laryngectomy My New Diagnosis - Scared but Also OK

HobbsDoggy

Some of you know I have been struggling with this for a while.  I am at the Cleveland Clinic.  They are fairly sure I have stage 1 and at worst stage !! cancer of the voice box.  Since I had radiation before (neck unknown primary) and even though it was 8 years ago they are very reluctant to do radiation again.  The risks are too high for life style changes that will be bad to very bad (permanent feeding tube and permanent tracheotomy tube, etc.)  They are going with a total voice box removal and reconstructive surgery.  Given my age and physical condition they feel I can have a fairly normal life and a good possibility of getting rid of the cancer.  The recurrence rate is not quite as good in larynx cancer, but for stage 1 or stage II not bad as long as other factors are good, which in my case seem to be.

Scared you bet, like really scared.  I am going to go with Cleveland as they have the expertise and the skill and they really seem to care, but open to ideas.

Anyone have thoughts on this cancer and any experience?  I am not asking for false hope, but a bit of hope would be nice.

Logan51

HD

Well, one would think that when they operate they will only remove what is necessary. "Fairly sure," makes it sound like they are not certain, and they should be sure about it before doing such an Op. with the ramifications. One would think once they open up your throat they should be able to see a discolored area(s), or a PET/CT would show them.

Actor Val Kilmer had the Op., but he had a big lump and was bleeding.

Good luck.

 

wbcgaruss

HobbsDoggy I Have no Experience

With your exact kind of cancer but I am just responding to give you support. It sounds like your medical team is fully aware of your medical history and have narrowed your treatment down to fit your situation. I assume you trust in your team so just don't worry excessively. I know we worry but I always try to limit it as no amount of worry will change anything. Trust in your medical team, trust in God, pray a lot and I pray you will get a great outcome-Take Care-God Bless

big G

wbcgaruss said:

HobbsDoggy I Have no Experience

With your exact kind of cancer but I am just responding to give you support. It sounds like your medical team is fully aware of your medical history and have narrowed your treatment down to fit your situation. I assume you trust in your team so just don't worry excessively. I know we worry but I always try to limit it as no amount of worry will change anything. Trust in your medical team, trust in God, pray a lot and I pray you will get a great outcome-Take Care-God Bless

voice box

HobbsDoggy, I along with Russ and Dave don't have knowledge of the cancer but would like to share an experience with you. On the 3rd day after my neck dissection to remove nodes on both sides of the neck I returned to the surgeon to have the tube drains removed from my neck. There was a man in front of me turned to me and said I went though something similar years ago. He reached up to his neck with one hand pressed against his neck while speaking to me and said I had my voice box removed because of cancer and that was 12 yrs. ago. I said you look great. He had a voice aid or amplifier that he would press against his neck to speak and was very understandable. Trust in your team, god, and family and you will get through this also. There is always hope.

HobbsDoggy

Thanks and Still Workin on It

Guys - Thanks for your observations and thoughts.  I go to the University of Michigan tomorrow to get their views.  I am still getting some conflicting information.  I need to get things cleared up.  The good news it appears that I can beat the cancer and have a good chance at a return to my former life.  This is my second go around as you may know.  It don't get easier.  But I am greartful for a second chance no matter how scary, and it is terrifiing.  I am still not clear why I need a total voice box removal as its in early stages.  Of all the questions that basic one on my list I passed over.  Got caught up in the details.

Big G very great to hear the story about your friend.  The surgical reconstruction they do today I think means that I could speak without a mechinal aid which would be nice.

All of you are great and a big help.  I will report soon on what the U of M says.  Thank you so much!!!

PipLily

HobbsDoggy said:

Thanks and Still Workin on It

Guys - Thanks for your observations and thoughts.  I go to the University of Michigan tomorrow to get their views.  I am still getting some conflicting information.  I need to get things cleared up.  The good news it appears that I can beat the cancer and have a good chance at a return to my former life.  This is my second go around as you may know.  It don't get easier.  But I am greartful for a second chance no matter how scary, and it is terrifiing.  I am still not clear why I need a total voice box removal as its in early stages.  Of all the questions that basic one on my list I passed over.  Got caught up in the details.

Big G very great to hear the story about your friend.  The surgical reconstruction they do today I think means that I could speak without a mechinal aid which would be nice.

All of you are great and a big help.  I will report soon on what the U of M says.  Thank you so much!!!

Thinking of you!

Any new news? Hoping your appointment at U of M was good and informative!

Take care-

Elizabeth

HobbsDoggy

Good - Then Maybe Bad

It is a very scary ride.  The good news they still think they can get the cancer and that I can return to a normal life.  The best way to beat this cancer is surgery to remove the voice box.  The also good news is that I should be able to eat fairly normally and will be able to talk at a reasonable level and connucate well enough.  I am very greatful for that.  I am very impressed with both Cleveland Clinic and the Univeristy of Michingan.  

One thing happened tonight that really, really scared me.  I have worked through a month and a half of this and have almost gained acceptance.  The doctor called me and said he wants a new MIR as there is a snall concern that the tumor may have attached itself to my spine, its on the back of my voice box.  If that is the case then surgery is not a opition and there is little they can do besides make me confortable as possible.  He thinks based on everything that is is very unlikely, but he wants to make sure.  This is the first time this has come up.  No one ever said this as a posablity before.  I am totlly deflated and feel like I am back at square one.  Another night of sadness just when I had made peace with my situation.  I know all of you have gone though these things before, but what a blow when a good conclusion was so close.  i am hoping to have the MRI tomorrow if they can get me in, its shows no spine involved and they move my surgery up so the tumor has no chance to get there and the good conclusion still happens.  I need you guys now.

Thanks

PipLily

HobbsDoggy said:

Good - Then Maybe Bad

It is a very scary ride.  The good news they still think they can get the cancer and that I can return to a normal life.  The best way to beat this cancer is surgery to remove the voice box.  The also good news is that I should be able to eat fairly normally and will be able to talk at a reasonable level and connucate well enough.  I am very greatful for that.  I am very impressed with both Cleveland Clinic and the Univeristy of Michingan.  

One thing happened tonight that really, really scared me.  I have worked through a month and a half of this and have almost gained acceptance.  The doctor called me and said he wants a new MIR as there is a snall concern that the tumor may have attached itself to my spine, its on the back of my voice box.  If that is the case then surgery is not a opition and there is little they can do besides make me confortable as possible.  He thinks based on everything that is is very unlikely, but he wants to make sure.  This is the first time this has come up.  No one ever said this as a posablity before.  I am totlly deflated and feel like I am back at square one.  Another night of sadness just when I had made peace with my situation.  I know all of you have gone though these things before, but what a blow when a good conclusion was so close.  i am hoping to have the MRI tomorrow if they can get me in, its shows no spine involved and they move my surgery up so the tumor has no chance to get there and the good conclusion still happens.  I need you guys now.

Thanks

Sounds like they’re just

Sounds like they’re just taking every precaution to be thorough, but that doesn’t help your fear. I’m sure your mind is racing. So sorry you have this added to things after being hopeful. Will be thinking of you, and whispering prayers for you. 

wbcgaruss

OK That Wasn't Expected

And just when you had gotten a good plan and were comfortable. Well, I'm with PipLily it is probably one last thing to check out and be completely thorough. But I know it is certainly unsettling as it unsettled me when I read it and I feel for you and along with you and now it is on your mind till you get the clean scan results. Do the best you can to think positive and be strong and I will be putting you on my prayer list for peace of heart and especially what the docs call an (Unremarkable Scan) as in Nothing to See Here Lets Move On-Take Care-HobbsDoggy-God Bless-Russ

Logan51

HD

If the Dr. is right, then the C must be on the side- because the esophagus is between the voice box and spine! That does not seem likely, unless the tumor is huge.

Like Russ said, keep it in the positive. The Dr., for some reason, might be just making sure. Thoughts and Prayers are with you.

ERomanO

A "small concern" and "very unlikely"

It's probably best to keep those words in mind until your doctors have reviewed your MRI and can confidently draw a conclusion.  They want to be sure before moving ahead with the surgery.  I know that's easy to say from where I'm sitting, but all of us, regardless of how many or few challenges we face from our treatments, know that things can change at any time.  Anyway, here's hopes and prayers for a totally uneventful MRI and successful surgery.  Is the surgery being done at UofM or CC?  Just curious.

HobbsDoggy

Chatted With CC

I am still struggling with where to have surgery done, both places are very good, but CC has the edge a bit I think, any thoughts?

I did talk to the doctor at CC and he thinks the docs are just being super cautious and that it is very unlikely that the tumor has invaded the spine.  I know doctors are doing their very best and they are all being as kind as they can.  I do wonder if at times they understand what it is like on the other side of the desk.  Mostly I think they do.  

I am trying to find things to keep busy.  I am sure you all know when you reach accpetance of the procdures you are going to have and the likely outcome and new lifestlye.  It is hard to get to that stage.  I was there, I did not get there easily, but did make it.  Then to have that thrown at me at the last second was a major shock.  A new round of accptance is needed.  You all went through it and so can I.  Thanks so much.

ERomanO

The "Clinic"

I chose CC over my local doc because the doc at CC said "No surgery required", and he is a surgeon.  The local surgeon wanted to do a modified radical neck dissection and I wasn't to thrilled about that.  Plus the folks at CC made me feel much more at ease.  Aside from that, all I know is that CC has lots of docs at their Head & Neck Institute that specialize in the treatment of H&N diseases, and nothing but them.  I think it would be tough to choose one hospital over another based on having "the edge". I had a neighbor that found out he had esophageal cancer.  The local doc(s) told him there was nothing they could do and that he should get his affairs in order.  He went to CC and talked to a surgeon there that said he had success treating his type of cancer.  He had the surgery (in his case the doc was able to spare his voice box) and went on to live at least 10 years.  It may have been closer to 15.  I have another friend that has been a singer all his life and suddenly lost most of his voice.  I think it was the same situation with the docs here... that nothing could be done.  He finally went to CC and they repaired it good as new.

Ultimately you have to decide who you are most comfortable with.  Best of luck to you!

HobbsDoggy

Thanks

You are right CC is one of the best in the world.  Besides they are kind and treat you like you are the most important person in the system.  I am going to choose the U of M becuse of logistics, my wife is older and cannot take the drive to CC.  If my situation turns out to be more complex than it appears I will head for CC no question.  If anyone has any doubts about CC they can put them aside.  The U of M is great also.  I am hoping to have surgery next week and hoping they can get all the cancer the first time and won't need any mop up radiation, but will do whatever it takes.

Scared out of my mind, but have reached acceptance and reached I want to do this and have trust in my doctor team and want to go forward.  I have faith this will work and it is more than worth the fight.  

ERomanO

The way a doctor and staff

The way a doctor and staff make you feel is very important, but so are logistics.  I could've received treatment locally and who knows, it may not have been any different than what I received ar CC, and I would've been commuting 15-20 minutes for treatments instead of 60-70 minutes.  Trust me, when all things are equal I will always choose convenience.  But the local doc and his nurses were all kind of "high strung", and given the fact that I was already on edge they made me feel even more uneasy.  So for me it was worth the longer commute.  It sounds like you have a good team at U of M, so given your logistical needs I think you made the right choice.

We'll all be praying and rooting for your success!