involved. His ENT did not recomend surgery first. His treatment was 40 rads and 3 chemo (he was only able to do two chemo) After rads the tumor was completely gone and the lyph nodes were back to normal. One difference was that his did not extend to the floor of the mouth. That may be the difference, But I would get a second opinion since you have time before surgery. You are young I assume by the age of your children so that is in your favor. Get radiation doctors opinion about feeding tube location. Some recommend gastro before rads start so you do not have to have it put in during treatment if you can't swallow. Maintaining weight is the most important thing during treatment.
I am praying for you and your family during this stressful time.
Debbie0 -
Nita...NitaNita said:Bob..
I am new to all of this but wanted you to know I was thinking of you and you will be in my prayers. I just like you have young kids and it was so very hard to explain to them what was going to be happening. My youngest still crys because he is scared I am going to be having surgery. It is so much to take in when you are first told. I also went to an ENT but then went to an oncologist to make sure what the ENT wanted to do was the best decesion. I knew nothing about all of this so when he told me the ENT had good plans I felt better about all of this. I have surgery on the 19th to have about 1/4 in taken off the left side of my tongue and about almost the whole legnth of my tongue. I am going to have a partial neck disection done to the same side as the lesion to check for any cancer that the pet scan didn't show. I also was told since I had an ulcer that kept showing up in the same spot on my tongue due to a bad tooth and then me biting my tongue at night because of stress probably caused the cancer spot. I would seek another opinion just because it does help you feel better about with whats about to happen. Good luck!
Thank you for your kind words. I am actually looking forward to seeing the Radiologist Oncologist tomorrow morning. I hope that his words will be just as encouraging as yours. God bless you and your family - Its weird how we worry about others more in times like this as now that I am in the best hands possible here in Illinois. I still will seek a second opinion if I am not fully comfortable with all the surgery at once and so quick.
Good luck with your surgery on the 19th. It seems that we will most likely be going through all this at the same time. My prayers will be with you as well.
Take care of yourself and stay positive.
-Bob0 -
also in IllinoisBarefootBob said:Nita...
Thank you for your kind words. I am actually looking forward to seeing the Radiologist Oncologist tomorrow morning. I hope that his words will be just as encouraging as yours. God bless you and your family - Its weird how we worry about others more in times like this as now that I am in the best hands possible here in Illinois. I still will seek a second opinion if I am not fully comfortable with all the surgery at once and so quick.
Good luck with your surgery on the 19th. It seems that we will most likely be going through all this at the same time. My prayers will be with you as well.
Take care of yourself and stay positive.
-Bob
Bob, I just now caught the fact that you are in Illinois. Where at and where are you being treated ? I am in suburban Chicago and was treated at Loyola Medical Center.0 -
Hi IngridIngrid K said:also in Illinois
Bob, I just now caught the fact that you are in Illinois. Where at and where are you being treated ? I am in suburban Chicago and was treated at Loyola Medical Center.
I am downstate in Peoria, and will be getting my treatment at OSF Medical Center, Methodist Hospital and the Illinois Canter Center. The actual surgical procedures will be done at Methodist though.0 -
It's amazing
how little kids comprehend that something is wrong with Daddy ( or Mommy ), be truthful at their level of understanding, let them know that Daddy is going to be alright but he has a big booboo the Doctor needs to take care of.
My little Grandsons 9,6 and 4 were so curious~~we kept them informed of how Grandmom was doing....the 2 oldest live in the Chicago area ( Arlington Heights ) so I didn't see them, but they called almost everyday and their questions were so funny...the little one saw me all the time, a little leery at first, but he quickly adjusted to Grandmom being a little slowed down....
My prayers and best wishes go out to you and your family and also to Nita and her family....0
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