Cousin

Kent Cass

He's not one of us, but thought you might be interested in my Cousin's story. About my age (56), he was a heavy drinker and smoker. Couple years ago developed problems swallowing. Dr. kept telling him it was acid reflux, until last fall, when a tumor was found. Getting the correct info from him has been difficult, but it seems the problem is near his larynx, but had spread to numerous H&N areas via the lymph system.

1- 3 chemos over 9 weeks, with Cisplatin/FU-5. Tumor developed on the side of his head above his ear during this time, and was surgically removed.

2- then, typical rads of 35 over 7 weeks, while getting secondary chemo, and including a hospital stay with serious illness, ending in January/11.

3- initial CT showed a problem still near his larynx a couple weeks ago.

4- just had an Onco follow-up, and they're sending him some 100 miles to Rush Medical in Chicago next Tuesday for evaluation, and hopes of surgical removal of the tumor without larynx damage.

Told his Sister about the robotic surgery possibility, which I hope Rush has, and the Photon radiation. Thing is- here is a case that likely wasn't diagnosed as soon as it could have been, and now the C&R described above was not able to ace his C. Any comments would be welcome. He doesn't have insurance, other than what the State pays, so his options may be limited.

kcass

And that hospital in my Avatar is the old part of Rush-Pesbyterian-St.Luke's in Chicago, the place I got to know as a weewittle lad, and where my Cousin is now being sent to.

Skiffin16

Thoughts
Nothing that I can add, but willing to share my Thoughts and Prayers for you, him and family....

John

Glenna M

Late diagnosis
I think a lot of people could be diagnosed sooner but most doctors look at complaints of ear pain and throat pain as something that will be cured by antibiotics. My situation was similar. Went to my PCP in December '08, had almost completely lost my voice, had constant ear pain and my throat hurt when I swallowed. Was prescribed the usual antibiotics and told to come back if it didn't help. Needless to say the antibiotics didn't do a thing for me. Called the doctor back and he prescribed another, more expensive, antibiotic. I was so disgusted with him by then that I didn't bother to go back for a third round, he never ordered any tests, just got out his prescription pad each time. I didn't have health insurance at the time and could not afford to keep paying full price for each office visit and useless prescriptions.

Finally couldn't deal with the constant pain and changed doctors, he immediately sent me for a chest x-ray and then a CT scan...the rest is history.

If the doctors would spend more than 10 minutes with their patients I think a lot of H&N cancers could be diagnosed earlier.

I agree that his options are more limited because he doesn't have private health insurance, I don't either, just Medicaid and I know my doctors all try to keep the expenses to a minimum without jeopardizing my health.

Will be praying for great success for your cousin.
Glenna

Hondo

Glenna M said:

Late diagnosis
I think a lot of people could be diagnosed sooner but most doctors look at complaints of ear pain and throat pain as something that will be cured by antibiotics. My situation was similar. Went to my PCP in December '08, had almost completely lost my voice, had constant ear pain and my throat hurt when I swallowed. Was prescribed the usual antibiotics and told to come back if it didn't help. Needless to say the antibiotics didn't do a thing for me. Called the doctor back and he prescribed another, more expensive, antibiotic. I was so disgusted with him by then that I didn't bother to go back for a third round, he never ordered any tests, just got out his prescription pad each time. I didn't have health insurance at the time and could not afford to keep paying full price for each office visit and useless prescriptions.

Finally couldn't deal with the constant pain and changed doctors, he immediately sent me for a chest x-ray and then a CT scan...the rest is history.

If the doctors would spend more than 10 minutes with their patients I think a lot of H&N cancers could be diagnosed earlier.

I agree that his options are more limited because he doesn't have private health insurance, I don't either, just Medicaid and I know my doctors all try to keep the expenses to a minimum without jeopardizing my health.

Will be praying for great success for your cousin.
Glenna

Hi Kent

Sorry to hear this about your Cousin, it is hard to find a good doctor these days that will follow up on a complaint. Like Glenna said they push off antibiotics on us and tell us its just an infection.

I had seen two ENT’s doctors before the third one found I had NPC Cancer, the others were only interested in fixing my nose that I broke when I was a kid, it is so easy to get a misdiagnosis these days.

Will keep your Cousin on my prayer list
Hondo

ratface

Hondo said:

Hi Kent

Sorry to hear this about your Cousin, it is hard to find a good doctor these days that will follow up on a complaint. Like Glenna said they push off antibiotics on us and tell us its just an infection.

I had seen two ENT’s doctors before the third one found I had NPC Cancer, the others were only interested in fixing my nose that I broke when I was a kid, it is so easy to get a misdiagnosis these days.

Will keep your Cousin on my prayer list
Hondo

Rush has a top surgeon on staff
Sorry to hear about your cousin but RUSH is a top notch place because of a very well known and highly regarded surgeon who specializes in head and neck. he will be in good hands.

Kent Cass

ratface said:

Rush has a top surgeon on staff
Sorry to hear about your cousin but RUSH is a top notch place because of a very well known and highly regarded surgeon who specializes in head and neck. he will be in good hands.

Ratface
Great to hear you say that, Ratface, as I am currently unaware of anyone in C at Rush, other than Caldarelli is still head of the ENT Dept. He took-over when my Dr., Friedberg, retired. Figured they'd still have top Drs., but it is great to hear you say you've heard of a H&N Surgeon, there. Will pass the word to Relatives. Will likely be grateful to hear of. Thank you.

kcass

ratface

Kent Cass said:

Ratface
Great to hear you say that, Ratface, as I am currently unaware of anyone in C at Rush, other than Caldarelli is still head of the ENT Dept. He took-over when my Dr., Friedberg, retired. Figured they'd still have top Drs., but it is great to hear you say you've heard of a H&N Surgeon, there. Will pass the word to Relatives. Will likely be grateful to hear of. Thank you.

kcass

Far as I know
Dr. Guy Petrocelli is their top guy, Always hear great praise about him. He came from Loyola's Cardinal Bernandine Center. Your Cousin would be fine at either of these two or University of Chicago or Northwestern. Chicago is a cold horrible place sometimes but it does have world class hospitals. That corridor where Rush is located is reported to be the biggest hospital complex in the world. I think there are nine hospitals located there.

Kent Cass

ratface said:

Far as I know
Dr. Guy Petrocelli is their top guy, Always hear great praise about him. He came from Loyola's Cardinal Bernandine Center. Your Cousin would be fine at either of these two or University of Chicago or Northwestern. Chicago is a cold horrible place sometimes but it does have world class hospitals. That corridor where Rush is located is reported to be the biggest hospital complex in the world. I think there are nine hospitals located there.

Update
Petrocelli is the Dr. he saw on Tuesday. Chicago did a quickie PS/CT and, it seems, only see potential problems in his mouth, for which a 4/8 biopsy has been scheduled. Was in great spirits, as he had been lead to think his throat problems involved a growth around his larynx. Seems to me he might just be struggling with the post-treatment side-effects, and is interpretting what he's experiencing as problems, rather than the typical side-effects we all know of. Will know more after the biopsy, but it would surprise me if that is anything other than a false-Positive.

And, Ratface- did John's Google map thing on the Rush Medical area. That 7-block area is something else. Maybe more than 9 hospitals, with Rush-Presbyterian-St.Luke's, Rush's buildings, Cook County and the Stroger hospitals, and the VA, and the U of Illinois buildings. Rush, itself, has over 8,000 employees. Major impressive. And, thanks again.

kcass

Kent Cass

Kent Cass said:

Update
Petrocelli is the Dr. he saw on Tuesday. Chicago did a quickie PS/CT and, it seems, only see potential problems in his mouth, for which a 4/8 biopsy has been scheduled. Was in great spirits, as he had been lead to think his throat problems involved a growth around his larynx. Seems to me he might just be struggling with the post-treatment side-effects, and is interpretting what he's experiencing as problems, rather than the typical side-effects we all know of. Will know more after the biopsy, but it would surprise me if that is anything other than a false-Positive.

And, Ratface- did John's Google map thing on the Rush Medical area. That 7-block area is something else. Maybe more than 9 hospitals, with Rush-Presbyterian-St.Luke's, Rush's buildings, Cook County and the Stroger hospitals, and the VA, and the U of Illinois buildings. Rush, itself, has over 8,000 employees. Major impressive. And, thanks again.

kcass

Another Update
Any of you have your Epiglottis removed? Or have laser surgery to it? And any who have had both the Epiglottis, false vocal cord and tongue involved in an Op?

I have learned that his C apparently still shows on the back of his tongue, perhaps palate, and his Epiglottis. And, this is after his very-recent C&R! That's the scoop, for now. Obviously, we are all hoping the 4/8 biopsy in Chicago finds the C in those spots are dead C. Says he can see the "black" area on the Scan where his Epiglottis is. This thing is starting to hit home with him as to the potential severity of it. Any suggestions on what I could tell him to ease his anxiety?

kcass

sweetblood22

Kent Cass said:

Another Update
Any of you have your Epiglottis removed? Or have laser surgery to it? And any who have had both the Epiglottis, false vocal cord and tongue involved in an Op?

I have learned that his C apparently still shows on the back of his tongue, perhaps palate, and his Epiglottis. And, this is after his very-recent C&R! That's the scoop, for now. Obviously, we are all hoping the 4/8 biopsy in Chicago finds the C in those spots are dead C. Says he can see the "black" area on the Scan where his Epiglottis is. This thing is starting to hit home with him as to the potential severity of it. Any suggestions on what I could tell him to ease his anxiety?

kcass

My cousins wife had hnc and
My cousins wife had hnc and she had her epiglotis removed. She is doing ok now, as far as I know. I don't remember what type of surgery she had though. I know she had chemo and rads. She can eat ok now. She is back to work. I bet she is four years out or more now??? I think she had lymph node involment. She was treated at Sloan NYC.

Kent Cass

sweetblood22 said:

My cousins wife had hnc and
My cousins wife had hnc and she had her epiglotis removed. She is doing ok now, as far as I know. I don't remember what type of surgery she had though. I know she had chemo and rads. She can eat ok now. She is back to work. I bet she is four years out or more now??? I think she had lymph node involment. She was treated at Sloan NYC.

Biopsy
Heard last night he got the biopsy results from Rush- C is still in the upper part of his voice box, etc. So, they are talking about removal of the voice box and "back" of his tongue, which they will replace with a graft from his arm. And questions arise:

1)Any idea on the length of this Op? One of the 10-plus hour Ops?
2)Trache for life?
3)Will he be able to get one of those artificial voice boxes?


Needless to say, he is kinda shaken by this, having recently finished with the C&R, and had hoped all was good. Any info for what lies ahead of him is welcome, including PMs with the details.

Thank you

kcass

Glenna M

Kent Cass said:

Biopsy
Heard last night he got the biopsy results from Rush- C is still in the upper part of his voice box, etc. So, they are talking about removal of the voice box and "back" of his tongue, which they will replace with a graft from his arm. And questions arise:

1)Any idea on the length of this Op? One of the 10-plus hour Ops?
2)Trache for life?
3)Will he be able to get one of those artificial voice boxes?


Needless to say, he is kinda shaken by this, having recently finished with the C&R, and had hoped all was good. Any info for what lies ahead of him is welcome, including PMs with the details.

Thank you

kcass

Wish I could help...
I don't have the answers to any of your questions, I just wanted to let you know how sorry I am that your cousin didn't receive better news.

I will continue to pray for him,
Glenna

Pam M

Kent Cass said:

Biopsy
Heard last night he got the biopsy results from Rush- C is still in the upper part of his voice box, etc. So, they are talking about removal of the voice box and "back" of his tongue, which they will replace with a graft from his arm. And questions arise:

1)Any idea on the length of this Op? One of the 10-plus hour Ops?
2)Trache for life?
3)Will he be able to get one of those artificial voice boxes?


Needless to say, he is kinda shaken by this, having recently finished with the C&R, and had hoped all was good. Any info for what lies ahead of him is welcome, including PMs with the details.

Thank you

kcass

I'm Like Glenna
No info to offer - just well wishes.

Pam M

Kent Cass said:

Biopsy
Heard last night he got the biopsy results from Rush- C is still in the upper part of his voice box, etc. So, they are talking about removal of the voice box and "back" of his tongue, which they will replace with a graft from his arm. And questions arise:

1)Any idea on the length of this Op? One of the 10-plus hour Ops?
2)Trache for life?
3)Will he be able to get one of those artificial voice boxes?


Needless to say, he is kinda shaken by this, having recently finished with the C&R, and had hoped all was good. Any info for what lies ahead of him is welcome, including PMs with the details.

Thank you

kcass

I'm Like Glenna
No info to offer - just well wishes.

Kent Cass

Pam M said:

I'm Like Glenna
No info to offer - just well wishes.

Surgery today
Cousin had his big Op today in Peoria to remove his voice box, remodel the area above it, and replace the base of his tongue. No updates on how it went, yet, other than a Nurse gave family updates every couple hours for awhile that all was going good.

Anybody able to give me some helpful insight on what he needs to be wary of, or expect? Anything will be helpful. Also, what I might tell his immediate family on what to expect, post-Op, on how long he'll be in the hospital, and his rehab?

thanks

kcass

Hondo

Kent Cass said:

Surgery today
Cousin had his big Op today in Peoria to remove his voice box, remodel the area above it, and replace the base of his tongue. No updates on how it went, yet, other than a Nurse gave family updates every couple hours for awhile that all was going good.

Anybody able to give me some helpful insight on what he needs to be wary of, or expect? Anything will be helpful. Also, what I might tell his immediate family on what to expect, post-Op, on how long he'll be in the hospital, and his rehab?

thanks

kcass

Hi Kent
Thanks for the up-date and please let us know something as soon as you hear.

Keeping him in prayer
Hondo

Skiffin16

Kent Cass said:

Surgery today
Cousin had his big Op today in Peoria to remove his voice box, remodel the area above it, and replace the base of his tongue. No updates on how it went, yet, other than a Nurse gave family updates every couple hours for awhile that all was going good.

Anybody able to give me some helpful insight on what he needs to be wary of, or expect? Anything will be helpful. Also, what I might tell his immediate family on what to expect, post-Op, on how long he'll be in the hospital, and his rehab?

thanks

kcass

Thoughts & Prayers
Sorry I can't offer any advice, but I can offer you and your family my prayers....

Thoughts & Prayers,
John

luv2cut1

Kent Cass said:

Surgery today
Cousin had his big Op today in Peoria to remove his voice box, remodel the area above it, and replace the base of his tongue. No updates on how it went, yet, other than a Nurse gave family updates every couple hours for awhile that all was going good.

Anybody able to give me some helpful insight on what he needs to be wary of, or expect? Anything will be helpful. Also, what I might tell his immediate family on what to expect, post-Op, on how long he'll be in the hospital, and his rehab?

thanks

kcass

Thoughts and prayers
Are with you, your cousin and all of his loved ones. Please keep us updated.

Myka

Kent Cass

luv2cut1 said:

Thoughts and prayers
Are with you, your cousin and all of his loved ones. Please keep us updated.

Myka

Update
8 1/2-hour Op, which took his voice box and lymph system on both sides of his neck, but only a small piece of the tongue- what I was just told. Was coherent in recovery, and gave the Dr. a thumbs-up when told the Op was a success.

Did not get one of those artificial voice boxes installed, but not sure why. Does that only happen later after the swelling has gone down?

thanks for your caring

kcass

luv2cut1

Kent Cass said:

Update
8 1/2-hour Op, which took his voice box and lymph system on both sides of his neck, but only a small piece of the tongue- what I was just told. Was coherent in recovery, and gave the Dr. a thumbs-up when told the Op was a success.

Did not get one of those artificial voice boxes installed, but not sure why. Does that only happen later after the swelling has gone down?

thanks for your caring

kcass

Thanks for the update
Glad the surgery went well. Im sure he has a long road ahead but everyone on this board will be pulling for him. Please continue to keep us posted.

Myka

Kent Cass

luv2cut1 said:

Thanks for the update
Glad the surgery went well. Im sure he has a long road ahead but everyone on this board will be pulling for him. Please continue to keep us posted.

Myka

Back home
Turns-out my Cousin spent close to 2 weeks in the Peoria hospital where he had the surgery, then was transferred to a Nursing Home for another 2-week stay. In total, he was gone for right about a month, and they're still working on trying to find a way to give him a voice. There is something for him to put in his trache hole that is supposed to give him some sort of a voice, but it isn't working yet. The current thought is that continued swelling is the problem.

All told, for those of us who are vets of H&N C wars, my Cousin handled the Op pretty well, but appears to have made a mess of the post-Op time in the hospital. Not sure what the specifics are, but his "attitude" got him ushered out of the hospital without any goodbyes by the Nursing staff. He was able to sit in a chair the day after the Op, and walk down the hall on the following day- both of which impressed me. However, it appears his brain went into "self-pity party" mode, and it turned a lotta people against him. Could be a lesson to be learned in that.

kcass