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tracheostomy questions

eglow
Posts: 4
Joined: Jan 2007

My Mom was diagnosed with tongue cancer in August 2006 and underwent a neck dissection w/ removal of lymph nodes on both sides in September. She has been through another surgery since then and has had a feeding tube and trach since September. I would really like to hear from other people about their own experiences w/ a trach. My Mom coughs a lot (still!) and no one seems to be able to tell us why. This is by far her biggest discomfort. At first the Doctor said because she was a smoker, she would cough but it would subside eventually. That has not happened. The cancer has not spread into her lungs, she's had scans.

Has anyone else had this problem? And if you did have a trach, how long and how did the removal process go? She is completing radiation and chemo this week so I'm wondering how long she might have to wait to get the trach out.

Thanks in advance for any info!
Emily

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Emily: My thoughts are with you and your mom. I had a neck dissection as well, along with having half of my tongue removed and replaced with arm tissue. Early on, I had a trach as well.

In fact, twice in the hospital while under the elixir that is IV Ativan, I apparently removed the trach myself. Because of my particular surgery (like your mom's) the nurses were afraid to put it back in themselves, so they would call out for someone from my ENT team and hope one was in the building...

Anyway, I had the trach removed following the second episode. The doc simply said I didn't need it anymore and the next day it was removed. I don't recall anything special about it's removal (since I had already taken it out myself twice, it is apparently a fairly easy procedure :)).

I would assume in your mom's case that they are concerned still about the ability to breathe on her own, and this may owe to swelling in her neck. I had just right side nodes removed, so this may be why she retains the trach.

You should ask the doctor why it is still there and what the expectations are for removal.

In the meantime, I too still cough for some reason, although I have not smoked now in almost a year and a half. I suspect it has to do with irritation in the esophagus rather than the trachea, although I am not sure.

Once the rads are done, you can expect some swelling to recede, although not all of it. Hopefully, they will then be able to remove the trach. I wouldn't expect this immediately, though, if swelling is the reason it is there. The effects of rad can linger for some time.

Wish I could offer more. Again, my thoughts are with you and your mom. It does get better. In fact, with the chemo and rads ending soon, she is coming out of the woods and into the light. It WILL take time. But she is on her way.

Take care.

kristian1207
Posts: 1
Joined: Feb 2007

Hi Emily, My mom had part of her tongue removed in October and she has a trach and feeding tube. She finished her kemo last week and she was 2 treatments away from finishing radiation but she got burned really bad and needed to stop. She might have to finish in a week or so. I hate her having the trach.I feel the trach is far worse than the feeding tube. She coughs alot and has a ton of mucus. I never expected it to be like this and it is very hard to deal with for me. Like you I'm still trying to find out when she can these tubes out and when things will start to get better. The doctors tell me I have to be patient with them and that the side effects take time to die down. So all I can do right now is wait and hope when she does get her scans everything comes back clear. The way I look at it is that our moms got this far so it has to start to get better soon. Keep me posted on your mom and she is in my prayers.
Kristian

eglow
Posts: 4
Joined: Jan 2007

Thank you both for responding. It really helps to know my Mom is not the only going through this. She's not a computer person so I will print off the responses and give them to her to read.

She finished chemo and radiation and has a swallowing test scheduled for next week. After the test, they will put in a smaller trach. So I guess this is kind of a long process. Although with the smaller trach I believe she will be able to cap it and talk a little easier.

You are both in my thoughts and prayers as well. Please keep me updated on your own situations. Soccer, how long has it been since your treatment and how do you feel overall? Any lasting effects from radiation?

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Emily: Great to hear that your mom is done with chemo and rads! She will begin to enjoy life a lot more almost immediately!

I can warn you that she will continue to experience "super phlegm", assuming she is (as I did) for a while, which is really annoying while you are trying to sleep. Eventually, most of that too, shall pass.

I had surg in October of 05, rads and chemo that ended in Feb 06. So it has been a year since the end of treatment.

I still carry a water bottle with me everywhere (or kick myself for forgetting) and lip balm, but they are not a hindrance, and become second nature pretty quickly. In my case the docs did an outstanding job in terms of rebuilding my face (they cut me open essentially in half from the middle of the lip down) and so there is very little scarring externally unless you look pretty closely. The radiation tissue scarring, however, some may remain forever. I am told that the swelling on the right side of my jaw and neck is rad tissue scarring and probably will not go away, despite phys therapy, masssaging, etc. That is fine, too.

I am eating, although I still have a tube for most of my nutrition. I have had small portions of steak, even, so everything IS getting better over time. I have a therabite to help prevent the usual effort of the mouth to want to close and it works to some degree, although it is very expensive for being such a cheap little plastic thing (:)).

I am at work fulltime (I ride a desk, so it is not so stenuous), although I still become fatigued.

I can caution you, too, that some people, quite a few, actually, who experience cancer also seem to have bouts of anxiety/depression. This is considered a part of the deal, I guess. Some attribute it to chemo after-effects and others to the cancer itself and all that it brings to the table. I believe it is both, and have long advised my own cancer team that they should include mental hygiene as part of the treatment team from the very beginning.

Otherwise, Emily, your mom has really a good life to look forward to. Hopefully she is not smoking, as that it is NOT helpful.

Once again, congrats to your mom on making it through the big hurdles. It may continue to feel like it's tough for a short while, but is skiing downhill now!

Take care.

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