Never a dull moment.....
It's been a while since I posted (I'm a caregiver) however I try to keep up and read posts by others. My partner Mike had Stage 4a tonsil cancer on the LEFT. Had left neck dissection, chemo (3 cycles Cisplat) concurrent w/RT. He completed treatment on 17Jun2010. He's had 3 clean PET scans: Sep10, Feb11? and Jul11. Now that you're caught up, here's where we are today:
Oct11: Mike was experiencing some "nerve like pain" when he lifted his left arm-pain shot up through his eye but only when he moved his arm in a certain position. ENT/RO-see Neuro. Started him on Topamox (09Dec11) and the meds worked. No longer has the positional pain. Scar tissue on nerve? Neuro wanted MRI Head/spine-Negative (MRI done prior to PET on 23Jan)
Early December he went hunting in Iowa and he came home with "laryngitis". He thought it was because he was out in the "extreme" for 14+hours/day. The laryngitis is hanging around and his "tone" of his voice has changed slightly-higher pitch and its still present today.
Had a PET on 23Jan12. The RIGHT side of his larynx "lit up" (epiglottis area). Had appt w/ENT 24Jan12 who did his usual scope in the office. The LEFT vocal cord was not moving like the right (partially paralyzed) and nothing was seen on the RIGHT side of the larynx. Had another doc look at video of his scope exam and they compared the video to previous exams and concur-nothing on the RIGHT but the vocal cord on the LEFT is not moving like it once did. ENT wants to do a more in depth scope/endo under general anesthesia
Saw Med Onc on 27Jan and he wasn't concerned and thought it could be a "false positive" PET scan and didn't think the cancer would reoccur on the other side. Agreed w/ENT plan to scope in OR.
ENT did scope in OR w/another doc and they did not see anything abnormal on the RIGHT and nothing to biopsy. Did procedure w/another doc just to confirm. Still scratching heads....but a negative exam
There are a lot of "what if's".....
1) PET could have lit up because of movement
2) PET truly a false positive for unknown reasons
3) Vocal cord paralysis due to scar tissue on the RIGHT
Wants Mike to have a CT w/contrast on Friday. If this is negative, they are confident they have ruled out all they can and it's not a recurrence.
I know this is a long post but I'd appreciate hearing about your experiences w/positive PETs, any vocal cord paralysis 15months post treatment????
Thanks!!
Chris
Comments
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vocal cord
I have very similar problems. Right vocal cord paralyzed (13 years post treatment) and pain in arm, shoulder, and neck. I too took topomax with limited success. I was told these symptoms usually show up, if they are going to, around the seven year post treatment point. Thinking back I do not recall the vocal cord issue being attributed to scar tissue, I was told it is simply a side effect of radiation. I do know of several others who had the problem much sooner. Wish I had good news on a solution but so far there is nothing my doctors know of.
My ENT told me that it was possible that I would regain use of vocal cord within 12 months of the problem starting but that did not happen. Mine is permanent. I'm somewhat surprised they want to do surgery when the scope showed no growths, I think I would have another scan and see if it still lights up.0 -
PETGreend said:vocal cord
I have very similar problems. Right vocal cord paralyzed (13 years post treatment) and pain in arm, shoulder, and neck. I too took topomax with limited success. I was told these symptoms usually show up, if they are going to, around the seven year post treatment point. Thinking back I do not recall the vocal cord issue being attributed to scar tissue, I was told it is simply a side effect of radiation. I do know of several others who had the problem much sooner. Wish I had good news on a solution but so far there is nothing my doctors know of.
My ENT told me that it was possible that I would regain use of vocal cord within 12 months of the problem starting but that did not happen. Mine is permanent. I'm somewhat surprised they want to do surgery when the scope showed no growths, I think I would have another scan and see if it still lights up.
What a pain to not know what is going on. Both my Oncologist and surgeon said they don't have a lot of faith in PET scans, too many false positives and not very reliable. I guess it's the only test there is so what choice do they have but to order it.
Hopefully in time it will clear itself up and you both will forget about it.
Rooting for a "nothing".
Tommy0 -
believe it or not
it is most likely the problem was caused by exposure to dry weather. The larynx is dry after radiation for throat cancer. This is a permanent part of the problems we have, it actually has a medical term, laryngitis sicca. Exposure to dry air can trigger this kind of problem, which may be temporary or permanent. This can occur up to 15-20 years post treatment.
Now, that may explain the paralysis of the left vocal cord. But it wouldn't cause a positive PET scan. But if I understood you correctly. that pet scan lit up on the opposite side, and was disproved by a scope by the ENT.
There certainly can be other causes of unilateral cord paralysis, including radiation fibrosis, direct nerve injury from a radical neck dissection (which would have shown up right away after surgery), but it sounds like you guys are about to dodge a bullet'
Best regards to you
Pat0 -
PET Scanstommyodavey said:PET
What a pain to not know what is going on. Both my Oncologist and surgeon said they don't have a lot of faith in PET scans, too many false positives and not very reliable. I guess it's the only test there is so what choice do they have but to order it.
Hopefully in time it will clear itself up and you both will forget about it.
Rooting for a "nothing".
Tommy
I think that the PET Scans are actually pretty good if utilized for what they are...a tool in the aresenal...my ENT is my main man as for determining their results combined with his scopes and hands on exams.
Timng is pretty important, especially concerning H&N Cancer....too early and more than likely it'll result in false positives mainly do to residual damage from the radiation and tratment.
JG0 -
Thank you.....
Thank you all for taking the time to provide your feedback, comments and support. As you all know (and are all too familiar) this is a journey. I'm hopeful the CT on Friday will yield good results.
Although the PET can have false positives, they have always used PET's for Mike. I know not everyone is the same. Just weird how things can show up.
Thank you again!
xoxoxoxo
Chris0 -
False Positives
Hi Chris,
The first and second PET/CT scan I had post treatment (at 6 and 9 months) both lit up. They turned out to be false positives. After the initial PET/CT came back 'lit up', it was recommended to have an MRI. The MRI was clean which led them to believe it was probably inflammation that was showing up on the PET/CT. Eventually I did have a clean PET/CT at the 1 year mark.
I would ask to have an MRI, it may help to clarify the situation. Sure hope it turns out to be much ado over nothing. Cheers.
Jimbo0 -
Dang It Man....JimboJimbo55 said:False Positives
Hi Chris,
The first and second PET/CT scan I had post treatment (at 6 and 9 months) both lit up. They turned out to be false positives. After the initial PET/CT came back 'lit up', it was recommended to have an MRI. The MRI was clean which led them to believe it was probably inflammation that was showing up on the PET/CT. Eventually I did have a clean PET/CT at the 1 year mark.
I would ask to have an MRI, it may help to clarify the situation. Sure hope it turns out to be much ado over nothing. Cheers.
Jimbo
Just wanted to say I like the new photo....you are looking great.
Congrats,
John0 -
I would have to disagree.tommyodavey said:PET
What a pain to not know what is going on. Both my Oncologist and surgeon said they don't have a lot of faith in PET scans, too many false positives and not very reliable. I guess it's the only test there is so what choice do they have but to order it.
Hopefully in time it will clear itself up and you both will forget about it.
Rooting for a "nothing".
Tommy
I would have to disagree. Any test can have false positives but a PET is pretty good if used for the correct purpose. There are also CT and MRI scans so it is not the only diagnostic scan.0 -
Update....
Thanks to everyone for their support. Here is an update...
Mike had his CT larynx on Friday and also saw ENT (as a post op follow up from his procedure on 2/1). He reviewed the CT and did not see anything. He also spoke with the radiologist who concurred. While in the ENT office, they did the scope and saw nothing (again)-his left vocal cord remains semi-paralyzed. He had another ENT take a look as well-didn't see anything on the RIGHT side. The ENT did mention that his original path was "basoloid squamous cell" which is more aggressive and he would have "thought" that if the laryngitis was related to a recurrence that something would have shown/seen (bump/lump/node)by now since it's been 2 months since he presented with the laryngitis symptoms. Who knows...
Game plan: follow up visits to ENT now monthly and another PET in April. At this point, we feel that Mike has had all the diagnostic tests available to rule out a recurrence. So now we watch and wait and pray. But wait...there's more......
When we got home from the ENT, our H/N Cancer Navigator texted saying she got the report back from the CT and it read "Findings similar to what was displayed on PET are again noted- Thickening of the bilateral vocal cords and aryepiglottic folds. If not already performed, direct visualization recommended " .
Are the above "report findings" consistent with what the ENT told us? To me this doesn't sound like a negative CT but it might be negative for Mike because of his RT. Is thickening of the vocal cords expected post RT?
Since they have scoped him in the OR and in the office and have seen nothing...we stick with the game plan?
What a roller coaster...0 -
Sounds Good To Go...CLRRN said:Update....
Thanks to everyone for their support. Here is an update...
Mike had his CT larynx on Friday and also saw ENT (as a post op follow up from his procedure on 2/1). He reviewed the CT and did not see anything. He also spoke with the radiologist who concurred. While in the ENT office, they did the scope and saw nothing (again)-his left vocal cord remains semi-paralyzed. He had another ENT take a look as well-didn't see anything on the RIGHT side. The ENT did mention that his original path was "basoloid squamous cell" which is more aggressive and he would have "thought" that if the laryngitis was related to a recurrence that something would have shown/seen (bump/lump/node)by now since it's been 2 months since he presented with the laryngitis symptoms. Who knows...
Game plan: follow up visits to ENT now monthly and another PET in April. At this point, we feel that Mike has had all the diagnostic tests available to rule out a recurrence. So now we watch and wait and pray. But wait...there's more......
When we got home from the ENT, our H/N Cancer Navigator texted saying she got the report back from the CT and it read "Findings similar to what was displayed on PET are again noted- Thickening of the bilateral vocal cords and aryepiglottic folds. If not already performed, direct visualization recommended " .
Are the above "report findings" consistent with what the ENT told us? To me this doesn't sound like a negative CT but it might be negative for Mike because of his RT. Is thickening of the vocal cords expected post RT?
Since they have scoped him in the OR and in the office and have seen nothing...we stick with the game plan?
What a roller coaster...
It sounds like the text basically confirms what the others already told you. More than likely scarring and residual.
Sounds like a good proactive plan, with the monthly checks, anything that might pop up, should be observed fairly fast.
You guys are in my thoughts and prayers for continued good news and even better and uneventful reports.
John0 -
the scope is definitiveCLRRN said:Update....
Thanks to everyone for their support. Here is an update...
Mike had his CT larynx on Friday and also saw ENT (as a post op follow up from his procedure on 2/1). He reviewed the CT and did not see anything. He also spoke with the radiologist who concurred. While in the ENT office, they did the scope and saw nothing (again)-his left vocal cord remains semi-paralyzed. He had another ENT take a look as well-didn't see anything on the RIGHT side. The ENT did mention that his original path was "basoloid squamous cell" which is more aggressive and he would have "thought" that if the laryngitis was related to a recurrence that something would have shown/seen (bump/lump/node)by now since it's been 2 months since he presented with the laryngitis symptoms. Who knows...
Game plan: follow up visits to ENT now monthly and another PET in April. At this point, we feel that Mike has had all the diagnostic tests available to rule out a recurrence. So now we watch and wait and pray. But wait...there's more......
When we got home from the ENT, our H/N Cancer Navigator texted saying she got the report back from the CT and it read "Findings similar to what was displayed on PET are again noted- Thickening of the bilateral vocal cords and aryepiglottic folds. If not already performed, direct visualization recommended " .
Are the above "report findings" consistent with what the ENT told us? To me this doesn't sound like a negative CT but it might be negative for Mike because of his RT. Is thickening of the vocal cords expected post RT?
Since they have scoped him in the OR and in the office and have seen nothing...we stick with the game plan?
What a roller coaster...
The reports are consistent. Note that they only recommended "direct visualization." Sit tight. If there had been anything worth biopsy, they would have done it at the time of the scope. Stick with the plan--- it is a good one.
Pat0 -
Pesky PETSkiffin16 said:PET Scans
I think that the PET Scans are actually pretty good if utilized for what they are...a tool in the aresenal...my ENT is my main man as for determining their results combined with his scopes and hands on exams.
Timng is pretty important, especially concerning H&N Cancer....too early and more than likely it'll result in false positives mainly do to residual damage from the radiation and tratment.
JG
I had a PET scan 3 months after end of Tx. Doctor wasn't happy said he saw 6 possibly infected nodes. They gave me a selective neck dissection and it turned up nothing.
My local doctor said it was too early for PET and he would just examine me for lumps and bumps. I preferred the idea of a PET but it cost me unnecessary pain in the end.
I have another one in March and I almost don't want to do it.0 -
No positive PET scans but...
I was treated for base of tongue cancer back in 2004. I've had a PET scan just about every year without a positive. I just wanted to comment on the voice aspect. I hope I am wrong for Mike's sake. About a year and a half after my last treatment, I was driving down the street talking to my sister when my voice sort of "cracked". I laughed and said to my sister that it sounded like I was going through puberty again. Little did I know that was the beginning of my voice problems. Shortly after, I couldn't talk above a whisper. I eventually got my voice back but not the same as it used to be. It became very gravelly. Right now, I can't talk because of a surgery I had back in June but up until then, when I was talking on the phone, I had to do a lot of repeating myself when talking to people who didn't know me. You might want to prepare him for the possibility of it happening to him. Good luck and I hope I am wrong!0 -
Thanks....George_Baltimore said:No positive PET scans but...
I was treated for base of tongue cancer back in 2004. I've had a PET scan just about every year without a positive. I just wanted to comment on the voice aspect. I hope I am wrong for Mike's sake. About a year and a half after my last treatment, I was driving down the street talking to my sister when my voice sort of "cracked". I laughed and said to my sister that it sounded like I was going through puberty again. Little did I know that was the beginning of my voice problems. Shortly after, I couldn't talk above a whisper. I eventually got my voice back but not the same as it used to be. It became very gravelly. Right now, I can't talk because of a surgery I had back in June but up until then, when I was talking on the phone, I had to do a lot of repeating myself when talking to people who didn't know me. You might want to prepare him for the possibility of it happening to him. Good luck and I hope I am wrong!
Thanks...his voice sounds like he is in puberty too but changes tones. He has a difficult time on the phone and some think they are talking to me when they call and that is hard for him. They did tell him his voice may not come back but hopeful it will. Either way, Mike's is ok with and as he would say "every day you're on this side of the dirt is a good day" That's his sarcastic humor and what gets us both through this journey.
George...did you get treated in Baltimore? We live on the Eastern Shore of MD. Mike got treated at Anne Arundel Med Ctr (Annapolis)0 -
Amen to That...CLRRN said:Thanks....
Thanks...his voice sounds like he is in puberty too but changes tones. He has a difficult time on the phone and some think they are talking to me when they call and that is hard for him. They did tell him his voice may not come back but hopeful it will. Either way, Mike's is ok with and as he would say "every day you're on this side of the dirt is a good day" That's his sarcastic humor and what gets us both through this journey.
George...did you get treated in Baltimore? We live on the Eastern Shore of MD. Mike got treated at Anne Arundel Med Ctr (Annapolis)
"every day you're on this side of the dirt is a good day"0 -
Update to "Never a dull moment"
Mike saw the ENT yesterday and they did the examination via scope and all was clear-nothing abnormal visualized and no lumps/bumps felt on his neck. Although his left vocal cord remains paralyzed the ENT saw a little more movement(vibration) than what was seen in Jan/Feb. Either way, Mike still has this "laryngitis" but feels ok and weight is stable.
If there is anything "bad" that caused the positive PET or this laryngitis it hasn't shown it's ugly self. The ENT said that if these issues were related to a recurrence, he would have thought some kind of symptom would have surfaced. At this point he's contributing the laryngitis to scar tissue. We return in a month and another PET end of April/early May.
So at this point...status quo.
As always, thanks for all the support and I would be lost without this board.
Chris0 -
Ugly SelfCLRRN said:Update to "Never a dull moment"
Mike saw the ENT yesterday and they did the examination via scope and all was clear-nothing abnormal visualized and no lumps/bumps felt on his neck. Although his left vocal cord remains paralyzed the ENT saw a little more movement(vibration) than what was seen in Jan/Feb. Either way, Mike still has this "laryngitis" but feels ok and weight is stable.
If there is anything "bad" that caused the positive PET or this laryngitis it hasn't shown it's ugly self. The ENT said that if these issues were related to a recurrence, he would have thought some kind of symptom would have surfaced. At this point he's contributing the laryngitis to scar tissue. We return in a month and another PET end of April/early May.
So at this point...status quo.
As always, thanks for all the support and I would be lost without this board.
Chris
Hey Chris, I'm sorry to hear about the laryngitis, and hope that there continues to be no ugly self to be revealed. The after effects of treatment always keep us hopping, and are never fun to deal with.
PATRICK0 -
TreatmentsCLRRN said:Thanks....
Thanks...his voice sounds like he is in puberty too but changes tones. He has a difficult time on the phone and some think they are talking to me when they call and that is hard for him. They did tell him his voice may not come back but hopeful it will. Either way, Mike's is ok with and as he would say "every day you're on this side of the dirt is a good day" That's his sarcastic humor and what gets us both through this journey.
George...did you get treated in Baltimore? We live on the Eastern Shore of MD. Mike got treated at Anne Arundel Med Ctr (Annapolis)
Hi Chris, I had my chemo done at Good Samaritan in Baltimore by Dr. Chang who, at the time, was also the Chief of Oncology at St. Joseph's. The radiation was also done at Good Sam. My mandible reconstruction last year, was done by surgeons at the Milton J. Dance Center at GBMC which is somehow affiliated with Johns Hopkins.
BTW, I'm surprised you went to Annapolis for treatment. According to an old friend of mine, her T-shirt said "There is no life west of the Chesapeake." LOL0
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