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Need guidance with laryngectomy decision

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Saw my head and neck ENT surgeon yesterday. Let me lay a little foundation for this topic. I was treated back in 2004 for BOT SCC. I had 5 sessions of chemo and 38 radiation treatments. I've been clear of cancer ever since. The consequences of radiation however, have given me a fit.

I started having to have dilations for an esophageal stricture back in 2007. I was having them every 4 to 6 weeks to keep the esophagus open. In the meantime, my whole neck has hardened quite a bit due to the radiation. In January of 2011, my gum on the left side of the mandible began to open and expose the bone. This, theoretically, was not supposed to happen since I had all my teeth pulled before the Rad treatments. The gum kept opening more and more and in June, I had surgery to remove part of the jaw and replace it with part of my fibula.

After a month or so, they determined that the bone graft failed and went back in and took the bone out but left the titanium plate in place. After another month, a screw started working loose so they went back in again and took out the plate leaving me with a swinging partial jawbone. During this period of surgeries, I didn't have any dilations. The stricture is now closed completely and will not stay open. A couple weeks ago, my gastroenterologist finally gave up. We tried dilations every 2 weeks to no avail. A stent was considered but deemed not viable.

Right now, I can't even swallow what little saliva I produce. I still have the "temporary" tracheostomy in place. I have a disfigured face that maybe I'll get up enough nerve to post as an avatar (just to scare ya). My throat is rock hard with one less working carotid artery because the left external one busted due to calcification during the first surgery and had to be capped off.

So, my ENT tells me about a laryngectomy, which I had already been thinking about. He's not real keen on operating on me in that area because of the condition of my neck. I asked him whether he had ever done the operation on any other patients with a neck like mine. He told me that he had 2 patients that fit that bill. He said both of them are doing very well.

I want very desperately to be able to eat something again, even if it is only mashed potatoes and puddings. What scares me is my luck. The only thing I've been lucky about is still being alive after the BOT, a Malignant Melanoma on my shoulder and 2 SCC on my forehead. If one more thing bad happens, I'm afraid I will implode.

I know there are at least a few of you out there with laryngectomies. What I need to know is, was your neck in the same condition as mine when you had your surgeries and how your operations turned out. I appreciate you taking time to read all this. I hope at least one of you has an answer. I just don't know what to do.

phrannie51's picture
phrannie51
Posts: 4718
Joined: Mar 2012

since I am a newbie here. My mom had a lareyngetomy, but her radiation all took place at the time right after surgery...so wasn't in rock hard shape.

Because of your "luck"...which hasn't all been bad, because you are alive, but not great either in that you're having so many problems...have you, or has your Dr. thought of looking into any of the huge Cancer Centers...in the country? I don't know where you're at right now, but I was thinking of Mass General/Dana Farber...or Sloane Kettering...places where they see everything, and see it more than twice...

p

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Phrannie, thank you for your input. My two ENT surgeons teach at Johns Hopkins in Baltimore which, according to U.S. News, is ranked number 3 in the country for cancer treatment so, I should be in pretty good hands.

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

trying to get my head around your circumstances. tell me what benefit they hope to achieve for u with a laryngectomy? It is apparent that u have not had a good biological recovery from the rads, and your concern going forward is entirely justified. It absolutely shouldnt be taken lightly that youve had all these problems. There is a reason for them, and that reason is still present. Whatever u decide To do, I wish u the best with this.

Pat

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Pat, hopefully, with a laryngectomy, I will be able to eat something again and swallow liquids. Right now, if I try to swallow water, it either goes out my nose or I end up coughing for a couple minutes and it comes out my trach tube because I've aspirated a bit. We've already pretty much decided that my "temporary" trach is going to become permanent so we're going to switch it to a Montgomery trach to give my neck some relief from the constant irritation.

Yesterday, my sister was having surgery for breast cancer at the same hospital where I had most of my dilations over the years. I stopped in the Digestive Disease Center to see all the staff there that I have become very attached to. I told one that my gastroenterologist had given up with dilations on me. We were doing them every two weeks recently and still the stricture won't remain open. One of the nurses suggested that I see one of the other doctors that is still affiliated with the hospital. When he came in, I talked to him briefly. He is going to get my records and give me a second opinion about what can be done. One of the nurses said something about some kind of injections at the stricture site that sounded encouraging. I can't talk right now and have to use my little dry erase board to communicate which is frustrating. I couldn't talk at any length with the new doc since he had patients posted for yesterday morning. We'll see what happens. I hope this nurse knows what she is talking about with the injections!

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

it is a dilemma Im sure. I know u understand the negatives to surgical intervention. your rads have lead to a rock hard operating theater. one with very little blood supply and its attendant poor healing. any further surgery is a risky situation for u. I hope they can find a simpler solution. best tobu George.

Pat

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