Swiss Cheese Trachea?

LumpinmyThroat

Happy Monday, Folks!

Hubby started his IMRT today in Houston.  1 down, 32 to go.  He met with the oncologist who explained the risks and brought something up I was curious about.  If the trachea has been comsumed by cancer to the extent that a hole will be left when the cancer is killed, where does that leave us?  Does the tracheal tissue heal?

patricke

TRACHEAL TISSUE

I don't think that rad damaged trach tissue heals so well, as I think that most tissues damaged by rads don't heal so well.  That being said, as just my opinion, I believe that  it would be good to chat with the docs about what the optons are if a hole is formed as a result of the radiation treatment.  Hopefully his trachea will come thru the treatment hole free. 

PATRICK

CivilMatt

no holes

LT,

I agree rads leave their mark.

The oncologist made the remark about a hole?  Let’s hope that doesn’t happen.

No holes for  me, just a different, less flexible throat.

Matt

wmc

Hole in Trach

I would want answers on that from the doctor as well.

I never had any radation or chemo, but I do have a TEP which is a 7.5mm hole for my prosthesis,[so I can talk]. Now if the prosthesis were to come out, the hole will close up in under six hours, my doctor told me. I have four hours max to get to the hospital. I have to have a plug at home so I can plug the hole before it closes. I don't know if that would apply if radation was envolved.

I know the lungs will rebuild themself if you get a small hole in them. Mine got a hole and colapsed twice and repaired them self. Well they had to be kept inflated by the hospital, but they will rebuild.

Hope this might help some.

Bill

LumpinmyThroat

Holes

Thanks for the info!  That's crazy how fast the trach hole will close with the plug out!!!!

Unfortunately, I cannot be in Houston for his appointments, so I have to rely on hubby to recapitulate the information from the oncologist to me.  He latches onto anything negative and that's all I get to hear.  I have to take what he tells me as just general information the oncologist was giving him when explaining all of the possible risks and not get myself stirred up about it.  

I'll give you an example of why I believe this: When we were signing the consent forms for the radiation last week, the nurse said she was just going to put "lung cancer" on the thorax consent form for simplification purposes.  When we walked out of the appointment he started getting upset about "having lung cancer now".  I explained that the nurse said she was just writing that on the consent to keep it simple (right in front of him) and he questioned me like he heard an entirely different conversation.  Being the actual patient must be so difficult and it really impacts what info he absorbs from what is actually said.

My gut tells me he ASKED the oncologist about holes and that's what brought such a discussion up in the first place.  I was present for a previous discussion about holes he brought up with another H&N oncologist at MDA (Dr. Fuller).  Fuller said he thought the trachea would be ok... so that's what I'm going to latch onto and believe.

The oncologist also told him he would have a CT in two weeks to check the trachea and make sure it's holding up to treatment.  He gave hubby a 5%-10% risk of death from treatment.  I think those are some fanstastic odds personally...  

 

hwt

LumpinmyThroat said:

Holes

Thanks for the info!  That's crazy how fast the trach hole will close with the plug out!!!!

Unfortunately, I cannot be in Houston for his appointments, so I have to rely on hubby to recapitulate the information from the oncologist to me.  He latches onto anything negative and that's all I get to hear.  I have to take what he tells me as just general information the oncologist was giving him when explaining all of the possible risks and not get myself stirred up about it.  

I'll give you an example of why I believe this: When we were signing the consent forms for the radiation last week, the nurse said she was just going to put "lung cancer" on the thorax consent form for simplification purposes.  When we walked out of the appointment he started getting upset about "having lung cancer now".  I explained that the nurse said she was just writing that on the consent to keep it simple (right in front of him) and he questioned me like he heard an entirely different conversation.  Being the actual patient must be so difficult and it really impacts what info he absorbs from what is actually said.

My gut tells me he ASKED the oncologist about holes and that's what brought such a discussion up in the first place.  I was present for a previous discussion about holes he brought up with another H&N oncologist at MDA (Dr. Fuller).  Fuller said he thought the trachea would be ok... so that's what I'm going to latch onto and believe.

The oncologist also told him he would have a CT in two weeks to check the trachea and make sure it's holding up to treatment.  He gave hubby a 5%-10% risk of death from treatment.  I think those are some fanstastic odds personally...  

 

Holes

90-95% chance of survival...pretty good odds! Sorry, I can't help with the question about the trachea, mine was removed before I had radiation. I'm sure MDA deals with this all the time and will keep a close watch.

I'm on your husband's side, the nurse should not have shortcut the system and wrote lung cancer on a consent form.  

Be patient with your husband, he is surely scared right now. Maybe suggest he take a notepad when he meets the doctors in addition to a list of questions he might have. You can help him comprise the list of questions from the concerns he tells you about. When he mentions a negative, have him get the pad out and write the question down right then. That might allow him to move past it a little easier. The experience is overwhelming.  You will both come out stronger on the otherside.

 

LumpinmyThroat

hwt said:

Holes

90-95% chance of survival...pretty good odds! Sorry, I can't help with the question about the trachea, mine was removed before I had radiation. I'm sure MDA deals with this all the time and will keep a close watch.

I'm on your husband's side, the nurse should not have shortcut the system and wrote lung cancer on a consent form.  

Be patient with your husband, he is surely scared right now. Maybe suggest he take a notepad when he meets the doctors in addition to a list of questions he might have. You can help him comprise the list of questions from the concerns he tells you about. When he mentions a negative, have him get the pad out and write the question down right then. That might allow him to move past it a little easier. The experience is overwhelming.  You will both come out stronger on the otherside.

 

List

Listing out questions is a good idea and something I have not done well enough thus far.  I will have to suggest that.  I have taken notes at every appointment which has helped ease his mind when he can't remember what was said about this or that.  

Because we are now physically separated by hundreds of miles and I won't be at most appointments, it's going to be a challenge with the information sharing.  I will do my utmost to be patient though.  

debbiejeanne

limt, I don't know the answer

limt, I don't know the answer but wanted to say i'm glad the hubby is started with tx and i hope it goes quickly and smoothly for him.  now that he has started, it should go by rather quick.  we will be on the sidelines cheering him all.  can't wait to hear him ring the bell.  whoop, whoop.  as the patient, sometimes we do only hear the bad stuff.  i think its because we are so scared.  i would ask the nurse tho why she couldn't just use his "real" cancer dx for the form.  I've not heard of using another type of cancer b/c it's easier.  that just doens't make sense.  anyway, wishing you and hubby the best.

God bless you,

dj

patricke

LumpinmyThroat said:

List

Listing out questions is a good idea and something I have not done well enough thus far.  I will have to suggest that.  I have taken notes at every appointment which has helped ease his mind when he can't remember what was said about this or that.  

Because we are now physically separated by hundreds of miles and I won't be at most appointments, it's going to be a challenge with the information sharing.  I will do my utmost to be patient though.  

COMMUNICATION

When your husband goes for treatment, or check-up visits without you, you might want to consider being included in the discussion via cel speaker phone.  I've done that a couple of times when Diane was unable to be with me, and it has worked out great.  Hang in there.

PATRICK

debbiejeanne

patricke said:

COMMUNICATION

When your husband goes for treatment, or check-up visits without you, you might want to consider being included in the discussion via cel speaker phone.  I've done that a couple of times when Diane was unable to be with me, and it has worked out great.  Hang in there.

PATRICK

another idea is to have your

another idea is to have your hubby take a hand-held tape recorder and record the visit.  that way you can listen to it and come up with your own questions.

good luck,

dj

wmc

LumpinmyThroat said:

Holes

Thanks for the info!  That's crazy how fast the trach hole will close with the plug out!!!!

Unfortunately, I cannot be in Houston for his appointments, so I have to rely on hubby to recapitulate the information from the oncologist to me.  He latches onto anything negative and that's all I get to hear.  I have to take what he tells me as just general information the oncologist was giving him when explaining all of the possible risks and not get myself stirred up about it.  

I'll give you an example of why I believe this: When we were signing the consent forms for the radiation last week, the nurse said she was just going to put "lung cancer" on the thorax consent form for simplification purposes.  When we walked out of the appointment he started getting upset about "having lung cancer now".  I explained that the nurse said she was just writing that on the consent to keep it simple (right in front of him) and he questioned me like he heard an entirely different conversation.  Being the actual patient must be so difficult and it really impacts what info he absorbs from what is actually said.

My gut tells me he ASKED the oncologist about holes and that's what brought such a discussion up in the first place.  I was present for a previous discussion about holes he brought up with another H&N oncologist at MDA (Dr. Fuller).  Fuller said he thought the trachea would be ok... so that's what I'm going to latch onto and believe.

The oncologist also told him he would have a CT in two weeks to check the trachea and make sure it's holding up to treatment.  He gave hubby a 5%-10% risk of death from treatment.  I think those are some fanstastic odds personally...  

 

thorax consent form

Sorry but that will not simplify anything writing lung cancer on a thorax form. I would hope she can spell throat. It can cause all sort of problems down the road when they see lung cancer. That should be corrected as soon as you get a chance so it doesn't following him with any treatment in the future.

Now those odds are real good. I don't think you get that good of odds crossing the streat in Los Angeles...LOL

Will keep you both in our prayers and thoughts.

Bill

LumpinmyThroat

debbiejeanne said:

limt, I don't know the answer

limt, I don't know the answer but wanted to say i'm glad the hubby is started with tx and i hope it goes quickly and smoothly for him.  now that he has started, it should go by rather quick.  we will be on the sidelines cheering him all.  can't wait to hear him ring the bell.  whoop, whoop.  as the patient, sometimes we do only hear the bad stuff.  i think its because we are so scared.  i would ask the nurse tho why she couldn't just use his "real" cancer dx for the form.  I've not heard of using another type of cancer b/c it's easier.  that just doens't make sense.  anyway, wishing you and hubby the best.

God bless you,

dj

The Consent Form

Thank you for all of the suggestions!  I would love to conference into his appointments.  I will have to approach that subject carefully with him when I see him this weekend.

I'm also excited he's started treatment.  It feels like we are doing something instead of waiting around, so that's a positive.  He just completed rad #3 and had chemo yesterday.  He says he feels fine.  Without the 5FU, the chemo is more tolerable, I guess.  

They are expanding the target area to include one more node near the heart, so he's in simulation now getting remapped.  The local oncologist had questioned this node despite its small size and low SUV, but better to be safe than sorry...

I can't wait until the end of September when he comes home.